I thought I was driving...

2007-09-05T12:23:00.000-07:00

Finally, the heat is starting to dissipate. It was in the hundreds over the holiday weekend, and I was miserable. I couldn’t stand it. It didn’t last very long, only a week, but it was brutal. This morning, at last, the fog rolled in again. I think it’s because I’m pregnant and my body is already hot that I have such a hard time with the heat. I also feel as if I am very cranky these days. I don’t know if it’s because this time around food doesn’t taste the same (neither does the few sips of wine I've had), and it’s all I can do to keep my energy up and fit in a workout now and then. I know that this will be over sooner than I think, and then having three kids will be even harder to find the time, but for now, I must learn to take it day by day. I don’t want to stress out.

I had a dream last night that I was in surgery having the baby and they told me the baby had Down syndrome. I can only remember asking, are you sure?, before drifting off again. I hope it’s only my imagination playing tricks on me and that it’s not my body telling me something. I hope that God gives me another typical child, because I really don’t know if I have the strength for another child with special needs. I want Owen and Tess to have the best life, and another special needs child would only complicate things.

I almost blew my top yesterday when we were at the beach house. I really, truly almost told his mom to “F*** Off” at the end of the day. First of all, I get so sick of their stupid poker game. They start in the afternoon and they can’t even be bothered to do anything else but play. God forbid anyone interrupt their game! Then, after they reluctantly quit playing because we had to get dinner on the table, the started up again after dinner. Now, it’s already 7 o’clock, Tess has been running a fever for the last four days and she’s tired and miserable, and Owen started pouring water all over himself (I get so mad when he does that…he has such a thing for pouring out any kind of liquid, although, if I think about it, it’s only because Tess has been into that). So I got mad at Owen, and told Erik, “Let’s get out of here, I’ve had enough.” His mother finally gets up from the table and decides to pay attention to Owen for two minutes (she hasn’t bothered to pay attention to him all day), and says “let’s change you” as she follows me into the house. I was heading to the bathroom and I said, "I didn’t bring a change of clothes." She said, “well, that’s what you’re supposed to do,” and I retorted, “Yea, well, when your son doesn’t help pack the clothes, and I am the only one doing the work, I’m bound to forget something.” As I closed the door I heard her say, in a sing-song voice, “well, then maybe you shouldn’t be having any more kids.” I swear I wanted to just punch her. She’s the most bitter old lady I know. She’s the only one I know who can’t appreciate that she has grandchildren. I was so furious that I started gathering everything and heading to the car. Erik knew I was mad. He quickly settled up with the poker game and we packed up. His dad could tell I was mad, too. I just have no patience for her anymore, and I hope to God this baby is healthy and happy so that she doesn’t have one more reason to get to say “I told you so.” But the fury passed.

It's time like these that I miss my family. I miss my mom and my sisters, who are so accepting. I miss that they are not around to see my kids grow up and we only get to see them once a year or so...

Fundraiser a success!

2007-08-31T16:06:00.000-07:00

We had our fundraiser for Down Syndrome Research and Treatment Foundation (www.dsrtf.org) on Tuesday, and it was a huge success! It was held at the Hollywood Bowl and we had about 125 people, including our celebrity host, Jane Leeves (Daphne, from "Frasier"). KCAL 9 news showed up and did a piece that ran on the 10 o'clock news. I was proud that we did exactly what we wanted: we did it just a little better, a little classier, this year. It was a beautiful setting at the Hollywood Bowl, and a place I would love to have another event at. But I think most people were too tired to go and listen to the music after the event, as I think several people left. We went up to see the music, but only stayed for a little while.

I think we are really making progress, and I think that this is going to be something huge when it gets rolling. Dr. Mobley believes that in about 5-6 years he will have a treatment for our kids that will raise their cognitive level by 10-20%, which would be incredible. (You can read more about it on their website: www.dsrtf.org). I think we pulled in a lot of money with the silent auction, the raffle and the dinner tickets. More importantly, I think that Dr. Mobley really feels that we could get Paul McCartney on board for next year. That would be huge star power for us!

Anyway, it took a lot of work and effort, and time, and now I feel adrift. I do have a party I am planning for work in October, but I feel as if this event gave me real energy: the kind that keeps you up working late at night, keeps you pressing on even though you are pregnant again, etc.

I am now 15 weeks pregnant, and for some reason, I don't really care whether I find out if it's a boy or a girl. I'm just satisified that the baby is growing and things seem good. Of course, I can't get an appointment with the perinatologist until 19 weeks...they refused to see me earlier because I refused all the tests. I'm 40, and chances are my tests will come back false positive, or maybe they will really be positive, but who cares? This way, I don't have to make a decision. We live with the child we have created. I couldn't be this way if I didn't know Erik. He is so calm, so reassuring, and so sure that we are meant to be parents to whatever child is sent our way. My doctor told me that so many people think they can control the outcome of their child by taking all these tests, but they can't. And I agree. I just hope things go well. But at least I have six more months to enjoy being pregnant and feeling a life inside of me. Nobody can take that away from me.

Trying Too Hard

2007-08-11T15:08:00.000-07:00

Today, I decided to take Owen to this drum class that Remo Drum Center puts on every weekend. Some of the other moms from the Moms group take their kids, so I thought it might be nice to have a few of us with kids with Down syndrome. Of course, Owen hated it. I mean, absolutely wanted to go home. Kept hugging me, saying "I want to go home," and he was shaking, as if he couldn't handle it. I know he has sensory issues, and I know that big crowds and lots of noise make him very uncomfortable, but I really wanted him to like the class. I wanted it to be something fun we could do together. He did the same thing when I took him and Tess to church with me, he was shaking and holding on to me so tight that I could barely breathe. Sometimes I wonder if he has some other kind of disorder, like a phobia, and that's why he can't deal with crowds. I wonder if I was like that when I was little. But, I did grow up with 8 brothers and sisters and a lot of people always around, so I can't imagine that I was like that. It makes me sad, because I wonder if he will have to miss out on things when he gets older like going to the movies, or maybe a musical concert, or large parties. Will it prevent him from socializing to the best of his ability? The only thing I think might be okay is that my sister Marie was really shy and afraid of strangers when she was little, so maybe that's just a personality trait. My sister is not the best on applying herself in unfamiliar situations, but she has learned to adjust and enjoys her life. I don't know. I feel angry sometimes at him, for being this way. I saw 50 kids today beating on drums, dancing, running around, and I had to leave after 15 minutes (although, honestly, the drum beating in an enclosed space like that was a little deafening). Should I forget about trying new things with him and just let him find his way? I don't know. I hope that he will grow out of it, and learn to adjust. My fears, of course, tell me that won't happen.

I'm back!

2007-08-06T13:25:00.000-07:00

It's August already, I'm so amazed at how fast time is flying. I'm really glad to see summer going so fast...I'm pregnant again (12 weeks on Friday!) and the heat is killing me, even though it hasn't been that hot. My body temperature is just a few degrees hotter, which makes all the difference.

So far, all seems to be well in this pregnancy. I'm sick during the day, and really tired, and my belly is getting rounder. I'm so happy I'm pregnant again, and I'm trying to enjoy this since it will be my last baby. Of course, no sooner did we find out we were pregnant that my youngest brother called to say his wife was pregnant with their third. "So I guess this baby will probably be the last grandchild," he said, which I thought was rather presumptious. I didn't tell him I was pregnant, because I hadn't been to the doctor at that point. So when I called him back a few days later and told him that he was right, their child probably would be the last grandchild, since ours was due a week earlier, I think he was really stunned. His wife is so competitive with me, I don't understand it. And they are so cocky about having kids. I really didn't need to know about how she told him it was "time," and in one shot she was pregnant. It took us about 9 months to get pregnant with Tess after a miscarriage, and then this time it took us about 8 months. Some people just don't get it.

Anyway, enough about them. I'm excited about having a third child. This baby will be sometime around Valentine's day. When I told Owen the other day that "Mommy was going to have another baby, is that okay?" He looked at me and said, "yea, Mommy." Then he reached up his arms and said "hug." It was so amazing. It was like he really knew. He's only done that a couple of times where he really knew I needed a hug, and asked for one. I think he is so intuitive.

He has been taking the bus to and from school. It has made him so much more independent. He really likes it. I was so worried about putting him on a bus alone with a male driver, but then I realized that they only have a certain amount of time and they have to be at school, so I was okay with it. It's a female driver who brings him home. But he likes it. He has grown up so much since last year. The teachers say he is doing great in school. I'm so proud of him.

And Tess. She just amazes me every day. Lately, Owen tries to take every toy from her and she says, "no, mine!" I think she learned that from Owen. He will say, "it's mine," and walk away with something. She's smart. She picks things up fast. She's been walking since she was 16 months, so she is getting the hang of it, but I think she's a lot like Owen: very cautious. Both of them are very leery of running too fast or stepping on things. Tess is talking a lot, too, and putting words together. It just seems so effortless on her part, whereas with Owen we struggled to watch him learn to communicate. And he does communicate, it's just his own language sometimes. He still has garbled words, but he is getting more and more clear.

I know that this new baby will be the right addition to our family, I only hope that God sends us another typical child. I love my child with Down syndrome, and if we had another one, he would always have a companion, but I hope God sees that handling one is enough for me.

So Sorry...

2007-06-02T21:39:00.000-07:00

I haven't posted in soooo long, and to be honest, this may be my last post for a while. I'm just tired. I'm tired of trying to keep my life together: work, home, school for Owen, therapies, fundraisiers, Mommy and Me...I feel as if I have no time for me anymore. All I want is an hour a day to be able to go for a walk, or a hike, and I find that I can't even fit that in anymore. It's as if my life is consumed by my life. And I can't blow off work, and I can't blow off home, so instead, I blow off "me time." But part of me time has been blogging, so I'm sorry to say, for now, it has to go. I just don't want to have another thing on my "to do" list, and at this point, it has become that. And don't get me wrong, I LOVE that I get so much time to spend with my kids, but that means we are playing outside, or at the park, or having a playdate, so I can't really blog. And one day, I will have all the time in the world to blog because my kids will be older. But for now, I give them the respect they deserve, which means, I am trying to spend that time playing with them.

There is so much to write about right now, that I even feel guilty signing off for a little while. But, I have to concentrate on my life. We just finished a video with Owen's yoga teacher (who specifically teaches kids with Down sydrome) and it was wonderful. She is putting a DVD together for parents of kids with DS. We shot the video here, I got the cameras from my company, and I called my former company for the lighting. Then, we had this great day. In return, Owen gets four months of free yoga with Lucia, and my husband and I get an hour of yoga with her, which has been great.

The next fundraiser for Down Syndrome Research and Treatment Foundation (www.dsrtf.org) has come together. We are doing a night at the Hollywood Bowl, in Los Angeles, on Tuesday, August 28, 2007. It will be a great event, and we are getting some great things donated for the event. If you want more information, go to the website (listed above). I really want to concentrate on getting some celebrities to the event, so that is another reason I need to streamline what is important to work on.

Also, I just turned 40. And I really thought I was pregnant last month. And I wasn't. It's been 7 months now since Tess weaned herself from breastfeeding, and we have been actively trying since then (she's 16 months), and we still have not gotten pregnant. I think it's over for me. As much as I would love to be pregnant again, I think God might just have other plans for me. I would love to have one more child, I guess I'm just not sure where they are going to come from, at this point. Maybe adoption...later.

I will update you all if I have a chance, but thank you for keeping up with my story. There are so many wonderful things going on with Owen, and my world of Down syndrome, that I can't wait to tell you when it really takes off and we have some celebrities involved. For now, whenever I meet someone who tells me how blessed I am, I can only answer "I know," and thank them for recognizing that.

Take care, everyone.

Maybe Paul McCartney??

2007-04-09T20:40:00.000-07:00

I got some, maybe, good news tonight. Last fall, we did a fundraiser for Down syndrome research here in Los Angeles (www.dsrtf.org) which we raised over$21,000. It was a great event, and Dr. Bill Mobley spoke at the event. His first words were, "I'm here to tell you there's hope for your kids." He gave this great powerpoint on where he is at in his research (he believes that in 6-8 years he will have a treatment for our kids that will raise their cognitive levels by 10-20%). So, at the dinner, he mentioned that Sir Paul McCartney had called him, out of the blue, at his office because he had a close friend who had just had a child with Down syndrome. Paul McCartney flew Dr. Mobley to London after our event to meet with this family, and then he just flew him there again recently to talk about how he (Paul McCartney) could get involved. Of course, my thought is, he can play a song or two at our next event and we can raise awareness and money at the same time. But, after not hearing anything for a while, I just assumed he wasn't interested. It turns out, he is definitely interested in being involved, and participating, but he has another organization that he is a spokesperson for that he must work around. I was so excited to hear that! Wouldn't it be so cool if we could get Paul McCartney to be a spokesperson for our kids?! How exciting would that be...

On another note, I just spoke with a producer from CNN, who is doing a story for the Paula Zahn show. He wants to talk with parents who had a prenatal diagnosis, and the medical community pushed for termination, yet they kept their child and feel that they are so glad they did. I never had a prenatal diagnosis, and most moms in our group didn't either. But a few did and were treated pretty badly by the medical community. I liked the producer. I think he is going to do a good story, and, by the way, he has a cousin who is 22 with Down syndrome, so he understands that they are amazing people.

They are going to come film our children when we do our park day, but I will be out of town with Tess. Erik will take Owen, though, so he can be a part of it.

I am on vacation from work for the next two weeks, and have been making plans so we can do things...the park seems to be high on our list, as well as the Long Beach Aquarium, and maybe a day out in Malibu.

Long Time Since Posting

2007-04-07T15:29:00.000-07:00

I really haven't felt like posting lately. I don't know why. It's as if I'm just trying to get my life back in order and I just feel that probably nobody cares where I am at in my life. I haven't even really been writing in my journal lately, which has been worse for me. I miss having the time to write. I feel as if so much of my day is taken up by the kids, and by 10 p.m., I want to go to bed. And, on the days I work, since I am on the computer all day, I really don't feel like coming home and getting on the computer.

There has been so much going on lately, and of course, we are all sick again. I am so tired of being sick. This time, it was a long cold followed by a hacking cough (Owen is now on medication for bronchitis). I probably have it too, but I haven't had time to go to the doctor. Funny how we make time for our kids, but not ourselves. I have been making time a couple times a week to go hiking. I miss running and hiking, and wish I could do it more often. It's like my only time to think, and pray. I miss praying, too. I feel as if, at the end of the day, everything has escaped me and I'm too tired to ask God for anything, especially since I feel selfish for asking for anything anymore. I do wish I could get pregnant again. We haven't exactly been trying, but we haven't been protecting ourselves from getting pregnant, and so far, after five months, nothing. That is so completely opposite of my family, too, where they get pregnant at the drop of a hat. But I guess maybe the two we have is fine. I have to count my blessings and remember that we have two really amazing kids.

I am turning 40 next month, and I think I've been so fixated on that. I don't know why it seems like such a big deal, but it's making me feel old. I never minded getting older in my 30s, but now I will be 40. When I was young, 40 was old! And here I am, 40 years old and still hoping to have another baby. Who am I kidding?

There are three moms in our support group who are pregnant again, and I'm so jealous. I know that they will have to endure the fear, since this is their first after their child with Down syndrome, but I see them as so lucky to be pregnant. There was a new mom who came to our moms group the other night who is 5 months pregnant with a child who has been diagnosed with Down syndrome (she has a 1-year-old at home). She is so courageous, and I say that because, of course, she has been told awful things by the medical community. She will have to be so strong in the next four months, because people will be mean and say awful things. They need to really have faith in themselves, and I think they do. She is this wonderful person, and I am so glad that she came to us.

Tess is getting older, 14 months already, but not walking yet. Why? Why can't she just walk like every other kid her age? Why is she waiting? I know that she is talking a lot, but I'm tired of hearing "early talker, late walker." Can people just stop judging me and my kids?

We colored Easter eggs today and Owen was so excited about it. I'm so glad because I didn't know if he would understand it, and I don't know if he knows why we were doing it, but he was laughing and clapping and just having a ball...until he spilled the orange color all over the table and I got mad. Tess was having fun with it, too, but she got upset when she couldn't taste the colors. I feel like such a mean mom for getting mad at Owen for spilling the water. I mean, he's only three, how can I expect him to really understand not spilling something that he is clearly excited about and having so much fun with?

Sometimes I really do believe Erik is the better parent...

Day by Day

2007-03-12T21:07:00.000-07:00

Now that I have gotten my kids on a sleep schedule, Tess is down by 6:30 p.m. (7:30 with the time change) and Owen is not far behind. He is down by 7 p.m, 8 p.m. with the time change. But a funny thing happened when we finally got settled in here and I decided they were going to start getting to bed at a reasonable hour: they liked it. Now, they crave going to sleep at their bedtime. Every night, Owen says, "Mommy, I want to sleep," almost exactly on the hour, and if I don't get him right in bed, he falls apart. Tess is the same. She is fed, changed, and I head upstairs with her, where she reaches for her crib as I walk into her room. She puts her head on her favorite blanket, and I hear her talk for a few minutes by herself, until she falls asleep. With Owen, I know I created some bad habits, but he was my first. When I lay him in bed, he just wants to rub my hand with his fingers to fall asleep. And I just can't stop it. I can't let go. I love him so much, and it gives me a chance to be still with him, to savor those last moments of the day with him.

Tonight, I had to give Owen a bath before bed because he was so dirty, and I put bubble bath in the water. He was so entranced by the bubbles, and the way he could put them on his face (and on mine, too). But as soon as we hit the magic hour, he said, "Mommy, water and sleep." (Let's just say he's a man of few words). So I got him dressed for bed, and I said, "I'll go get your binky, why don't you get in bed." "No, Mommy," and he grabbed me, "Hug. Hug," and he held on so tight. I could swear he said "I need a hug," but I won't go that far to say my son is that verbal in speech. But he was able to communicate that to me, which is so important. (And FYI, about the binky, he has sensory issues, so he gets one to help him fall asleep, but no other time of the day).

I watched my son as he fell asleep, and I was so grateful to God for sending him to me. Yes, I love my daughter, but there is something about this person who inhabits this fragile body, with his simple requests, that just tears my heart. I don't know why, but I fear for him and his health so much more than my daughter. Although, today his blood tests came back and they were normal, yeah!

I think about my life and how much he has given to me, how much more rich my life is because of him. I couldn't even imagine what my life would be like if we had decided to test and terminate, and then waited for our next child, who might just very well have been Tess. When I watch the two of them, and how he makes her laugh, it is priceless. She adores him. People always ask me, "I bet she's catching up to him..." Yea, and so what? Maybe she is a little faster in some things, but you cannot replace the joy he brings to every one of us in our household. It's funny because our kids are such easy-going, well-mannered kids. Owen says "thank you" all the time when you give him something, and when he burps, he says "Pardon me" (well, he leaves off the P). But we try to instill in our children common courtesy, which I'll tell you, I don't know what other parents are teaching their kids, but it ain't manners! But that's another subject for another day.

I wish I had more time to write. I always feel so much better when I have a chance to let my thoughts coalesce. For now, though, I have to be happy with the time I do have. I wouldn't trade my time with the kids for writing, and I suppose that's why I probably will never finish writing my book.

Wonderful Things About Tess

2007-02-27T16:37:00.000-08:00

She's fourteen months old now, and what a wonderful, sweet child. I couldn't have asked for a better second child. She's so sweet, she wakes up with a smile, and goes to bed with a smile. She has this habit of tilting her head to the side when she smiles at you, as if she's pretending to be shy. She's so funny, too. I always wondered when people said their 1-year-old was funny, how could they be? How could they develop that fast? But they do, and I suppose with Owen, things did come slower, and maybe some things just weren't there when they should have been.

My parents were recently in town, and I said to my mom, "well, I hope I don't have to worry because she's not walking yet, since she's already fourteen months old," and my mom said, "it happens when it's the right time for the child, and besides, she's going to be an early talker, listen to that girl!" And she was right. She already says Mama, Daddy, Sissy, ball, bath,
nana (for banana) and tries to copy a lot of other words. She is constantly trying to talk, and she means business. As for walking, she is walking around the furniture and starting to hold her balance for a few seconds without hanging on to anything. Erik thinks she'll walk in a week, I think it will be more like three weeks. Of course, we placed bets on it (and no, I'm not going to tell you what the stakes are, but it involves how she got here...)

My beautiful little Tess is my girl. She follows me around and wants only me, and for the most part, it thrills me deep inside. I know there will come a day when she will probably hate me, but for now, I just love when I walk in the door and she reaches for me, almost hungrily, as if she can't get enough of me. And she is such a good sleeper. I literally feed this girl at 5:30 p.m., dress her for bed and she is reaching for her crib as I bring her into her room at 6:30 p.m. She lays down happily, and sleeps through the night until 6:00 a.m. I find that I have to get in bed these days exactly by 10 p.m., or I cannot possibly get up and start my day with her. I wonder when it got so impossible for me to not have my 8 hours of sleep??

As for Owen, my parents were also amazed at how much his language is coming along, and when I started paying attention to it, I was amazed too. It seems as if when he got over being sick, he blossomed. He began talking to me, asking me for things, and now is using not only 3 word sentences but sometimes 5 or 6-word sentences. I am astounded. I feel as if he is trying to catch up to what a normal 3-year old would be saying. He is my amazing boy. We cut his hair the other day and I almost cried he looked so grown up. We finally have gotten the art of cutting his hair down, but we wait months because it is such agony for him to feel the scissors cutting his hair. Of course he screams and cries, but we finally decided we would rather he scream and cry at home with us than at a salon that charges us $25 for it.

We are all feeling better, and of course, March is upon us. There has been some great press the last few days on a new drug for treating our kids which is all of part of the Stanford study that we did a fundraiser for back in November, www.dsrtf.org. If you don't know the organization, please visit their website. Dr. William Mobley is the forefront researcher, and he believes that this treatment for our kids can raise the cognitive level of our kids by 10-20 percent, which would be huge. They are still some years off, because they have to do trials, but it is so promising. I don't have a link to the articles, but they ran in the Wall Street Journal, LA Times, etc.

Thank God summer is coming, and we can all start getting outdoors more. The days will be longer, the weather warmer, and the sickness gone...

Strep Throat

2007-02-21T15:49:00.000-08:00

On Saturday afternoon, Owen had gotten worse and the rash was making the skin peel off his body in layers, so we finally took him to the emergency room. The doctor looked at his symptoms and then suggested we draw blood in case he had something called Kawasaki Disease (which is not something you want your child to have, believe me!), and also took a culture for Strep throat. We were sent home with some antibiotics and told to check with the doctor the next day, in case it was Kawasaki Disease, which would mean he would have to be admitted to the hospital and have his system flushed of toxins.

They finally determined it was Strep throat, but it turns out our regular pediatrician said they had two cases just like Owen's where they thought it was Kawasaki Disease, so she was really curious about his symptoms. He's better now, but of couse, Erik and I both have been fighting fevers and major sore throats, so now I think that we have Strep throat too. But it's getting better now, so do I still go to the doctor for it? My mom thinks that you need to treat it regardless, but I am reluctant to go in and be given antibiotics, just in case. I suppose I should call my doctor, anyway.

My parents are in town, so it's been a little crazy, and of course, they arrived just as we were all fighting sickness. Does it ever end? Do we ever get healthy again? I've never been so sick as I have been since Tess was born, maybe because Owen is in school and he gives it to Tess and we all bounce around with it....

Sick again...

2007-02-16T21:43:00.000-08:00

Owen is sick again, and it gets harder for me to handle every time it happens. I feel like when he gets sick, it's like he gets run over by a train. The poor boy is so miserable and I don't know what to do for him. To be honest, there is nothing to do for him. Here is what happened (and of course, you can judge me, I am one of those whacked out parents):
I went to pick my son up from school, as I do every day, Monday through Thursday, and I saw the teacher carrying him and he was crying. That was so odd, because he loves school. The other day, he cried when we tried to leave. So she comes to the gate, gives him to me, and says, "I don't know what's wrong with him, he doesn't seem to feel good, and then he got whacked on the head, which sent him over the edge." So, these teachers (who I love, by the way, and they do a commendable job with the little resources they have), sent me on my way, and I was trying to calm him. Meanwhile, every mom who he says hello to on a normal day, who think he is so sweet, are looking at me with sympathy, (we all know he has Down syndrome, and for 99% of the time, he is the happiest kid in the world), and I don't know what to do.

"Mommy, wanna go home," he keeps saying, which I know means he is upset. All I can think is, how hard did the other kid hit him, and with what, but I forgot to ask, so I get to the car, put him in his seat, and start to drive away. I look back and this kid is just about passing out in the seat, his eyes rolling up in his head. Now, I'm worried. Did he have a concussion? I call the school and tell them to put me through to the teachers now! and they do, where I find out it was a little paper hat that he was hit with, and it couldn't have done any damage, but he wasn't feeling well and that might have put him over the edge. Well, I'm freaking out because it looks like my kid is passing out in the back of the car, and I can't get him to take a nap during the day even if his life depended on it, and so I was almost crying saying, "Are you sure? He can't have a concussion right?"

When I got home, Erik brought him inside and upstairs, and the teachers had assured me they think he is sick. Sure enough, he has this raging fever, and he is sleeping. We gave him Motrin, but he woke up a few hours later, still feverish. I've never seen him this sick. We continued for the next few days with Motrin, then Tylenol, and even Benadryl, because he has this skin rash from the heat. He's still not off the fever, and it's been almost three days (it broke a little earlier and he ate food all day today, so I didn't bring him in to the doctors...we are going in Monday). So tonight, we thought he would sleep good because the fever is down, and he is tired. But that rash! It got so bad around his penis that we finally just put him back in underwear (he was wearing a pull-up diaper in case he had an accident), and I lathered it with desitin. Finally, he fell asleep with my husband.

Why is it that he is so destroyed by sickness? Why? I don't worry about Tess nearly as much. She has had sicknesses, but they don't destroy her like they do Owen.

Sometimes I wish I could have a chat with God:
Me: Okay, so they will have issues with learning, why add health issues?
God: What's your question?
Me: Why couldn't you have at least given them a body of steel, since you were already going to make the road tough anyway? Why give them so many issues?

I suppose I will never know the answers, but still, why does it have to be everything for them? Why couldn't it have just been mental issues, or slowness, whatever, but allow them to be healthy. Why are they so challenged in every aspect?

I suppose I'll never know why, I just want my son to be healthy.

Getting into a Routine

2007-02-12T20:31:00.000-08:00

I finally feel as if we have our routine organized a little bit. So I am now able to think about the things I did when I lived in my old house -- like blog, or write, or read a little more. Things don't seem so crazy anymore, and I've gotten Tess back into a sleep routine, so she's not up all day, she actually takes two naps again and is down by 6:30 p.m. Owen is the one I worry about. He doesn't sleep. He wakes up in the middle of the night, comes into our bed, and kicks us all night long. It's as if he is this restless sleeper, and I can't imagine that he is getting much deep sleep; and of course, Erik is getting no sleep because of it (I routinely go to Owen's bed and sleep there, since it's a twin bed, and I can stretch out). But we have got to get him under control. I just don't know how. It's as if he sleepwalks into our room, but refuses to lay back down in his bed when we put him back. So he comes back into our room three, four times a night. It just seems easier to make room for him and let him sleep there, but I know that is not the solution. I've been reading all the sleep books, but there is nothing for a child who has a "syndrome" to tell me how to get him to sleep better. I know that it is affecting his learning during the day, all the textbooks point to that. It can't be easy on him. And the nights that he is so wired we can't get him to sleep until 10 pm., then he still gets up in the middle of the night and then at the crack of dawn again.

I asked some other mothers of kids with DS if they had the same problem and for the most part, they do. So, I guess there is some validity in that our kids have issues. I just miss my 8 hours of solid sleep! And I wonder, will this ever end? Will he be 18 and still not sleeping??

We went to Barnes and Nobles bookstore this afternoon for a story time hour featuring adults with Down syndrome. It's a program they have started because apparently the President or CEO of Barnes and Nobles has a child with Down Syndrome. There were a good 20 people there, and it was nice to see so much support. There were kids with Down syndrome in all age ranges, but also many of my friends from the MOMs group.

Speaking of the MOMs group, we have now grown to 26 moms, and we have such a great time every month. I started this group to find a community of moms for myself, and now it has become this great group of women. We meet the 1st Wednesday of every month, everyone brings a dish to share and wine (if they drink) and we meet at someone's house (we all rotate). This month was at my new house and what a great time we had! It's not even about the Down syndrome anymore, it's just such a great, reliable group of moms who have really hit it off. And we don't exclude anyone, every time we meet a new mom we invite her. So, it's really about the fact that we all share this common bond and it has made us sisters for life, in a way. I also have a list of all our contact info, so I pass that around and we all can then choose to make further contact if there is someone we especially bonded with. It's really an important group for me, because I feel as if I belong.

My parents come in town this week, and I'm so excited to see them and show them the new house. We finally have a guest bedroom, too, so they no longer have to try to sleep in the living room on the pull out couch. Plus, my dad is going to be so psyched when he sees Erik's new 52 inch plasma TV (okay, we are missing furniture in the kids bedrooms, but our old TV went bust so we spent a little more on the TV...where are our priorities, again?!)

What's Not to Understand?

2007-02-11T09:39:00.000-08:00

Last night we went to my husband's parents for dinner. God, I am so sick of him mom. The first thing that happened when we walked in, is that his boy cousin, who is five weeks older than Owen, wants to give him some cowboy boots and he put them in a bag like they were a present. So as soon as we walk in, him and his sister are grabbing at Owen and sticking a bag in front of his face. Now, we have a very quiet household, and transition is not that easy for Owen, especially when people just glom onto him as soon as he walks in the door. Of course, he got shy, and he turned to me. His cousin kept forcing the bag in his face, and Owen walked through the dining room to the kitchen, as if to get away from everyone for a moment. In the background, I could hear my MIL say, “See? He doesn’t get it. He doesn’t understand that it’s a present.” The way she said it sounded like, “See? That’s how retarded he is, he doesn’t understand something like a present.” I was seething as I heard my SIL agree.

Come on, give the kid a break, just because your loud, obnoxious, typical kids who see everything and say “gimme, gimme, gimme,” and want, want, want are shoving something in Owen’s face, he’s supposed to respond with enthusiasm and joy? It just irritated me beyond belief. Finally, after I was able to get the two cousins to move back, and Owen looked in the bag, it was a pair of cowboy boots. Apparently, his cousin was so excited to give them to him because they were his favorite pair of shoes (and I’m not even going to comment on the fact that he is so shoe crazy…wouldn’t that be a hoot if the big, strapping boy turned out to be more interested in fashion than basketball?). The next day, after we had a chance to unwind in our home, free of the two screaming typical kids, Owen saw the bag, said, “Mommy, boots” and went over to it, pulled them out and spent the next half hour trying them on. I really even don’t want to tell my MIL or SIL that, because I just don’t want to have to defend my son’s actions when he first got there, and their obvious pity for his lack of understanding. He does get it, he just gets it when he wants to, and in my book, that’s okay.

I so wish people would just allow Owen to be who he is...I know that Erik's mom gets so upset, especially at Christmas and birthdays, because Owen doesn't just ask for everything he sees, and he doesn't tear open presents. So what? Kids today are so used to getting stuff that they push the envelope with their parents and just want, want, want. I'm glad my child isn't so materialistic and doesn't just want everything. Of course, a lot of it has to do with parents just giving their kids stuff. We go to the store and Owen grabs candy off the shelves, but I tell him, "Owen we don't eat that stuff," and we put it back. I know some parents whose kids throw fits and yell "candy" until they get it...hmmm, if you don't say no the first couple of times, of course they are going to work the system. What is wrong with parents saying no to their kids? I know for sure that Owen's two cousins get tons of things for their birthday and Christmas, and their parents just can't put a limit on it. So I'm fine with my child not wanting everything in sight. Maybe he'll be a little more conscious of the world and it's limitations this way...

I Don't Know What to Write

2007-02-05T21:22:00.000-08:00

I really don't know where to start...I haven't been keeping up with writing at all, and I feel as if so many things have already happened that it's too late to talk about them. I really can't seem to stop things from happening and being able to mark their passing. Every day just seems to get busier and busier. Maybe it's because we still have workers in the house, and when I am home, it seems as if I am never alone. Even if the kids are playing, or watching TV, there are still other people around. It's only nights like tonight, when the kids are asleep and Erik's out, that I can think about where my life is at.

I left on Friday of last week and went up to Santa Barbara for the film festival; just by myself, for one night. It was a nice trip. I felt as if I was able to shed all my responsiblities for one day, and just go see movies, and shop and eat alone (room service, and my own bed, what a night!). I found myself very comtemplative while I was there. I thought about college, and life in Michigan, and Owen's diagnosis, and trying to get pregnant with Tess. It's as if I had this great space of time, and I wanted to soak in the past. I wanted to just let my mind wander through my life, and run away with thoughts. I found myself thinking about twists and turns in my past, and how all the decisions I had made -- some good, some bad -- had led me to this moment, to this life, to two kids and a husband and a house in Los Angeles. I found myself renewing my promise to remember my dreams, and perhaps try to restart them. I thought about friends, old and new, and who I am now compared to who my friends are. It was so important, this soul-searching, because I felt as if I was re-energizing myself, as if I was renewing my life batteries. I needed those days, to remember who I was, without two kids hanging on to me and food slopped down my sleeve. I know that one day my kids will be grown, and they will not need me as much as they do now (yes, even Owen), and when that day comes, I'm going to need to rely on me, on my dreams, on my life before children, to get me through that time. Because it will be sad, but it is a part of life.

So, another soapbox. I just saw "An Inconvient Truth" at the Santa Barbara Film Festival, and was lucky enough to hear Al Gore speak after the film (along with the director, Davis Guggenheim, who by the way, is married to actress Elizabeth Shue, and they recently had a surprise baby...I think she's 42). The film is just plain scary. I watched with my mouth open, and felt so uncomfortable to see what we have made of our world. And as I sat there, I thought of all the carbon spewing out every moment, every day, everywhere. It feels as if this global warming is unstoppable, because we have not addressed it, and our joke-of-a-government still refuses to acknowledge it. But it is real, and scary. I remember how hot it was last summer and it almost made me physically ill. But from what everything points to, it will only get worse. We will become condemned to our homes because the weather will be too hot to bear, the water will be scarce and natural disasters will become more regular occurrences. What kind of a world did I bring my sweet gentle souls into? One that is so dirty, and foul, and messed up??

So, to counter my own carbon footprint, I made my husband put in those energy saving lightbulbs, we have energy star appliances, a tankless water heater, insulation in the house including under the floor, and every day I walk my daughter to the store so I can pick up anything I might need. And, I drive a Mini-cooper (okay, so maybe it's not a hybrid, but it's not a gas guzzler, either).

Please, everyone (all two of you left reading my blog), please think about what you are doing to the environment and make a change. Even if it's just one tiny little change. My grandchildren (if there is any world left), will thank you.

A Community of Families

2007-01-27T13:24:00.000-08:00

We just got back from the park, where we had our park day with other families with kids with Down syndrome. This turned out to be the most well-attended day. We had families from Orange County, Palos Verdes, Long Beach, Pasadena...the nice thing about it is that nobody was exempt, anyone who got the e-mail could come. We had all age ranges, and siblings as well as parents. We made a potluck out of it, and it was so nice to see everyone gathered there. My theory is that if our kids grow up together, then they will have a community of people who are just like them, so even if they have typical friends, or other friends with disabilities, they will have a group of people who they can absolutely connect with. It made me glad to see so many of the moms and dads connecting as well. Our kids are all different levels, all different types, but for today, even though we were gathered because we all are touched by Down syndrome, today, they were just kids at the park.

On another note, the house is beginning to shape up and get finished inside. I can't wait until it's just me and the kids during the week, not me, the kids, the workers, Erik's parents, and the babysitter. Right now, the kids are still unsettled (and the mom, too!), because we still have people in and out of the house. And, his mom is the worst. We are having a small birthday party for Tess tomorrow, and she keeps bringing things over to decorate, changing the furniture around, telling me what to serve, and what to serve it on, and I've almost had enough. She totally wants to show off this house as her own, mainly because her husband worked on it. She spent months telling Erik he was stupid for buying it and for the design, and now, she thinks it is the best thing since sliced bread. But only because she keeps saying that it was all her idea. It's enough to drive me to drink...of which I have, a lot, lately. It seems like every night Erik and I are having red wine, and I just can't stick to my resolution to only have drinks on the weekends. Then, it seems like there is an occasion every other day, and I know I just have to say no, but sometimes, after a long day of construction noise, the kids, his mom!, and everything else, the wine is more necessary. I know that is bad, but if I can just get through this unsettling time, maybe I can have my peace back, and my house. I'm tired of sharing my life with his parents, every single day! I wish they would just go away for a couple days and leave me alone.

Some Pix of the Kids

2007-01-08T12:43:00.000-08:00

I finally downloaded some pictures and thought I would share them...Tess will be a year old this month, hard to believe! And Owen, will be four! I feel like we have finally turned a corner with the sickness (of course, a second round of antibiotics help, too), and Owen went back to school today. He cried, of course, but I'm sure he'll be fine. I just want to get back into a schedule with the kids, so we can start normalizing our lives again...

The Sweetest Words

2006-12-31T14:09:00.000-08:00

We all have colds right now, and as I came into the house, I sneezed. "Bless you, Mommy," said Owen, from his toy room where he was watching the Backyardigans. My heart leaped as I realized he put a sentence together. He didn't just say "bless you" like he had been doing lately when someone sneezed or coughed, he said it to me, at the appropriate time, and in the correct way. He said "bless you, mommy." Thank you, Owen, I feel blessed to have you.

Settling In

2006-12-29T15:04:00.000-08:00

It's been almost three weeks now since we've moved, and I am starting to like the new house (although I really don't have a choice). I do miss my old house still, and already Erik and I have had a couple of fights over silly, stupid things that got blown out of proportion. I suppose we are both still under stress, and I just keep hoping our lives will get back to a normal schedule. Maybe it never will, maybe we need to develop a new schedule. Today, Erik got the office straightened out and my desk put up so at least I can start unpacking that room and getting my calendar in order. I feel so lost without a calendar on my fridge like we had in the old house. Of course, now that we have a stainless steel fridge, the first thing everyone tells me is that you can't put anything on it. I suppose I'm old fashioned like that where I loved to put pictures on my fridge, quotes, relevant information, etc. Now, I'm living in a different world, it seems.

Both the kids woke up all night last night, sick, completely sick. Of course, Owen just got off antibiotics, I got him his flu shot, and sure enough, by the time we got him home his nose was running. And Tess, poor girl, she was so sick that she had a fever last night, although I'm not sure if the fever was because her front tooth finally broke through and it was on top of the cold. Today her nose was running completely green junk, and Owen's too. I just can't believe how fast these nasty bugs take hold of innocent children. If I could see them and they were something I could hunt down and kill, I would spend every last breath I had finding those germs and killing them.

Other than that, I am kind of glad to see the holidays end. They are always so much more work than I have energy for, and then there is always the let down when it is over. I know that I should be getting into it more because I have kids, but for me, Christmas has always been a disappointment. Except last Christmas, when I was pregnant with Tess. All I wanted to do was bake cookies, and make new dishes, and I was so happy to be pregnant. Owen was just young enough not to understand the whole Christmas thing, but old enough not to mess with the decorations. And my house, my beautiful little house in the Hollywood Hills. It was so charming when we decorated for Christmas, and it just had that magical feel. I wonder if our new house will ever have that magical feel? Maybe once we get the living room done and we can actually have a fire in the fireplace, and maybe when we have a backyard so the kids can go out and play. I know it will happen. I have to remember that my house in the hills was not complete either when we moved in. It was exactly the way I wanted it when we left, but it was a long road to get there, too.

I always get so sentimental as the year closes, and the New Year approaches. I feel as if there is so much promise with a new year, as if there is a clean slate waiting for me to begin again with. I have such high hopes for this next year, for a new direction in our lives with a new house and neighborhood. I hope my kids stay healthy, and alive, and that we are there to see them through to the end of 2007.

May your new year be safe and happy...

It's Christmas Time

2006-12-23T15:22:00.000-08:00

I’m home alone right now, in the new house, and it seems so nice to have some time to myself. I got a chance to work out, which I feel as if I haven’t done in ages, and have a minute to write. I feel so out of sorts these past few days, and feel as if something is wrong with me. Maybe it’s just mental, maybe it’s because of the holidays, maybe it’s because of the move. Both Erik and I stressed out so much over this move, Erik got a bad case of the hives, and I had a major panic attack the other night, complete with chest pains. I went into the doctor yesterday, just to be sure I was okay, and they did an EKG, which came back fine. But, I’m now worried about the other thing I went into the doctor for: my hands keep falling asleep. Now, I work out quite a bit, as well as walk, so it’s not like I sit in front of the TV all day. I move around, so it can’t be a circulation problem. It’s been getting so bad that I wake up all night long because of it. It’s been going on for at least six months, and I thought it was because I was bringing Tess into bed with me and she was sleeping in my arm, thereby it would fall asleep. But it seems to happen during the day too, when I am holding things for any length of time. For instance, when I hold my cell phone to my ear with the same hand for too long, or when I hold the stroller with both hands for a long walk, or when I lift weights. I don’t know what it could be, but the doctor seems to think there is nerve damage somewhere. She said the worst case scenario could be MS, which of course, made me totally freak out. But I can’t let it get to me. I am going to see a neurologist in a few weeks, who hopefully, will be able to tell me it’s just carpal tunnel syndrome. I really am a hypochondriac almost all the time, but this time, this has been going on too long. I usually give myself the two-week rule, and if it’s gone in two weeks, then it wasn’t really anything. But this, this has been for quite some time. I thought it was because of being pregnant, and then having surgery again (my second C-section), and my body hasn’t feel quite the same since. Of course, I am three years older than when I had Owen, so my body has aged.

I just want to be happy again. I want to go back to the time when I was living in my old house on Bennett, I was pregnant with Tess, and Owen was 2 years old. He was so cute and little (and didn't throw temper tantrums), and I could still be in my imaginary world where everything was good and people were nice. I felt good, I was happy. Now, we are in a different house, which I know it will take time to get used to, and Owen is older and Tess is almost a year old already. It’s as if time has sped up and I’m not even being given a chance to enjoy it. What is it about being pregnant that makes me relish the time; makes me able to slow down for a little while more than I normally would? I have that sense again, that something bad is going to happen, to me or my family. I just can’t shake it, and I wonder if part of it is because I recently stopped breast feeding Tess (not because I wanted to, but because she refused to feed from me). I have that feeling again of not being in control of my life, as if it is spinning out of control and I can’t stop what’s going to happen. I think it’s got to be just the hormones that are leaving my body.

So in two days it’s Christmas. I can’t find the stockings that I have for Erik and the kids, so I suppose we’ll have to do without this year. We did get some presents for the kids, Owen is getting a child’s guitar (he loves to pretend he is playing the guitar), and Tess is getting a little bike that she can sit on and move with her feet on the floor. I haven’t gotten Erik anything yet, and of course I still have to shop for food for Christmas dinner. I know I should appreciate the holidays a little more now, especially with my kids being young, but I feel as if I haven’t had any time to bake cookies, or make soups or stews, and I haven’t had a chance to really relax and enjoy the warmth of the holiday spirit. It really is one of the hardest times to move into a new house, especially one that isn’t finished. I can barely find my clothes, let alone my recipes and my bakeware. I suppose it will be different next year, and we will have settled in by then. Perhaps even having Christmas dinner here in a few days will christen the house, imprinting our home with laughter and cheer.

Back Online

2006-12-16T10:54:00.000-08:00

Finally, we have moved into our new house! It's not finished, but we have a working kitchen, some living space and a fully functioning bathroom. At last, we finally out of my mother-in-law's house and in our own. I never thought I would survive living with her. It was constant nagging from morning until night. It's amazing how bad someone can make you feel, and all you are trying to do is keep out of their way. At least we are in our own home now. Owen had to go on antibiotics because his cold would not clear up, and why should it, when they kept their house so cold. The windows leaked cold air everywhere, and they would turn the heat up and open the windows. I know it's not the coldest part of the country, but when it's 40 degrees at night, that is still pretty cold to have the windows open. I thought for sure I was going to get sick.

The new house we are in is so airtight that no cold leaks anywhere. We set the thermometer and that is what it stays at. I am still trying to sort through things, but at least we have much more space to put things. And, finally, we have our internet service running. At least now I can keep in contact with the world.

I went to Owen's school the other day to make a Christmas stocking for him, sort of an informal parent-teacher morning. I was talking with the teachers and they were telling me that they are so proud of Owen and how far he has come. They really see a lot of progress with him. One of his teachers told me that having seen the progress Owen has made, makes her feel so good, and that "kids like Owen are the reason I teach." It made me feel so good to hear that. Both of them said that they believe Owen is very high functioning, and understands everything that is going on. It's just that he doesn't talk as much as the other kids. I wonder if my child will ever reach the "why" stage like so many other kids his age have. He never questions anything, never asks why. Is it that he doesn't need to know? Is it that in some weird way he is okay with the way things are and doesn't need to ask why?

It's funny. I see other kids his age and how much more verbal they are, and how much more aware they are of their environment (throwing tantrums because they want everything they see, telling their parents what they want Santa to bring, etc.) but I see in Owen a calmness, as if material things don't matter. He never asks for things when we go to the store. He doesn't scream and cry if I don't buy him something he sees. I wonder why that is. Of course, my MIL says "well, it must be a Down Syndrome thing." Excuse me? Just because he's not programmed to want every toy and gadget he sees, and scream and cry for chips and ice cream( well, okay, he will scream for chips, but that's about it). I just want to scream at her that maybe it's because we haven't taught him that it's okay to have every little toy and thing just because everyone else has it. Maybe it is a Down syndrome thing, but who cares? My child is much better off for it, then.

I will try to post more often, now that I am back online and settling into my new home. Hopefully, we will be able to get a Christmas tree up, but without much furniture, it will look a little funny...

Happy Thanksgiving

2006-11-23T10:59:00.000-08:00

This morning I got up with kids and tried to start packing. We have one week to move into the new house, and the new house isn't even finished. We will have to live downstairs while we wait for the bathrooms upstairs and the carpet to be put in. My husband even suggested we live with his parents for a few weeks, which makes me cringe. Not that it probably isn't a good idea, but I don't know that I can do it. I put up with enough criticism from his mom, I can't imagine being with her 24 hours a day. And, I took the next two weeks off so I could pack and move, and that would mean I would be stuck in her house with my kids (with an ungated, uncovered, unalarmed black bottom pool in the backyard).

And by the way, Tess is crawling, yea! She is moving and grooving, and trying to stand up already, which makes me nervous because I really don't want her to walk too soon. Owen took so long that we got very comfortable with him being mobile by the time he was walking. With Tess, I feel like she is trying to do new things every day and of course, she's not nearly as cautious as Owen, so she falls more.

Not to mention that having a crawling baby among packed boxes of stuff is not the best thing. I really do hate moving. We lived for so many years in my parents house, and then when I moved out here I spent at least 2-5 years in each place. Since Erik and I have been together, we have moved four times, not including a move out of the this house for three months and then back.

I was so sad the other night about leaving this house. I broke down and cried. I just love this house and the memories we have made here. It was the house Erik and I moved into right after we got married, and then we had Owen here and Tess. I know the other house will be great, and we will just have to make new memories, but we will be so out of sorts for a while until the construction is done that I am just not looking forward to it.

I suppose in a few months everything will be okay. By that time, we will have adjusted, and at least we didn't have to move into a temporary apartment. We will be able to walk to the park and the library. So what if I have to be gone with the kids for most of the day? I suppose life could be worse.

Happy Turkey Day to all...

Some Recent Photos

2006-11-11T18:21:00.000-08:00

I feel like I never post pictures, so I thought I would do that today...Tess is now 9 months old, and finally crawling! She's so cute when she gets going. Owen is 3-1/2, and talking up a storm ever since he had the tubes put in.

Why So Stubborn?

2006-11-08T18:48:00.000-08:00

I don't get it. When God was making our children, what was He thinking when He decided that they should have the stubborn trait? What was that all about?

Today, I picked Owen up from school, and the teachers went on, again, about how stubborn he is. And it's not just my child, every child with Down syndrome seems to have this stubborn streak. It's as if that extra chromosome gave them some extra stubborn juice, or something. I know exactly what his teachers meant, too. Even though he is very capable of doing something, he won't. He refuses, and he looks away, as is by avoiding looking you in the eye, he can get away with it. I hate it. I wish that God had thought a little harder about our kids when he did that. I mean, really, they will have a tough enough time as it is in school, so they have to be stubborn on top of it??

Then I thought about it for a while. And I thought, you know, our kids are just more real than other kids, more honest. They won't follow the rules and do what they are supposed to do because they don't work from a place where they realize they must abide by society's rules. So they refuse to cooperate if they don't want to do it. Is that so wrong? Why am I trying to fit my child into the universally excepted idea of what a child at 3 should be doing? But I suppose at the end of the day, I do want my child to fit in and to succeed. I want him to be able to be liked by other kids, and by the people in his life. I mean, we love him to death because he is our child, but when he is being stubborn and refusing to abide by certain rules that our society dictates, how will other people view him?

I suppose I should be more like my husband and not care what people think, but I know that it does matter. Maybe Owen and Tess will be lucky enough to have inherited Erik's amazing sense of self-esteem, and it won't matter to them, either.

My Little Conversationalist

2006-11-05T08:34:00.000-08:00

I haven’t written in so long; the days just sail by. It’s so hard to find time to write when I just enjoy sitting with my kids, reading, laughing, playing ball, or even just watching TV. I know that Owen watches a lot of TV, but I can’t help it. There are times when I just need to put him in front of it to have some time to myself. Like now. We spent two hours in the park, then when I came home it was diapers, and potty, and lunches and milk and laundry. Finally, Tess has gone down for a short nap, and Owen is watching Nemo.

It’s amazing to me how much his language skills are picking up. He now says “Memo” for Nemo, when before, he would never say it. He is starting to say, “Owen,” sometimes, and I love when he says, “Mommy,” although he says “Bobby,” instead of Mommy. But I am so thrilled that I always answer, “Yes, Owen.” In fact, the other day, I had a revelation. I had picked up Owen from school, and as I always do, I ask him how school was. He never gives me a straight answer, but he will say, “Bobby,” and I say, “Yes, Owen,” and he says, “Flowers…sun…trees…” And I say, “that’s right Owen. The sun makes the trees and flowers grow.” A minute later, “Bobby.” “Yes, Owen,” I answer. “The fishes are swimming in the water,” he says. And I smile and say, “that’s right, Owen, the fish swim in the water.” And our conversation goes on. And I really feel as if I am conversing with my son. Not everyone would understand that we are having a conversation, but we are. And I am so proud of him, that he is communicating with me, that it makes me feel as if I too, get a chance to experience what motherhood with a typical child is like. We had our MOMs support group the other night, and I told them how amazed I was that he is able to communicate, and not just through sign and gesture anymore.

I also realize lately that we as parents of children with Down syndrome are getting robbed. Robbed of our ability to be able to enjoy our children, and expect more of them. I can’t tell you how many times we have all commiserated with each other because we thought our children would not be able to do anything, or if they did, it would take them forever to do it. Yet, my son walked at 21 months, potty trained the same month, and has had numerous milestones much sooner than the medical community led me to believe. The medical community seems to enjoy painting the dark, horrid picture of how miserable our kids’ lives will be. But what they don’t point out is that, given the time and the patience and the love, they can succeed in a timely manner. Why do they do that? Why are they so insistent on making us feel bad for having our children? What is so wrong with having a child who is all about love?

Tess is really moving around now. She’s not crawling yet, per se, but she is trying. She goes up on her knees, then lowers her back, and combat crawls. She’s doing exactly what Owen did, and pretty much in the same timeline. Owen combat crawled at 10 months, then really crawled at 13 months, and Tess is 9 months. I do hope that she crawls, and doesn’t just skip right to walking. It’s funny, though, to me she seems to be reaching milestones the same as Owen. She has to go through the same learning pattern as he did. In my mind, I guess I always thought that when I had a typical child, they would just up and crawl, like magic; no steps in between, no learning curve, just a leap forward. I have to say, though, I am so lucky to be able to be home and enjoy watching my children grow. So many parents don’t get that chance, and they miss out on it. I see how fast Tess and Owen have grown, and I know in a matter of years, I will be wishing they were babies again. So, for now, I’m going to fill myself up with every moment I can.

Not my fault...blogspot was down

2006-10-28T12:51:00.000-07:00

Okay, I tried several times to post, but every time I couldn't get on. So, here is my post from October 25:

Tess is nine months old today! I just can’t believe it, where did the time go? She still is not crawling, but she’s definitely moving around. She can get in and out of sitting now, which is something Owen was never able to do. He still looks a little awkward when he does get up, as if he is doing something backwards. I never noticed until Tess the bent leg thing. We were shown by our PT when Owen was young how a typical child gets in and out of sitting. They start with their legs out, then bend one leg to the side, in order to position themselves for the next move. Owen never did that. In fact, he had never been able to bend his legs backwards and sit that way, as I see almost every child do. And yet, he is so flexible everywhere else in his body. It’s as if he brain was rebelling and said, “I’m not going to do the one pose that will make your life easier…”

So, we went to the park the other day, in the late afternoon, as we have been doing quite a lot. When both of us are working, Owen gets stir crazy in the house all day, and just needs to get out. Erik and I both understand that. We have been going to a new park where there is a trail all the way around, so that I can walk with Tess and Erik can play with Owen. It’s a great way for all of us to get some fresh air and exercise. The other day, we got there and I sat with Tess for a moment because I wanted to finish reading an article in the paper. I wasn’t quite sure I was motivated enough to walk, so I was going to read for a little while. I noticed two moms sitting near me, and one of them I had seen before at the park. After I had finished reading the article, for some reason, I caught their conversation. They were talking about the CVS test, because I heard the one mom say it. I was still, trying to hear what they were saying. I saw the one mom sort of look around before she leaned in a little closer to tell her friend this: “I had the CVS, it’s the earlier test. I did that one because I would find out earlier. I mean, if it happened, it would be painful and really sad, but at least know one would know I was pregnant.” My stomach lurched. She was so cocky in her description of her plans to terminate if something was wrong, that I wondered, would she ever tell her little girl that she thought that way? That she was alive based on the result of a test? Then it hit me that they were talking about this because they had seen my little boy. They had seen Owen playing at the park. Otherwise, how random could it be that they were talking about a test that was specifically for Down Syndrome?

I got up to walk, because I couldn’t stand to be seated near them. I hate those secretive little conversations that people have, as if it’s their own superiority that makes them a better judge of a child who isn’t born yet. So I started walking, and suddenly, the world looked different. It was such a beautiful day, but I felt as if everything was tinged in sadness. I felt as if people were so afraid to have a child who was different, that they went out of their way to make sure that didn’t happen. Then I saw a woman playing with her dogs, and I wondered if she checked to make sure her dogs had perfect chromosomes. Does anyone check their pets? No, we just accept them and love them for what they are. Why is it that we accept so much more of our pets, than our children? Why is it that we treat our pets better and allow them the chance to live and have a life? Yet we can’t stop the testing, the perfection, the starting over from scratch if things don’t look like they will be perfect. It’s so sad.

No More Vacations This Year

2006-10-16T08:21:00.000-07:00

Erik and I just got back from the Ojai Film Festival, where we were able to actually have an adult weekend together. His mom watched the kids, and, of course, I was fearful every minute that something would go wrong. She's really great at taking care of the kids, I think I'm just so paranoid in general that it doesn't matter who takes care of them.

Friday night, we had dinner with Laszlo Kovacs (cinematographer who shot "Easy Rider") and his wife, and Malcolm McDowall joined us for dinner. He was presenting the award to Laszlo the next night. He had a lot of great stories to tell, and we had dinner at Suzanne's Restaurant, which was so good. Then, we had a chance to spend Saturday golfing, which we have been able to do so rarely. On Saturday evening, it was the awards, and Bill Paxton showed up to support the filmmakers. They had dinner set up at an estate, and it looked almost like a wedding party. Then, back to the hotel for a much needed 10 hours of sleep! How wonderful that was...

When we got back, Tess was so happy to see me. She couldn't stop smiling at me, just beaming from ear to ear, and I almost wanted to cry. Of course, Owen was more interested in watching the Wiggles. But even so, I never knew Owen to be so happy to see me. Tess gets so upset when I leave, and she is so happy when I come back and smile at her. She had this amazingly beautiful smile, and her eyes just crinkle up when she uses it. There is a part of me that knows that Tess is so much more present, more than Owen was. Owen was, and probably still is, a little bit in his own world. Things just don't catch his attention like they catch hers. In a way, it's good, I guess, because maybe that's why children with Down Syndrome are so happy. Their world is a little more fuzzy, a little more rose-colored.

It's nice to be home, though, and to settle in. Our house is in escrow, so the plans to move into the next house are in motion. I can't believe we are going to leave our little house in the Hollywood Hills soon. I have loved this house so much, and we have made so many good memories here. But, it is time to move on. We really need to space, and the area and the schools, and how great will it be to be able to walk to the park, and the store and the library?

Back from Michigan

2006-10-10T21:30:00.000-07:00

I can't believe that we are already home again. I feel as if I spent too much time there, and not enough. It's amazing how different it is to visit family when you have kids. With kids, every second is taken up with making sure they are fed, clothed, changed, and overall feeling okay. When I used to go home to visit, I would spend the time hanging out with my sisters, maybe go shopping, spend some time writing, and ponder my life when I lived in Michigan. Now, I feel as if it's: wake up with the kids, throw a cup of coffee down my throat, feed her, feed him, have a piece of toast, change them, think about running some errands, maybe make a phone call (are you kidding?!)...and on and on. When I was home, I barely got to have a full-fledged conversation with any of my family, because I was only listening with half an ear. The other half was making sure that the kids were okay, and I even have a husband who watches out for them! The problem is that I am so over-protective of Owen. It seems that everywhere we go, there is some danger lurking, especially stairs. I am so paranoid that he is going to die under my care, that I overthink everything. I can't rest for one moment!

What makes me the most sad is that I get to spend so little time with my parents. They are in their 70s, and who knows how long they have left, especially my mom, who has had multiple health issues. (I guess after 11 pregnancies and nine babies, there might be some issues...). But every day seemed to be as if we were running around, not really stopping to enjoy ourselves, although Erik did make sure we went to the park with the kids. The weather was beautiful. I really can't believe we had such amazing weather. The day of Tess' baptism, it was almost 70 degrees. I mean, this is the first weekend of October, that never happens in Michigan (although, with this whole global warming thing, of course it's almost 70 degrees in October in Michigan!). We had an amazing day, and the ceremony was beautiful. The priest, who has married all my sisters and done Owen's baptism, knows my family really welll, which made it that much more special. As he was doing the ceremony, he did what was a sort of homily, about what we need to give Tess. He reminded Erik and me that we need to always show Tess what love between a man and woman is like: we need to love each other and show affection, and respect, and take time out for ourselves as a couple. Otherwise, our daughter will never had a good role model to base her own relationships on. He also told us that we need to instill confidence in her; if we do that, she will be fine. He pointed out to Erik that as much as a mother has a guiding influence on her daughter, sometimes it is the father who shapes the world she will call love. That is so true. It made me realize how much our children learn from what we are. I look at my parents and I see how much they still love each other; how much they need each other. I hope that Erik and I are like that, so that our children can learn from example.

I'm always happy to come home, and be back in my own life, but I miss my family terribly when I leave. The day we left Michigan, Erik and I took the kids for a walk to the park before we had to get on a long plane flight home. I told him that as much as I love my family, there is something about Michigan that makes me feel claustrophobic. I can't explain what it is, but I always feel so much better when I get back to LA. Maybe there is something in my past that I haven't addressed, and it still haunts me.

Everyone was so in love with Owen. They all marvelled at how much he was talking, or trying to. He really has begun to say a lot more words, and also to put words together. I just love when he says "Mommy," so much, that I always answer, "Yes, Owen?" and then he says it again. I never knew I would be so thrilled to hear him say it. But I am. I'm sure Tess will say it a lot sooner, and a lot easier, but for me, Owen is so incredibly special that I really do celebrate every milestone.

When we got back home, we came into the house (which was so quiet, compared to all the loud voices of my family), and Owen went into the den, sat down in front of his bookshelf and took some books down to read. He seemed genuinely happy to just immerse himself in his books and the quiet. I can understand that. After I come away from my family, as much as I love them, they are so very loud, all competing to be heard above the other. Owen was so overwhelmed at the party that he wouldn't let go of Erik and then fell asleep in his lap at 4 p.m. and slept until the next morning! But I have to remember that Owen is a gentle soul, and he needs his quiet, and his space. Perhaps he is more like me that I know.

It is good to be home. And now, I must attend to my fundraiser for Down Syndrome Research. I will update you all soon on that.

Failure to Blog

2006-09-27T20:58:00.001-07:00

Today is Wednesday, of that I am sure. It is also September. Other than that, the month will finish and the year will finish and soon Tess will be a year old and I will be wondering what happened to the time.

Today, at work, we had a group in who was interested in some historical items. We also have a theatre, so we showed some 70mm films that we have, including one reel of "Ben Hur," that was restored. We also showed "A Year Along the Abandoned Road," a 70mm film, 15 minutes long, which was shot in time-lapse. It shows a summer town in Norway that is typically abandoned during the winter, because it is so far north and too cold. The whole film shows the passage of time in time-lapse, so the summer people are shown in fast motion. You see the heavy, snow-filled winter, then it passes into spring, then the summer people come, and then the winter comes again: barren, cold, lonely. Every time I see this film, I feel sad. Sad because it is about the passage of time and the inability to slow it down. It shows how nature continues to cycle in it's seasons, but we as people are secondary, because we are just a few moments in the overall picture. The summer people came and went, and their laughter echoed for only a moment or two before nature resumed it's pattern.

I wonder how long before I am looking at my grown children and wondering where the time went. I think of how I would like to be pregnant one more time, but am not sure that nature has not passed me by already. I will be 40 next May, and I am still breastfeeding Tess so I have not gotten my period again yet. And if I continue to feed her, I won't get it until I am absolutely done breastfeeding. And I love breastfeeding (yes, I am one of those women...). So therein lies the dilemma. I'm not getting any younger, but I also don't want to wean Tess just to try to get pregnant again quickly. What would I do if I got pregnant again right away, anyway? Wouldn't that be pushing the age difference a little bit? I would hate for Tess to get stuck being a middle child who got overlooked because we had another child right away.

So it goes. We leave for Michigan next week, and I'm so excited to see my family. I haven't seen them since last August, when I was four months pregnant. I've seen a couple of my brothers and sisters, but not all of them (I have 5 brothers and 3 sisters, and numerous nieces and nephews). We are having Tess christened when we go home, by our family priest. We did the same for Owen two years ago and it was a beautiful ceremony. We held it at my sister's house, where we will have it again. I'm a little (no a lot) nervous about flying, though. I haven't flown in over a year, and I'm pretty much a white-knuckle flyer now. I can't help it, there is too much going on in the world for me not to be scared. But at least I will be with my family, and I will get to be with my sisters, who I have missed so much!

By the way, Tess got her first (and second) tooth! Both bottom teeth came in at the same time, and she didn't have any problems. She had no fever, no rash, and wasn't fussy. Although, she is trying to bite me a little bit. Owen got his first tooth at 10 months, and it wasn't the bottom front tooth, it was off to the side. I suppose the Down Syndrome kicked in, because they say their teeth are always late and irregular, although Owen has pretty nice teeth, for his first set.

Have a great week everyone, signing off...

Failure to Blog

2006-09-27T20:58:00.000-07:00

Life Has Been Busy

2006-09-19T22:34:00.000-07:00

It's been crazy for me lately; obviously, since I haven't posted since Sept. 11th, and it's now Sept. 20...I think. See, I don't even know what day it is anymore! I had to go to the Big Bear Film Festival this past weekend, so Erik drove up with the kids on Saturday. I got to spend Friday night at the events, and was there for the Awards: Vilmos Zsigmond, ASC, the cinematographer who shot such great films as "Deliverance," "McCabe and Mrs. Miller," "Close Encounters..." and most recently, "The Black Dahlia" was getting an award. Also, the director Martha Coolidge was there. It's so nice to go to these small film festivals, because the filmmakers get to hang out with more notable filmmakers. Martha Coolidge was just hanging out, watching films.

On Saturday, though, it was family day. We took the kids to this little zoo they have up there, right at the base of the ski lift. It was great. The animals are all injured in some way, but the exhibits are very natural, and they are very close, so you can actually see the animals. They had wolves, bears, coyotes, leopards, foxes, bobcats, owls, all kinds of birds, and other wildlife. I liked it much better than the LA zoo, because the animals are so far away you can barely see them. And for Owen, it's much harder to see them since he doesn't know what he's looking for.

Then, Sunday morning, Owen fell down the stairs and scared the living daylights out of me and Erik. See, we were staying in this two story condo, and they had the living space upstairs, so there was a door at the top of the stairs. Owen snuck behind Erik and started going up the stairs, which he has been feeling pretty confident about lately, and no sooner did I say to Erik to go get him than he tried to open the door, lost his balance and fell down the stairs. I actually didn't feel like he was really hurt, and for the first ten minutes it didn't register that my son had just fallen down the stairs. They were heavily carpeted, but still. He cried for a few minutes, and then he seemed okay, but we watched him closely all day. He didn't get tired, he didn't sleep, his vision seemed normal. We looked for all the signs. Erik felt bad about it all day. I had mentioned to him that the thing that scared me the most is that he could have broken his neck and been paralyzed (that's me, always thinking the worst), and that stuck with Erik. See, he has been trying to allow Owen some freedom, to explore and learn how to do things. But I told him, we have to accept that our child is not like other 3 yea-olds. He has Down Syndrome; he will not be able to climb the stairs for a long time and we must respect his limitations. We both want him to be like other kids, I know that. But when it comes to safety, I am always so cautious with him because I know that he cannot do things like other kids his age. I told Erik that maybe I should call the pediatrician and he said, "why? He seems fine. They are just going to make you bring him in so they don't get sued by telling you what to watch for and not seeing him." But then I said, "but what if I don't bring him in, and weeks later something happens? What if they send social services to our house and take our daughter, thinking we abused our child? I mean, look at what happened to Britney Spears." Of course, I never did call, because he really has seemed fine.

So, things have been crazy busy, and I can't seem to get things done. It's one thing after another, if it's not work, it's life stuff. Tomorrow we meet with the regional center and our new coordinator. I'm going to see about getting a behaviouralist for Owen. And, I'm going to ask about respite again. It seems that everyone else is getting it, but not us. One of my friends with a child with Down Syndrome said, "Suzanne, you got to stop being so together. I mean, really, they will never give you services if you are doing so well." I laughed at the time, but I am having my moments. Moments when I feel like I will lose it if I don't get away and breathe. In fact, my moments are coming my frequently, when I really just wish I could find one hour to myself each day. Just one hour to go for a walk, or write, or just sit and do nothing. Maybe in about ten years I can have that??

Thoughts on 9/11

2006-09-11T21:56:00.000-07:00

I know that today we are all thinking of 9/11 and our lives since then. I have been. I have only been able to think of the last five years and how 9/11 has defined our lives. I remember after it happened telling my mom that I didn't want to have children, that the world was so horrible, why bring children into it? And, of course, the next year, we got pregnant with Owen. But we got pregnant with a child who only knows love, who, despite his inability to be good at the same things as every other child, has a special gift for giving love. I watched him today as he walked over to Erik's dad and gave him a hug. His grandfather hugged him, and I heard him say, "I love you very, very, very, very much. You are so special." This is from a man who has never hugged his son in the 12 years that I have known him. But our little boy is able to bridge that gap, to bring out aspects in people they forgot they had.

We lit a candle tonight, my husband and I, and sat on our porch, with a glass of wine. "May they all be partying in heaven," I said, as we toasted. And I meant it. May they have gone to a better place, those people who began their lives the same way we all did that day, not knowing that it would be their last. I cried when I watched the news, people talking about their loved ones who they still miss, five years later. People who will never forget the sounds and smells of that day, and people who will always remember the person who didn't come home that day.

I was supposed to fly to Amsterdam on September 12 that year. I had an uneasy feeling about my trip, and I coudn't quite shake it. My brother called me from Michigan that morning, yelling into the phone to my husband, saying "my sister's not on a plane, is she? She's not on a plane??" Erik wasn't sure why he was so upset, but we hadn't turned on the TV yet, and it was still early, about 8 a.m. LA time. When I got on the phone with him, he filled me in on what was going on, but I realized what an easy mistake it was to make. I had told my family I was traveling to Amsterdam, and of course, you never really pay attention to the dates, until something like this happens. I was glad that my trip was cancelled. I had no desire to go anywhere, not even to Michigan. I just wanted to stay put.

Are we any better off? I don't feel safer. I feel as if the world is more unsafe today than it was then. I feel as if our country is being run by someone who could care less about anyone else but himself. But I don't want to talk about stupid people. Bush doesn't deserve space on my blog. But I wonder why, with all the money and intelligence our country has, why we can't just get it right. Why we can't just secure our nation; instead, we're busy using our money to secure another nation....but I digress.

I just hope that there is a better future for my children. I hope that they can dream any dream they want, and be able to follow that dream, with a security and freedom that should be their birthright. I hope that's not too much to ask...

A Few Minutes to Myself

2006-09-08T17:36:00.000-07:00

Finally, it's Friday afternoon, the baby is sleeping, and Erik took Owen to the park. How heavenly! A moment to hear myself think...

Things have been busy. First of all, I have to say that I am so glad we got tubes in Owen's ears. I have heard him saying words that he wouldn't say before, and the other day he even said "baby Tess." He has never said Tess, only "ess" when I asked him to repeat it. He definitely is hearing more of the world now. Also, he has had sleep issues for months now, where he would wake and come into our room, fall asleep, then wake again. This was really wearing on me and Erik. The baby was sleeping better than he was! Right after he got the tubes, I was reading a book on sleep issues, and it said that one of the first things you should have checked is the hearing, because if your child has fluid in the ears, it can make them uncomfortable enough to wake them up night after night. Sure enough, the last three nights, he has slept through the entire night for 11 hours. He wakes up bright and cheery eyed, and comes into our room then, but I feel so rested that I don't care. I am hoping that it really was the fluid in his ears. And, they say that when kids are more well-rested they perform better during the day. We even think his balance is better. He seems to be running around a lot more, and just more active in general.

Other than that, Tess is an angel. I really can't describe her any other way. She is so sweet and calm all the time. She might fuss a little bit when her diaper is dirty or she is tired, but usually she is just so sweet. When anyone pays her any attention, she just starts with this slow smile that grows into a big grin. Her eyes smile, too. She is so happy just to be here, I think. She loves Owen, too. She laughs when she sees him, and just follows him with her eyes. I hope that she will always adore him, because that is how a little sister should see her big brother.

She's been such a good sleeper, too. Lately, when she is tired, right after dinner, I put her down at 6:30 p.m., she talks to herself for a little bit, then she's out for the night, until 7 a.m. the next morning. Well, I do feed her right before I go to bed, but she doesn't really wake up, she just nurses and goes back to sleep. I'm not sure if I'm supposed to still be waking her up to nurse, but I really don't mind, and she sleeps all night, then. I wonder what age I'm supposed to stop doing that? Owen never went to bed before 10 p.m. when he was little, so I always nursed him before he slept.

So the comparisons have started already. I have a friend with a baby who is a week older than Tess, and the first thing my MIL says to me on Sunday is that the other baby is already crawling. "Is Tess doing anything yet?" she asks, which I just can barely contain myself because of course she knows that she is not, since she babysits for her once a week and only saw her the day before. But, it's starting, and as blissful as I was about Tess, all it does is make me start thinking, "Hmmm. Well, Tess is seven months old, why isn't she crawling yet? Is something wrong with her?" But I have to stop. I can't make myself crazy. I don't want her to grow up so fast. I feel as if she just came out of my belly, and I don't want to see her assert her independence quite yet. The mean thoughts have started coming, too. "Why can't my kid be first at something?" I think. I mean, with Owen, we knew he would be delayed, and as much as I don't want Tess to be rushed through babyhood, I hate having her compared to all the other kids. I'm sure I'm going to hear about someone else's baby getting their first tooth already, or saying words early, and I don't know why I care. Why can't I just be happy with my little girl? Why does everyone want to make me crazy??

I guess we are all competitive in some way or other, whether it's our job, or our children, or our looks. I just want to stop it, though. I gave up long ago trying to compete with others in the looks department, and my job is my job, and I have resigned myself to the fact that Owen will never be the fastest or smartest kid on the block. So why doesn't that make me feel any better??

Surgery Behind Us

2006-08-31T10:31:00.000-07:00

We just got back from surgery; Owen had tubes put in his ears. I had a couple of flashbacks to when he got his first surgery, for an undescended testicle, and how we were told the surgery would last no more than 2 hours, and we were waiting for 2-1/2 hours! But I said some prayers, and no more than ten minutes went by before they called us into the recovery room. Owen wasn't there yet, but when they wheeled him in on a gurney with an oxygen mask, even though we knew he was okay, my heart stopped for a moment. It it just such an awful image. I have to say, though, this kid is a trooper. He was awake within minutes, pulled everything off him, including the blood pressure band and heart rate monitor, and was asking for water. He must have drank half a bottle, he was so thirsty. But he didn't throw up at all. Now he is happily playing upstairs with his grandmother.

When we took him in to the pre-op room, I thought for sure once he figured out what was going on he was going to have a fit. But the anesthesiologist was really easy-going, and he took to him right away. They put him on a gurney, and started to wheel him down the hall. I had already given him a kiss and a hug. Owen looked at Erik and said "Daddy," in that small-I-might-cry voice, but then Erik said "we'll see you in a little bit, Buddy," and Owen turned around and went along with them. He didn't even turn back to look. I saw a nurse say hello to him and he waved at her. I turned to Erik and said, "he is growing up so fast," because even three months ago, there is no way he would have gone in without kicking and screaming and crying. But, school has definitely helped.

I just hope that this helps him speak more clearly. It seems the one thing we all want for our kids is to speak clearly and be understood. Not a lot to ask for, right God??

Sad News From a Friend

2006-08-26T21:49:00.000-07:00

I just got an e-mail today from one of the moms in our moms group. At the last meeting, she had brought a new friend of hers who was eight months pregnant and had just found out that their child had Down Syndrome. He was a boy who they had named Shawn. She had come to the meeting, and even though she seemed shell-shocked, she was so beautifully pregnant, and she kept touching her stomach, as if to remind herself that she was there because of "her little man" as she called her baby. I could only think how brave she was to be there before the birth of her child (although, to be honest, if you are braving the world of Down Syndrome, there is no better place to start than with the amazing group of moms that we have).

Today, the mom who had brought her sent an email saying that baby Shawn was born, and had died the same day, from pumonary hypertension. He lived for 30 minutes after being taken off the ventilator, and died in their arms.

First of all, I cannot even imagine what it's like to have your child die in your arms, and second of all, I cannot imagine the gaping hole this creates in your life. I mean, she was growing her child for nine months, and then he is born, and then he dies. What can that mean for her? How do you respond to that? I know that she has a daughter, who is around five or so, and how do you explain to your daughter that her little brother, that she probably anticipated for so long, is not going to come home with you? In fact, he's never coming home. He's not alive anymore. How does a baby go from being so warm and alive in the womb to dying in the world?

I always feared that. I always feared that while my child was so safe and protected in my womb, what would happen when they got out? What if they died? I'm sure we all have thought about it. I'm just so sad for this mom. She was so ready to accept her child with Down Syndrome, and to love him, and now she can do neither. Now she must look at a different picture: death. Now, she must readjust her expectations for every part of her life, and what happens next. Now, even though she knew her child had Down Syndrome, she was okay with that, and had begun to cope with it. But death? Who would have thought? I mean, for the most part, our kids do survive, and thrive.

But perhaps in the end, he was not meant for her and her family after all. Perhaps his lesson that he was teaching them, to accept him, was done, and his job was finished. Who knows. It's just said, because regardless, she would have taken her baby no matter what. Now, she only takes home a memory.

2006-08-22T22:02:00.000-07:00

What is it about our kids that you just want to capture them exactly as they are every second? And then they keep growing, and you just want them to hold still, and stop, and be a baby for one more day. I thought that by working part-time I would have more than enough time at home with my kids, and that being able to go to the office would be a blessing for me. But it's not. I still want to stay home every day, and this weekend I am leaving to go to the Palm Springs Short Film Festival and I can't imagine how I am going to get through two days of not being with them. (I also wonder how Erik will do with them for an entire day through the night...).

Today, I got ready to go for work, and when the babysitter came, Owen ran to her and gave her a big hug, and then Tess looked up at her and gave her this warm small. Tess has the greatest smile. She smiles with her eyes. When she looks at you and her smile spreads slowly up her face, and her bluer-than-blue eyes light up, it makes me catch my breath. She is going to be some beauty. I have had so many people stop me and tell me how beautiful she is, and of course, I am biased. But they really mean it. Erik said to me the other day that she is "model beautiful". All I know is that I am so in love with both of my kids.

I watched Owen tonight as he leapt onto the couch, pulling himself up onto the pillows, then did somersaults across the couch, and finally lowered himself on the floor, where he proceeded to roll a couple of times on the rug, (all while wearing his cute little "Finding Nemo" underwear), and I was amazed at how lithe his body is. I was amazed at how much he can do with his muscles, and his balance and his knowledge of his place in his little world. All from a little man who we were led to believe would be nothing short of a village idiot, sitting in the middle of the floor, rocking. I can't wait for our kids to prove themselves, to mock the medical community with their ability to be someone who can excel, who can be a part of society, who can matter.

And the way he makes Tess laugh. Sometimes he throws toys at her head (yes, I'm trying to stop that), but Tess screams with laughter when he does. She thinks everything about him is funny. She lights up when he comes into the room and turns his attention to her: as do we all. He is our joy, our light, our reminder that nothing is ever as it seems.

A Changed Boy

2006-08-18T13:45:00.000-07:00

I know I haven't posted about Owen and the whole school situation, so here is what is happened. As soon as I had the talk with his teacher, I went to the bookstore and bought the Supernanny's book (I really liked her show) and began reading it. By the end of the next day, my husband and I had decided to implement some of her disciplinary tactics, including getting down in his face and speaking to him in an authoritative voice, when he would throw something or start whining. And, guess what? It worked. We also gave him some responsibilities, like brushing his teeth, and putting his dish in the sink when he was done, and he has a little chart that he gets a star when he has done something right. We also have begun to praise him for being for just being a good boy, or for sitting at the dinner table well. In other words, we have been giving him more attention, but the right kind of attention, not just yelling at him to stop throwing his food, or the crayons, or his toys.

We began implementing this on Friday of last week, and that gave us three days of working with him before he returned to school. When I went to pick him up on Monday afternoon, the teacher came out and started telling me what a joy he had been in class and how excited she was about his attitude. She said he even colored without her having to hold his hand with the crayon in it. I was happy. Then, the next day, when I picked him up again, she told me that she is seeing progress with him and she is excited about teaching him. It was a whole different attitude, and apparently Owen is a different child in class from the previous week. I was so happy, and felt much better about Owen being in school. Yesterday, when I picked him up, they told me he actually helped pass out the nametags, and that when they asked what the homework assignment was, Owen answered "circle" which is what they were supposed to color. I was so proud of him. He is doing so well.

So this morning, after Owen went potty, I put him up on the sink and said, "we have to brush our teeth, Owen." As clear as day, he said, "I don't want to." I was floored. There was no speech issue, no rounding of the words, it was said exactly as you or I would say it. My husband heard it too. I had to laugh, but then I made him brush his teeth.

I'm actually a little excited to see what a difference the tubes will make in his ears. He has begun saying "Mommy," but with a very rounded sound, as if he heard the word while he was under water (which, technically, he is if he has fluid in his ears). So maybe things will be a little bit clearer. I know that I'm just so excited about the possibilities, and so excited about the change I have seen in him. It is true for our kids as well as typical kids, they still need discipline and boundaries.

Have a good weekend everyone.

Heavy Thoughts

2006-08-16T15:44:00.000-07:00

August 15, 2006

The days seem to be flying by, and I can’t stop them. I can’t slow down the incessant march of time. I see Tess and Owen both growing up so fast, and I want another baby; not today, but someday. I feel as if I can’t put it to rest, not yet. Funny how I think of my parents and how they just kept having kids, one after the other, and they probably never stopped, I mean really stopped, and looked at us and marveled at us. I mean, here they had nine perfectly healthy, really robust kids, with very little medical problems. And yet, they probably didn’t get to spend much time appreciating the day to day miracles that human beings are. And especially babies. There is so much they are learning so fast. I didn’t see it in Owen as much as I am seeing it in Tess. There is no plateau with her. She is just progressing. And I love them both so much, but I am so much more fascinated by Tess. Number one because she’s a girl, and number two, because she’s so normal. I hate to use that word, but with Owen, it’s true, he is special. And with Tess, she’s so normal that I love watching her progress. I have to admit that there is something about Owen that has always scared me; as if he I don’t quite accept him and he understands that. There is something about him that seems as if he knows too much, as if he knows what I am really thinking. Sometimes I think he knows that if I had my choice, I did not want a child with Down Syndrome, and that makes me feel naked, as if my thoughts are no longer safe. He makes me afraid that he will turn against me one day, that he will confront me with my inability to accept his disability. I feel sometimes as if he is really sent by God, an angel if you will, to test me, to see if I can really hold up and handle it all. I love him so much, and sometimes I don’t think he accepts that. I think he really accepts Erik because he know Erik loves him regardless. And I envy that. I envy the ease between the two of them. A few months ago, I actually considered taking Tess home with me to Michigan and leaving Owen with Erik. Why didn’t I consider taking Owen home? Because I feel as if Tess is more okay with me, as if I haven’t hurt her yet. When I walk into the room, she lights up. When I leave the room, she gets upset. She wants to be with me. Owen never did, and that makes me sad. He always wanted to be with Erik, and I always thought that they had a better connection that we did. Was it because Erik stayed home with Owen, and I am home more with Tess? I don’t know. I just know that I can handle Tess, and there are days that I see Owen as a foreigner, that I can’t get through to him, that even though my body grew him, he is of another world, and not mine. I don’t own him.

I’ve been thinking a lot about death lately; and partially because I have been having my weird panic attacks. I am afraid to go anywhere, or to let Erik go, because I am afraid someone is going to die. I even lately have been afraid to be alone with the kids because I think maybe I will have a stroke or a heart attack and what will happen then? Will Owen sit by himself in the house, and will Tess be there as well? Will she fall over and not be able to get up and will Owen try to help her and hurt her? Will no one know that something is wrong for a long time? I think about how Owen doesn’t have the wherewithal to call someone, or to act. Will he ever learn? I know he is only three, but I hear these stories about kids who are two and call 911, or they unlock the door and go for help. Can I ever expect that from Owen?

I think about death, and I think about sudden death. I think about what will happen when my parents die, and when Erik’s parents die, because it will happen. But what if one of us die? Or what if one of our siblings die? Or our children? Someone who is not expected to die? What then? How do we handle it? How do we handle the curse of life: that death will happen but we do not know when. I get so scared thinking of myself, and Erik and my kids, then I include my family, and it makes me sad already. But I know that I must continue to live every day as I would, or there would be no point.

Some Advice Please...

2006-08-11T17:16:00.000-07:00

I took Owen to school the other day, as usual, and asked his teacher if I could come in and meet the speech teacher. She said okay, and I came in with Tess. As I did, I spoke to the other teacher, who when Erik asked her how Owen was doing she said, "how is Owen doing? How is Owen doing? I'm not sure how to answer that question." So I asked Owen's teacher what she meant by that comment. Then, it all came out. The teacher took me aside and said she's been having a difficult time with Owen and she's not sure this is the right environment for him. And slowly, my faith in the school system begins to crumble.

She told me that Owen has some behavioral issues, especially when he doesn't want to do something he will throw it (i.e., when he doesn't want to color, he throws the crayons). Then she said he will do things to get attention, like get up and run for the door, standing by it while the rest of the class sits and does the lesson. She said she finally started ignoring him and he stopped doing it. But, he has a difficult time with scissors and she and the OT thinks he needs clinical OT (well, duh, don't we all...it's their system that said no), and that she doesn't see any progress with Owen. She told me that he is operating at the level of a 1-1/2 year old. But, she said when it is something he likes, like story time or songs, he does well. "He's very smart," she said, which made me feel happy, all while I am thinking he's going to get thrown out of preschool for being basically Erik's son: smart, but not wanting to do the work when it gets hard.

So we continued to talk, and she told me that we need to start setting limits with him at home and not helping him with things. She told me that we need to expect of Owen what we will expect of Tess. "Look, I'm not telling you how to be a parent, but if you feel sorry for him and you continue to do things for him, it will not benefit him." She's right, but of course, I don't know how to address these things. First of all, Owen has been usurped with a new baby who is breastfeeding, and seems permanently attached to me, and second of all, he is three years old and is just now entering the "terrible twos." So, how do I discipline him?

Oh, and to top it all off, I have realized that he hears very little of what we are saying. The reason I know this is that I have been testing him by saying things soft and loud. When I talk softer, he only catches the one word I say loudly and repeats it. If I say the whole sentence loudly, he repeats it all. Now, I wonder, how much of his acting out is frustration because he doesn't hear us and when he does say things, we can't understand him because he learned the words with fluid in his ears?

I feel as if I have already failed at being a parent. The last two days, I have been trying really hard to insist he do things, like use his fork, pull up his underwear, etc, but I feel as if it's all about me bossing him around and I don't feel as if I can have fun with him. It's as if I have become the general, and I know he knows that things are different.

I just don't know: do I discipline him as a 1-1/2 year old, or do I discipline him as a 3-year old? And to be honest, how the hell do I know the difference, since he is my first child? Lately I've been wishing that he was the second child, so that I already had experience in this whole arena. To top it all off, I wonder if he will ever grow and get beyond this level of understanding. I see so many kids who are 3 years old and they seem like these little grown up people. Will Owen ever be that way? Am I fooling myself into thinking he will be more than he is?

Childish Behavior

2006-08-07T14:11:00.000-07:00

Saturday I took Owen and Tess to Beeman Park in Studio City. I thought I had it all figured out, and we would have this grand day at the park. Owen was so excited that we were going. He kept saying “ark” to emphasize that he knew where we were going. Then he kept saying “daddy,” since his dad always takes him to the park. We packed up and got ready to go. When we got there, I was relieved to see there weren’t very many cars there, since that meant it wasn’t that crowded. I hate when it’s crowded, because inevitably some of the kids gang up on the slides and the younger ones can’t use them. I know it’s just kids being kids, but I still hate it. So we got there and walked to the big slide, since Erik told me that Owen had been going down the big slide by himself. I put Tess in the stroller and watched as Owen walked over to the slide. There were two boys at the top of the slide, about 5 or 6 years old, and they both looked at Owen, who was at the bottom of the slide trying to climb up it and one of them said, “You’re a freak. You’re freaky looking.” Then he looked at the other kid and said, “doesn’t he look funny? Doesn’t he look like a freak?” I felt like someone punched me in the gut. Owen just looked at them, not understanding what they were saying (thank God!), and I just looked at both of them in fear: fear because I know that this is just the first instance of someone calling my son names, the first in a long life of him looking ‘different,’ of kids pointing that out. I picked Owen up from the bottom of the slide, looked at both of them and said, “did anyone tell you that you are ugly?” A little less sure of themselves now, the one boy said, “but he looks different.” I said, “oh yea, and you don’t think you look different? Maybe I should call you a freak.” I know I was being childish, because I knew better, but I couldn't help myself. I really wish I had a better comeback, to be honest, but I guess "ugly" is just as good.

I was pissed, and I was so hoping that their parents were nearby so I could walk up to them and say, “how old are your boys? Five? So it starts that young? So they are already bullies this young?” but I couldn’t find their parents. My stomach was in knots at this point, and all I wanted to do was kick the kids, and tell them that they would amount to nothing, because who gives them the right to tell my child that he looks like a freak? But I took a deep breath, and brought Owen up to the slide, and slid down with him. Then, he seemed to get a little more confidence, because next thing I know, he was climbing the slide by himself! By this time, the two boys had run off somewhere else, and all I could do was forge ahead. I wiped aside any emotional thoughts about the whole thing, and just concentrated on making sure Owen could play. At different times, older kids would come by and just want to use the slide, and I was just so taken aback at how rude they were, saying “can you move that little kid, he doesn’t belong on the big slide,” and then barreling on through as I was still trying to get him out of the way.

When Tess started crying, I was relieved. At least I had an excuse to leave the park. I had given Owen an hour of playing and even though he didn’t know anything was wrong, I was heartbroken. But I didn’t cry. Not until I was miles away from the park did my eyes water with tears and my throat hurt from trying to hold them back. I called Erik as I was leaving the park and told him what happened. I told him how I feel as if that park is full of rich kids who don’t know anything better, or how to behave. They are given everything, and they think they have every right to do anything they want without concern for anyone else. I know they are just kids, but I can see it already. Nobody said “excuse me,” nobody was polite, it was as if everything was there for their use only and if you were in the way, well, get out of the way. I told Erik that maybe it’s better that we don’t move to Studio City, maybe we are better off being in Hollywood, integrated with a different kind of society, maybe one that has been raised on manners. Is it my imagination, or am I finding that kids with too much money have no manners, and the Latino kids that go to school with Owen, who probably don’t have much, at least have respect and decency and manners? Do I really want to move to that neighborhood? It makes me wonder if Owen will be shunned by people because he is different. Will people treat him badly and call him a ‘freak’ the rest of his life? I told Erik that I want to have more kids just so they can protect him, and beat the shit out of kids like these when they treat Owen badly. And right now, I know I sound like a bitch, but I really do mean it. These kids may be 5 years old, but they are learning this from somewhere, and they are making it part of their personality. They probably could use a good spanking, at the very least.

And for all of you who read my blog, and have typical kids, please, do your child a favor and teach them to respect other people no matter what they look like. I know what a wonderful child Owen is, but when typical kids are mean, they learn it from somewhere, meaning their parents. If you are going to respond to my post and say that they are just being kids, then I hope I never meet your 'typical' kids, because they will grow up to be people that nobody will like.

I’m tired. I just want to forget what happened today, and I don’t really want to call anyone and talk about it, because I just can’t quite get my head around it all yet.

Finally Posting, Again

2006-08-05T12:37:00.000-07:00

I feel as if it's been ages since I posted, although, in actuality, it's only be less than a week. So many things have been going on, and trying to get down to my computer after the kids are in bed is a major feat, especially since sometimes I don't get finished with everything else until 11 p.m. and then I know I'm going to have interrupted sleep so I quickly get into bed.

We had Owen's hearing checked again last week, and sure enough, he has fluid in his ears. His hearing is flat on one ear, and barely above flat in the other. I cringed as we sat in the soundproof booth and I clearly heard sounds that he didn't even acknowledge. And it's not that he was busy with anything else, there was nothing else to do but hear the sounds. It made me sad that he's been going through life the last few years without being able to hear certain sounds...what if he can't hear the birds singing in the morning? What if he couldn't hear Giles meow (our now gone cat)? And, more significantly, what if he is not hearing certain things I say to him, or songs I sang to him?

So, we will get tubes put in as soon as possible, and of course, the doctor's office that I previously spoke so fondly of (I'm being sarcastic here), still has not called me back to tell me what my next step is. I'm guessing they have filed my son's chart again...so I called Cedar-Sinai and spoke to the person who asked me to be on the parental advisory board and asked her for a referral. She told me she would get right back to me. Within an hour, she had three doctors' names, and I told her that I needed it done as soon as possible, not in three months. She told me that I could use another doctor's name who referred me, and get in as soon as possible. Now, I'm usually not one to cut in line, but I'm tired of being hung up because every doctor's office is overbooked, and/or their staff is incompetent. So, I am going to use my contacts and get it done with a doctor who comes highly recommended. I'm not the first to do it, and surely not the last.

Erik is gone for the weekend, so I have very little time to post. I'll write more later...

To discipline, or not?

2006-07-31T22:49:00.000-07:00

Owen loves school, in fact, today, he ran for the gate where the teachers come to get them. I was a little surprised that he was so ready for school, but grateful. I feel glad that he is embracing it, and not hating it. After school, when we came home, we watched some TV while he had a snack (actually, he ate a whole bowl of pasta, I couldn't believe it!). Then, I told him we had to do his homework. Now, it's only a little bit of coloring, but he didn't want to do anything. He tried to get out of the chair, then he threw the crayons. So I told him that was not acceptable, and made him go over and pick up the crayon. He started dancing around the table, so a little more forcefully, I led him over to the crayon and made him pick it up. Of course, then he started crying like I was killing him, and he picked up the crayon and gave it to me. Then, he wanted me to hold him, so I picked him up. And he hit me. Just smacked me. I think he was testing me, waiting to see how I would react. So, of course, I told him that was not nice, and put him down, and told him you do not hit your mom, etc., etc. But the point is, he has done this hitting thing a couple of times lately, is this a typical 3-year old thing, or is it because he is not able to talk to me and tell me what he wants? I almost think it is normal and he is just testing the waters like any 3-year old, but then I think, how far do I go in punishing him? How much does he get it? I think he gets it a lot, and knows what is going on, but what if he doesn't? What if I am just being cruel because he doesn't understand?

Any thoughts?

I can't believe it's August already. Where has the year gone? More importantly, where has the summer gone? What happend to lazy days at the beach?

Odd Times

2006-07-29T17:58:00.000-07:00

I feel as if I have been walking around in a fog lately; especially since I have now heard of two people I worked with (my age) who recently died. One of them died of a heart attack, and the other had stomach cancer. What is it about death? Why does it seem lately that everyone is getting cancer? More and more people I meet have had one, if not two, types of cancer. My MIL has had both breast cancer and bladder cancer, and is cancer free now, but just today I went for a walk, and one of the neighbors, whose wife has cancer, just told me that's she been in the hospital and it doesn't look good for her. Doesn't anybody die of old age anymore? What are we doing to ourselves? The funny thing is that I feel people are much more conscious about how they treat their bodies (well, some people, anyway), and they are aware of what they are putting into it. Then their are the overweight and unfit who couldn't care less and live to be nearly 100. The girl I know who died of stomach cancer was a health nut: she ran every day, she ate everything organic, she was very thin, she didn't drink or smoke, and the sad part is that she had a young son. I sometimes wonder if it really matters what we do anymore, or how we treat our bodies. Will we just die the way we are supposed to die, regardless of what we do? I like to think that I take pretty good care of myself: I work out at least 3x a week, I eat mostly healthy food, but I do like to drink wine and I used to smoke. I suppose it's all genetic anyway, right? I mean, how can I find any rhyme or reason to my life is everything seems so arbitrary? How come I can't just believe in fate anymore?

Only in LA: I had a bizarre experience last night. My husband and I play softball on Friday nights, and some of our friends were housesitting for their friends, one of whom happens to be an actress who was on a top-rated sit-com that ended recently. Her family will, obviously, never have to worry about money. Our friends invited us up to swim in the pool, as the house was virtually empty of everything, and they just had to make sure everything was out by the weekend so the new owners could take occupancy (the family had moved to Malibu Colony, which is where extremely wealthy people live). When we got to the top of the hill, the house sat on it's own promontory overlooking the entire valley. The pool sat on the edge of the property with the house right behind it. The house was a two-story Craftsman, with expensive wood floors, huge rooms, just amazingly beautiful. The funny part about this was that our friends said, "they've already moved out, so take anything you want that you see. They aren't coming back for any of this stuff." Now, there were bottles of expensive liquor in the foyer, so we thought it ws just alcohol. Then they led us upstairs and said, "there are a bunch of toys, and things, just take what you want." I started looking around, and was amazed. They had left clothes in drawers, toothbrushes in the holder (not that I would want that, although I'm sure there is some sucker on EBAY who would buy it), there was an unopened pack of diapers, there were dishes and toys and vases, and all even unopened gift baskets. Then, as I walked through their master bedroom, I peeked into the closets. There was a fur coat, as well as a leather skirt, rows of expensive shoes, and purses all over the counter. I was in awe, first of all at the expensive stuff, and second of all at the way they had just left it there as if it was junk. Upstairs by myself, I tried the fur coat on. It fit perfectly. I felt like I had snuck into someone's home and was going through their things. But our friends just said, "take it." They are not coming back for it, and it's all going into a dumpster if it's not gone. I put a pile of things together: an unopened frame from Pottery Barn, two matching vases from Barney's New York, a gift basket of lotions and soaps, a pair of Fendi sunglasses, a children's footstool, some kids clothes, and a box of puzzles for Owen to use. I felt weird, but at the same time, I didn't want to see this stuff be thrown out.

More than anything, it made me feel sad that some people have so much money that they just have more stuff than they need and it doesn't even matter anymore. Why buy things if you don't need them? My friend actually told me that when they had their two kids, they got a ton of gifts sent to them from magazines like People Magazine, producers would send stuff, and they just couldn't use it all. I can understand getting things that you can't use, but why not donate it to an organization that can use it? Why do celebrities, who make a gazillion dollars, want to get free stuff? Believe me, I have been to Sundance for six years, they are the first ones in line for the free swag that they give out at Sundance. And those Oscar presenters? You don't think they do it out of the generosity of their hearts? No, this is about getting the $25,000 gift basket. The only person who did anything good with theirs was George Clooney, who auctioned his off on EBAY for a charity.

I guess I've seen both sides, and lately, because we have had to watch our spending because of the new house we are building, I have stopped shopping for useless things that I will just fill up my house with. I always ask myself twice now if I really need it before I buy it.

That's my soapbox for the day....the weather has finally cooled off, and there is a great breeze blowing through.

Attack of the Yeast Infection

2006-07-28T16:49:00.000-07:00

So, Tess, still has this thrush, and it hasn't gone away, even though I gave her the medicine for two weeks, boiled all her pacifiers, and tried not to let Owen give her anything that wasn't washed. I don't understand why it is so hard to get rid of! Today I just felt so bad about it, that I am actually considering giving up breastfeeding. I mean, where is it coming from, her or me? I have done as much research as I can, and nothing says for sure whether I am giving it to her, or she's giving it to me. They all say that it is an imbalance within the system, and I can't think of anything I am doing differently. The only thing it could possibly be with her is that I started feeding her a whole grain cereal, rather than continuing with rice cereal, and maybe she's allergic to wheat? Would that make sense?

Then, underneath her chin, she has this awful skin rash that looks so painful. I know that Owen got it as well, but not as badly as her, and it just occurred to me that maybe that rash is also a yeast infection?? Is that possible? I don't know what to do about that, since she gets bathed all the time, and I have been putting zinc on it, and now vaseline, and nothing seems to be helping. And, of course, I haven't heard back from my pediatrician, which seems par for the course.

I felt like crying today over it all, this huge wave of defeat made me want to just sit down on sob. I couldn't seem to make anything work, and on top of that, I still feel sluggish, like I don't really have any motivation. Could it be PMS? Or am I just not happy because this weather is so gross, and I haven't been able to go for walks like I usually do. That is really killing me.

I want it to be winter again, our cool, California winter where the fog drifts in and jackets are necessary. I never thought I would long for the day when I could put on a turtleneck sweater again....

More Pictures...

2006-07-24T21:27:00.000-07:00

Thought I would post some more pictures, since I haven't posted any of Tess, yet. Owen just loves Tess. He is the only one who seems to be able to make her laugh.

Not a Hot Weather Fan

2006-07-23T11:54:00.000-07:00

This has been a horrible, horrible hot summer, and I'm so done with the heat. But, they say it's not going away anytime soon. Today, there is thunderstorms and rain, but being Los Angeles, and being so hot, the rain is evaporating before it hits lower than the mountains. The worst part is that it is hot everywhere. It's such bizarre weather, and it scares me more and more that it is continuing. I feel as if we are really paying the price for being uber-consumers, wasting so much stuff and using so much energy. I have become very conscious lately of the extra things we have plugged in around the house that we are not using, the lights we leave on, the water running for no reason, and I feel as if my small changes won't matter at all unless everyone else starts making changes. We are so trained to spend time, energy, money on things that don't matter. I can't even remember the last time I went to Target and aimlessly shopped for things I didn't need. I only shop at the grocery store these days, because I would find myself buying things I didn't need. My kids have more than enough clothes, and so do we. The ironic thing is that driving home from work the other day, one of those big signs that hang over the freeway that tell you if there is a traffic jam or if a Megan's Law alert has come up, was on, and it said "do your part, conserve energy." I almost had to laugh at the waste of energy for them to keep that sign lit, during the part of the day when you can barely read it because the sun is shining on it, and realized that our city is spending tons of money and energy on keeping these signs lit up with messages like these. Come on, get real. Anyway, enough of my soap box for the day.

My kids both have runny noses, again. It's like a merry go round. As soon as they get off, they get right back on and away we go whirling into the house of sickness again. I know that Owen is in school, so that's probably part of it, but still, I wish we could be sick free for the summer.

This is What We Look Like

2006-07-21T08:08:00.000-07:00

Finally, a picture! I'm starting with this one (even though Owen is only 2 years old in it) because I love this picture of us. So, here we are....more to come.

Sick Again

2006-07-21T07:57:00.000-07:00

I thought we were through with colds, then Owen got a doozy...his nose was running so badly yesterday, and last night he had that horrible, congested breathing. I feel so bad for him when he's sick like this, because I know colds just have to be gotten through. There is nothing you can do to shorten them or prevent them. I suppose I got a little too cocky thinking he would be okay this summer, and not be sick, and then wham!, along came a bad one. Of course, he is in school with a whole new group of kids, so I suppose those germs are new ones to his little body.

Then there is my theory that every time I take him to my doctor's office, he picks up another cold. We went the other day for Tess' 6 month checkup and Owen's 3-year checkup. The doctor told me all of Owen's blood tests were fine, and that he seems to be doing well. He was so wriggly when they tried to measure him that they told me he was 36-1/2 inches, but I think they might be shy an inch or two. He only weighed 32 pounds, which is fine by me, I don't need a heavy kid. Then we did Tess. She weighs 14 pounds, 9 ounces (45%) and is 26 inches long (60%). I'm so glad that she is taller than she is heavier. I hope she gets a little bit of Erik's height. She had to get four shots yesterday. I've been putting them off because every time she's come for a checkup she's had a little bit of a cold, and I don't want to take any chances. But yesterday I finally figured that maybe I should start giving them to her, to prevent something. I mean, we do live in Los Angeles, where there are a lot of people who don't have shots, and are probably carrying some of these diseases. So, better to be safe than sorry. If I lived in a small town somewhere in Montana, I might have held off a little longer. But she did fine. She was sleepy, and a little fussy, but otherwise, no fever and now she is doing well. She's still on the medicine for the thrush, and I still see it in her mouth (that stuff is so persistent!), but I'm hoping it will be gone soon.

I'm so tired lately, I don't know if it's because Tess has begun getting up to feed in the night again, but I drag during the day. I also haven't been able to go walking or work out like I used to, which makes me feel so achy, and unhealthy. I wish this heat would go away! I am so done with summer and the heat, but they say it's supposed to continue for another two months at least! Tonight we play softball, at least, so I'll get a little exercise. Have a great weekend, everyone.

Monday Already...

2006-07-17T20:55:00.000-07:00

We had such a good family weekend together, that I am always so amazed that Monday comes so fast. I remember when I used to live for my job (obviously, before I had a kids and a husband), and Monday couldn't come fast enough. I was so enamored with my career, and my world that I loved being at work. The weekends just gave me too much time. Now, I cherish every minute I have, and even though there are days during the week when I know I am home with the kids, it's not the same as the weekend. During the week, I'm always rushing to get Erik out the door for work, and then getting the kids breakfast before we rush off to therapy or school. The weekends somehow seem slower, lazier. I know that there isn't a timeline I have to adhere to.

We went to the J. Paul Getty Museum this past weekend, with other families from our support group. One of the moms works at the Getty, so she did a Family and Friends day. What a great day, and what an amazing place to spend a Saturday (especially since it's been so hot everywhere in LA). At the museum, which sits on a bluff overlooking Malibu, and was J. Paul Getty's personal residence, the weather was so pleasant. We all met about 10:30/11 a.m., then toured the museum and had lunch. We were told we could stay all afternoon if we wanted, and considering the weather, we almost did. Owen was having so much fun, walking along the corridors, and looking at the waterfalls and wading pools, saying "water, swimming in the water." For a moment, I thought of how far we had all come: us with Owen and how we dealt with it, Nancy with her amazing little boy Henry, Miriam and her boy, Nicholas, who is so charming and finally walking a little bit!, Jen and Joel with their little girl, Ava, who is the prettiest little girl I've ever seen, and Stacy with her family, including her beautiful little girl Elsie, who has William's Syndrome. I just think how all our lives have collided because of what we probably all thought was originally a bad thing, a horrible diagnosis. And there we were, with our kids who were just being kids, running around and exploring, and we had all survived, we were all okay. I thought of how we were all out there, in the public, showing off our kids because they are just as wonderful as any other kids, just as special, and just as free from the constraints of society's labels. It was truly an amazing moment, when I looked at my son running across marble floors with my husband gleefully chasing him, neither paying attention to what anybody else 'thought' of them.

Nancy and I had a chance to sit and chat (she was the one who invited us). She had missed most of the Mom's Meetings because she had been working on one of the exhibits at the Getty. We talked about how we were advocates for our kids, just by the fact that we were there in their lives, present, and giving them the opportunity to be a part of society. We weren't afraid to bring them anywhere, to have experiences just like everybody else. I'm sure there were people who looked twice at our kids, but so what? I had more people look at Owen and laugh, because his laugh was so infectious. We are giving them a chance to be part of society, to learn at an early age to enjoy what is there, regardless of what people think. I'm not sure if any of this makes sense...

On another note, Owen went back to school today, and he cried for about a minute, and then the minute he turned away from me, he stopped crying. He didn't cry the rest of the class. What a champ he is. I watched him covertly from the car as he walked to his classroom, just following along. What a cute little boy he is. I already miss him being a baby, though. Then when I picked him up (Erik decided to come by too), he was so happy to see us, and clung to Erik. The teacher said he did great, and that he is getting better. I think he's the youngest in his class, so the fact that he's doing this well at all is great. I think their approach is certainly good. He needs a firm approach.

When we got home, his cousins were still at our house, and he just began playing with them, twirling around and showing them a little dance. I couldn't believe how social he was. I think school is really teaching him how to interact. Before, he would have sat down in a corner and watched Nikolas and Emily play. Now, he just joins right in, and wants to play with them.

As for Tess, she is such a sweet little girl. She has thrush in her mouth (it's like a yeast infection in her mouth, gross...) so she has to have this awful medicine four times a day. It's so terrible, and she cries, but when it's done, she's as happy as a lark. I know that she got it from breastfeeding, and a part of me wonders if I should give up breastfeeeding her, since she has begun to favor one side. So the other side is severely neglected and gets really full during the night. I don't' know what to do about it, and I don't want to stop breastfeeding her, because I really like it. I was hoping to go until she gets to be a year old, but she's so easily distracted! Plus, she's hungry, so now she's getting food three times a day. She gets upset if she can't have food at certain times, and tonight, I noticed that she watched me eat every bite. Then she tried to grab my plate. I forget when we are supposed to introduce solid food, but she's not even six months?! It can't happen yet, right?

I love my kids, they are so amazing...will I lose all my readers because I keep talking about how great my kids are?? And one day, I'm going to learn how to post pictures. Here's something to ponder: I'm a pretty smart person, but for some reason, I can't figure out how to post pictures on my blog...

Sigh of Relief

2006-07-14T10:06:00.000-07:00

Finally, finally, I got a call from Owen's pediatrician to say that the blood tests all came back fine, there is no issues. I can actually breathe a sigh of relief (until next year...). It's amazing that all those bruises he got on his leg, he must have had ten on his shins and thighs, are all almost gone, and maybe he has one or two. I suppose he is just being a three-year-old. He has gotten a lot more daring in his escapades, so he does fall a lot more now. He still is a very cautious kid, but for him, he's been doing more.

So school started on Wednesday. I stayed for the first half hour, and then I told him I was leaving and he started to cry. The teachers said, "bye, mom, he'll be okay," and I left with Tess. I felt so bad, but then I figured if I didn't leave, he would cry again the next day, which he did, of course. But they said he was a little better the next day. It was worse leaving him the second day because I could only drop him off at the gate with the other kids, and hand him to the teachers. I told him I was leaving and he started wailing. I felt so bad. Again, they said, "bye, mom, we'll take care of him," but I could hear him crying across the playground. I just thought, how awful that we have to leave our kids in the hands of strangers, albeit capable strangers, but nonetheless, strangers. And strange kids, too. I called the classroom later, and the teacher's assistant told me he was playing, and was only crying on and off. Apparently when Erik picked him up he was quite happy, so I suppose he'll get used to it. It makes me sad that he is already three years old, and already off to school. I know that he has to grow up, but I do sometimes wish he could stay just like this: a little tiny man, with soft baby skin and rounded knees, with pudgy hands and a little sweet mouth he puckers up to kiss me with. I just love to watch him as he sleeps at night, arms tucked under his head and his legs thrown across the bed. He already is growing out of his little toddler bed, aas I see how his legs stretch further and further down the bed. Oh, my little boy, soon to be a man...

School Starts Tomorrow

2006-07-11T10:16:00.000-07:00

We visited Owen's new preschool yesterday, and I'm glad we chose to bring Owen, even though it was a Parent/Teacher information meeting. I felt that he really needed to see the classroom, and meet the teachers, regardless of adults being there. If there is one thing I have learned about kids with Down Syndrome, it's that they really need familiarity. So, I couldn't just drop him off on Wednesday and say goodbye without first introducing him to the situation. It went well. In fact, a few other moms brought their kids and Owen played quite well with one of them. Then, he explored the room, saying hi to the adults and dancing a little bit (he does this little galloping walk, which he learned from, of course, "The Wiggles"). I feel much better about the whole school scenario, and in fact, I think Owen will do really well there. The teachers are great. I can't say enough about them. They really, genuinely seem to have fun with their kids, and as Owen's teacher said, "I haven't lost one of them yet." I am a little bit excited for him to start now, I think it will make all the difference in his learning, by broadening his world. He was so talkative in speech yesterday, too, which seems to me like a big difference from even last week. He actually said a few sentences, and was mimicking words nicely. Then, he chewed gum for about 15 minutes, on his own.

Besides, it will be nice to have some quality time with Tess. I feel like so often I am ignoring her while I pay attention to Owen, and I didn't want to be that parent.

Yesterday, we had a surprise visit from a woman down the street who has two kids (and is married to a famous actor). She stopped in to say hello and ask to see the baby. Now, we haven't seen them for at least six months, and they only moved in a year ago. I think they own a place in New York. But, it was nice that she took the time to stop in and say hello. Of course, our house is on the market, so if we do sell, there goes that friendly relationship. Actually, I've taken a little bit of Erik's attitude: I will only work so hard on a relationship, and then I won't. We had invited them for a playdate months ago, and they cancelled, and we never set up one again. So, I was a little surprised that she stopped. But I was glad, too. It's amazing what happens when you stop trying so hard...

Better Today

2006-07-08T12:48:00.000-07:00

I went to see my doctor yesterday, and lo and behold, he found two cysts on my ovaries. He said it's not a bad thing, it just means my body is trying to return to normal and ovulate. He said that's probably why I'm feeling a dull pain intermittently, and to check back with him in a month. Then they will check to see if they have gone away, which he thinks they will, or if they've gotten bigger and it gets uncomfortable, then he will look at removing them. So, I feel much more relieved about me. Now, on to worrying about Owen's blood tests again...

It's been so hot here in LA and I can't stand it. I love the weather in this city, but not when it's unbearably hot. Then I have to sit inside all day with the kids, because it's too hot to take them outside, and I don't want them getting too much sun.

We played softball last night, since our league has started again. It's nice that Erik and I have this one night a week to go out and do something together. It's a team with 7 guys and 3 girls. I like it. We've been playing this league for about 8 years now. It was so nice to be able to go out after the game (we won) and have a beer...cold beer on a summer night, there is nothing better.

Heavy Thoughts

2006-07-06T22:25:00.000-07:00

Oh my God, I don’t know if I’m even good enough to be a parent…I went to check on the kids, and thank God I did. I looked at Tess and she had one of her blankets wrapped up over her mouth and nose, with the binky in her mouth. I was so scared that she was inhaling carbon monoxide, and given more time, she might have suffocated and died. I am so scared right now; I feel as if God was watching over her, because it’s obvious I can’t. I don’t know why I left her with the blanket up against her mouth, except that I didn’t want to disturb her since she had just fallen into sleep. Then I went downstairs to work out. I should have checked on her sooner…what was I thinking??

I am in such bad shape right now. I still have this dull pain just below my abdomen that comes intermittently, sometimes three or four times an hour, sometimes every four hours. I don’t know what it is, but it can’t be good. I keep trying to isolate what it could be, but I can’t.

And then, I called the pediatrician's office to ask about Owen’s blood tests, which they said the results would be there by Monday (today is Thursday) and they said they hadn’t received the results yet. I find that fishy. I think that because my doctor is on vacation, that something must be wrong and the other doesn’t want to be the one to tell me. I am so nervous that he has leukemia in his blood cells. I don’t know what else to think. Why wouldn’t they have gotten the results by now? It’s been three working days. I know there was a holiday, but still, they should be there by now. Or, if they are not there yet, then something is wrong with the blood and they are rechecking it to be sure. I suppose there is nothing I can do at this point except worry about it, which I shouldn’t do, but I will. I just wish I could stop feeling so ill-at-ease about everything. I wish I was more like Erik, his philosophy is “don’t worry about it until there is something concrete to worry about.” I just can’t help myself.

I am going to have some red wine. I can’t take this anymore. After two glasses of red wine, my mind is going haywire...here are my random thoughts:

So what if I just stopped trying to scientifically think things through? What if, for the next 7 days, I just decide to believe that God is handling my life, and that whatever happens is meant to be. Could I do that? Would I be happier? There was a time when I was younger, having spent years in Catholic school and church on Sundays, that I went about life quite happily because I believed that whatever happened was God’s will, and that everything would be alright. I don’t really know what happened to change that. I don’t know why I became such an unbeliever. It’s as if I started putting more faith in the media and the scientific data and the hearsay of others. I know that some people scoff at religion, but it gave me such a base of faith that I was happy. I knew that things were happening the way they were not because of my fallibility, but because of the way God chose for them to happen. I wonder when I stopped being such a fatalist and started questioning things so much.

One thing I do know is that nobody ever cautioned me that having kids would be such a heartache. That every breath, every cold, every fall, would cause me to rethink what I had gotten myself into. How naïve I was when there was nobody but myself to worry about! I could handle just me. But throw kids into the mix, these tiny, beautiful creatures who depend on you for everything, and as they grow, the worries get bigger and fiercer. I am afraid to drive to work some days, in case I get in a huge accident and don’t survive. Who will make sure that Tess gets breastmilk until she’s one year old? Who will make sure Owen has his blended fruit in the morning? Who will they call Mom? I am afraid every day, now that I have kids. And I wonder sometimes, would it have been better if I was younger when I had my kids? Would I have been less protective, less afraid because I know what the world is all about now? I have friends who had their kids when they were younger, and they see them as partly an annoyance, because they still have things to do, they still have dreams unfulfilled. I feel as if my kids fulfilled my dreams. They are the epitome of what my life is about. They are my essence, my reason for being. They complete me.

The Week of Hell

2006-07-03T18:07:00.000-07:00

Thank God last week is over, after I had to take Owen to all the nasty appointments. First, there was the ENT, and I had to hold Owen in a stranglehold so he could pull wax out of his ear, then there was the doctor's office so he could get the Hepatitis A shot (which, of course, gave him a fever for 24 hours and he was miserable), then we had to take him to get his blood drawn for his yearly tests, including the one I am mos tafraid to know about: leukemia. But, thankfully, my doctor found a clinic in Encino which only does babies and kids. They were great. I was so nervous about taking Owen, so I made Erik come with me, and they had the needle in and the blood drawn in less than a minute. I couldn't believe it. Here I was waiting for this awful, painful, long drawn-out procedure (because nobody in the past has been able to get a good blood draw from Owen), and these two guys just tied up his arm, got the needle in and got the blood out. I was so relieved. And the worst of it is over. Owen doesn't really have to go for anymore awful stuff, for now, at least.

I've been having a lot of anxiety again lately, and I can't seem to shake it. I feel as if I am going to die. It's not anybody else I'm worried about (last time when I had anxiety attacks I thought everyone else was going to die). This time, it's me. I had a dream the other night that I had breast cancer, and it was so real, that I woke up sweating. Then I think I started to get the idea that I have cancer (my name is Suzanne and I am a hypochondriac), and now, every little twinge again makes me think something is wrong. I don't know whether it's because I look at my two beautiful kids and I want to be with them all the time, and I want to be able to be there forever for them. I still keep feeling as if every moment I have with them is so bittersweet, as if there is going to be pain because I have such amazing kids. I feel as if I cannot possibly be this lucky without the other shoe dropping.

I know that logically, I can't just develop cancer overnight. But perhaps it is my way of anticipating that something bad is going to happen, so that when it's not as bad as I thought, I can feel relieved. It's really crazy thinking, I know, but I can't help it. I went through this anxiety-ridden time when I was weaning Owen, and now it seems to be happening again, only I am still completely breastfeeding Tess. I don't understand. But, I suppose I must just learn to put these fears away.

Happy 4th of July!

Lesson #1001: Always Get a Copy

2006-06-28T16:41:00.000-07:00

I took Owen to the Ear, Nose and Throat (ENT) doctor yesterday, for a checkup. Now, I am the champion parent on making sure that Owen has his checkups and he has seen every doctor that is recommended. The last time we saw the ENT was two years ago, and the reason was that after he referred us for a hearing test, the audiologists said his hearing was just fine. We thought that was that. Of course, we never got a copy of the report and neither did our pediatrician. The only reason I actually thought about it again was that the LAUSD asked for a copy of the test, or else they would do a hearing check. I figured we didn't need to put Owen through that stress since he had already had his hearing checked pretty extensively the first time around. When I called the ENT's office for a copy of the report, they told me his file was stored, and it would take a few days to get it. In the meantime, I decided to make an appointment with the doctor (the funny part is, they asked me why I needed to see the doctor again, and I said, "because maybe I should have him checked again?" Duh!).

So we went yesterday, and the doctor says to me, "why didn't you follow up from the last visit?"
"Excuse me?" I said.
"Well, it says here that you should have brought him in for a follow up 6 months after he had his hearing tested."
Now, I don't know about you folks out there, but last time I checked, I wasn't a mind reader, nor was I able to figure out that I needed to bring him back, since I had never gotten a copy of the report. And neither had my pediatrician. I didn't really think about it at the moment, because I was trying to keep Owen still while he looked in his ears, and took wax out. Then he tells me that he thinks Owen has water in his ears, and that possibly he may need tubes. Now, this is all news to me. I guess he was looking at the audiology report from two years ago, and telling me that Owen's ears were not responding as they should have. Now, call me crazy, but shouldn't the doctor's office have alerted me to this, and let me know that I should have taken some kind of action? Instead, his chart was filed.

So at speech today, I told his ST about this. She was concerned, especially since if he has any amount of hearing loss, it could affect his learning ability, which is crucial at this age. Needless to say, I feel like an idiot for not following up, even though I know that this isn't my fault.

I'm so disheartened by the fact that I let something like this slip. I remember the audiologist telling us that his hearing was fine, so we thought we were done, we could rest easy. Now, I'm afraid we have wasted two years that might have been key for him. I'm not so concerned about putting tubes in his ears, either, I would rather do that if it would help him. But, I just hope we haven't missed the boat.

And, of course, as usual, they are booked until the first week of August for an appointment. It's not like time really matters, does it??

Owen starts preschool in two weeks, and I am so dreading it. I feel as if he is going to feel like he's being punished because he is going to be sent away for three hours every day. Maybe I'm the one who feels like I am being punished because I have to send him to school for three hours. I still feel as if 3 is too young, but perhaps I am just being one of those moms who can't let my child grow up.

Owen is Three

2006-06-26T21:07:00.000-07:00

Today is Owen's actual birthday, and I did look up at the clock at about 7:15 p.m. tonight and realized that three years ago I was in surgery, having Owen. I am amazed that three years have gone by; three wonderful, amazing, fun, surprising years. Years I wouldn't trade for anything. I was thinking today as I was driving Owen home from speech about women who terminate their DS pregnancies, and what would my life be like if I had somehow chosen that path. I also was thinking about how when we first found out Owen had Down Syndrome, my first thought was that maybe it would be better if he had died, then his life wouldn't be ruined. But that was when he was only a few days old, and of course, it was before I knew what I know now.

Now, I realize that I would have missed out on so many incredible moments, and such a tremendous amount of growth within myself. I could not, would not, want to imagine my life without my little boy. And I just can't imagine him as anything but himself. He is so charming, and funny, and sweet, and even when he gets upset, I just feel such an outpouring of love for him. In some ways, I think that my feelings for him run deeper than they ever have for another human being, including my husband. I mean, I love my husband, but there is something about loving a child who has Down Syndrome. Even Tess (who is so sweet and wonderful) I know that she is going to be okay, and won't need me as much as I feel Owen does sometimes. There really is a vulnerability to Owen, something that I don't see in other kids. He is so receptive to what is going on in the universe, that I think he internalizes a lot more than we know.

I just feel as if Owen is part angel, and that he was sent here to teach so many of us a lesson we never anticipated. But, having said that, I hope God sees that it will take us a very, very, very long time to learn these lessons, so He better not be thinking that Owen needs to return any time soon.

Testing, Testing, 1...2...3

2006-06-24T18:26:00.000-07:00

I took Owen to the Regional Center on Thursday for his three year evaluation. Aparently, we get a new counselor, someone who will track him while the school system takes care of most of his therapy needs. They will come back into the picture when he turns 18. I wasn’t sure what to expect, but it wasn’t like I thought it was going to be. I met the woman who would be evaluating him, and she was very nice, and sweet. Owen immediately took to her. We went into a room where she told Owen she was going to have him play with some toys. I sat next to him, but she cautioned me that I wasn’t allowed to help. Then she asked him to do several tasks, like puzzles, towers of blocks, pick out pictures, etc. After it was over, which it didn’t take very long, she asked me some questions about his health, and his life. I saw her tallying up numbers on a “test” sheet. Then she said, “I have to say, he’s doing really great. He scored great.” Then she told me that he had an overall score of 70, which is below average, but not mentally retarded (or MR, as she referred to it). Then she said that his receptive language skills were 77, which put him in the normal range, and his performance was 70. I asked her what that scale meant. She told me that typical kids usually fall between 71 and 100. I guess 70 is the line, because she said that mentally retarded starts at a score of 69 and below. Now, I’m sure why Owen hit the line is neither here nor there, but I asked her to repeat everything because I was deliciously happy that she was telling me he was on the low end of typical, and not MR. She told me that if he continues to excel the way he has, given the services he needs, he could do well. I was so happy to hear that. I mean, really, nobody has ever told me what his cognitive levels are, and what to expect. We have always been told that they can’t really tell you what his cognitive levels are, until he’s older. And, I suppose, that's true. After all, these tests are imperfect. And Owen didn’t even do as well as I thought he would. There were clearly things he knew that he wasn’t pointing out, pictures he knew very well. But, I think he just got bored, and tired of being asked to do things.

So here’s what it comes down to: my child is just going to be on the lowest end of average, I hope. But he won’t be paralyzed by an inability to think. That, to me, is what is important. I don't know why it is so important, except that I realized the other day that it seems as if parents are always fixated on how "smart" their kids are. You don't hear them say, "wow, look how energetic he is!" or "wow, look how talkative she is" it's always, "look how smart my child is." Why are we so concerned about how smart our children are? And really, doesn't it just lead to heartache for those parents who push their kids so much because they are so "smart"?

So I brought Owen home, where my MIL was watching Tess. I explained the scores and what the evaluator had said, and after all that, she looked at Owen and said, “So you won’t be so dumb after all, huh?” It sounded so harsh, and so wrong, but what could I say? She thinks that kids his age don’t know what she says. But they do, they are sponges and absorb everything.

Owen turns three on Monday, and Sunday is his birthday party. Everything has been bought, and it is all ready to go. I even found a place to do a Wiggles cake…I can’t wait to see his face when we bring it out…

Nervous Nellie

2006-06-19T11:13:00.000-07:00

So Owen was sick again the other night; this time, diarrhea all day, and then he totally threw up twice in the middle of the night. And, of course, we were showing our house on Sunday, so we had to spend all morning changing sheets and scrubbing the carpet in our bedroom. I feel so bad for him when he gets sick. I know what it's like to be sick, and it's horrible, I can't imagine what it's like for someone who doesn't understand what is happening.

On Sunday, Father's Day, we ended up going out to Malibu for Father's Day, but we missed brunch and didn't get out there until the afternoon. I could tell Owen was still feeling a little sick, but otherwise, he was fine. I have been so fixated on every little bruise on his body lately, wondering if something is wrong. I have noticed more and more how purple his eyes are, especially the bags under his eyes. I look at Tess and she is the picture of health, and I wonder why, if Owen has Down Syndrome, why couldn't God just leave it at that? Why do they have to be sicker, lower immune system, etc?

I have been feeling sick to my stomach all day long, every day, for the past two days (no, definitely not pregnant!), because I am so worried that Owen is sicker than we know. I have called my doctor's office to order the leukemia blood test, and the thyroid test, if only to put myself at ease (or really throw myself into a panic!). I can't help it. I feel as if Owen is so much more fragile than any other baby. When Tess gets sick, and she's already had four colds in her short five months life, I don't worry as much because she just seems stronger. I feel worse when Owen gets sick because it seems to take such a toll on his little body.

I don't want to live my days like this, but loving Owen so much scares me. I'm so scared that he will be taken away from, that he will get really sick and...I can't even write it, because I don't want to jinx myself. The only thing I can think that might be happening to me right now is that maybe I am going to get my period soon (which I haven't had yet since I was pregnant), because last time, when I was close I got really paranoid about everything. I hope this is just a phase, because I know it's not good for me to be so anxious all the time.

In the meantime, just as we get our house ready for sale, the market slows down, way down. Even though people love our house, we have not gotten an offer. But there was no way we could have sold is last summer because we didn't have anywhere else to go. We may end up staying here. I suppose things will happen the way they happen.

Clingy Boy

2006-06-17T09:28:00.000-07:00

Yesterday, when I started to get ready for work, Owen would not stop hugging my leg, making it virtually impossible for me to move anywhere. It was just like any other day that I go to work, but for some reason he did not want me to leave. If I tried to go to another room, he would start to cry, as if I had left already. I took him downstairs with me while I checked e-mail, and his lower lip started to tremble when I tried to explain to him that I have to go to work so I can pay the bills. Then he hugged me so hard, it was like he wanted to climb inside of me. I so didn't want to leave. It broke my heart to finally have to go and leave him screaming and crying for me. He never used to do this (well, actually, he did a couple of times when he was about 1-1/2 years old. I didn't know that this would happen again. I thought he was growing up, but maybe he's feeling our stress, and maybe, just maybe, the whole "new baby in my house" is finally kicking in. I mean, I can't help that I have to feel her constantly when I'm home, but I'm sure he feels slighted, and feels like she has taken his place. Plus, he's begun to do some things that make me so mad, like throwing his sippy cup, and throwing food, refusing to eat, not going to the toilet, and other things. I know that part of it is his just being a two-almost-three-year old, but I don't know how to fix it. And, I just don't know what is appropriate discipline for a child who you think knows what they are doing, but cognitively, do they understand discipline? A couple of times I have slapped his hand, and he thought it was funny, and then slapped his own hand. I don't know what to do with that. Then I tried a time out in the corner, and he thought that was so fun, trying to get out of the corner, and knowing that he had my attention. But, I don't want him to think he can continue to act like a baby when he needs to grow up and get ready for school. I can't have him throwing things at school just because he doesn't like them.

Lately, I've really become fixated on getting Owen to act more like an kid and less like a baby. I've been trying to have him eat with a spoon and fork, but of course, it's still very difficult for him. Partly that may be because we haven't insisted that he use a fork and spoon until recently. With the spoon, I usually have to get his vitamins in him and can't afford to have him spill it all over, and other than that, I was just happy he was self-feeding by picking up his food. But I'm sure when he's six it won't be so cute that he picks all his food up with his fingers. I finally threw out all his bottles, and now he is just using sippy cups. I thought that would be a much bigger hurdle, but it hasn't been. We had been transitioning him, albeit a little slower than most kids, but now they are gone, and it is only the pacifier he uses (although that is strictly at night when he goes so sleep, so I don't see that as a big deal. Besides, he has sensory issues so he needs to chew or suck on something). I hav also been trying to get him to pull down his pants, or pull up his underwear. I recently saw a couple of two-year-old girls, Owen's age, who were changing outfits over and over. I was so amazed that they could take off all their clothes, and put on new outfits. And I know that girls just like to do that, but I feel as if Owen is so far behind because we have been doing everything for him. How do you know when to stop and make him do it himself?? It just seems like when we have to go somewhere, if I don't do his outfit, he will stay in his pjs all day. Am I that parent that I never said I would be? Am I one of those parents who can't bear to let their child grow up so they do everything for them?? What is the cutoff age?? God, it gets so hard as they get older. Why can't they just stay Tess' age: soft, cuddly, sleepy, hungry, and so easy...

I finally gave Tess cereal, although if I had my druthers I would just continue to breastfeed her for a year without any changes. But I suppose babies must turn into children, too, and she needs to learn to eat food. She tolerated pretty well, but I've only given it to her twice. I feel as if it's so much easier just to breastfeed her, and now with food, suddenly you have start working it around breakfast, lunch and dinner. I just finally got Owen on a schedule of eating, and now I have to add her?! Ah, the joys of motherhood (which, as you all know, I am not complaining...)

Trying to Keep It Together

2006-06-14T12:34:00.000-07:00

Okay, so we got through our IEP, and of course, I thought that it would be okay not to go into the office on Friday afternoon (usually I work on Friday), since it was already too late to make that trek and I figured I could make up the hours the following week. Isn't it funny how you just get your personal life settled and your work life blows up in your face?

I have not been able to check my e-mail for work from home, and my boss knows that (or so I thought), and when I had asked for a blackberry so that I was able to get important e-mails he said they didn't have an extra account for me at this time. Okay, fine, I work my 20 hours and am available by cell phone. Unfortunately, there was a writer who asked about using a particular quote from my boss in a story, and for some reason, my mind was telling me it wasn't that urgent. I did communicate the quote to my boss and he sent me an e-mail with a new quote, but it came to my work e-mail after I had left on Wednesday, and since I wasn't back in the office until Tuesday of the following week, I completely missed getting the information. Sure enough, on Tuesday, his quote was staring me in the face, in print, centerspread. I knew I was screwed. I sent him an e-mail alerting him about it, and he sent me an e-mail that took me to task for not doing my job. I know I screwed up, but really, how much can I keep juggling in my mind and on my plate without something falling through the cracks?! I know, I know, I get paid to do that job, so that should be my priority, but lately, Owen's IEP has been my priority because it determines the next part of his life!

I guess that's no excuse, but you can't tell me that anybody at that company doesn't put their family first at some point or another. My God, I haven't even taken any vacation, and I came back early from maternity leave to work on things that needed to be done!

So now, I have been really pretty depressed being at work, because I know that this mistake will haunt me for the rest of my career there. The plain ugly truth is that I am a woman, working in a man's world, and we are not easily forgiven (by the very virtue that we don't have balls). Maybe I'm just not cut out to be doing what I am doing anymore. Maybe I have been slipping because nobody cares about PR. Maybe my son's education happened to be much more important to me that week than making sure a quote was confirmed or replaced. Maybe I'm in the wrong business, after all.

We Have Been IEP'd

2006-06-10T21:07:00.000-07:00

So, relief has set in. Our IEP is over, and we are all happy with the results. Here's how it went: we got there (bearing food, as everyone told us this was a good idea), and said hello. Our two therapists, Jana (speech) and Lisa (OT) were already there. Everyone seemed so silent, not really talking or saying anything. It's so odd, how these aren't like business meetings where people try to get acquainted before they actually get down to business. This was so serious, as if we were all about to take a test, and couldn't talk about it beforehand. So, I pulled out a tape recorder and said I would like to tape the meeting. They all looked at each other and said, "you can't do that without 24-hour notice, and we didn't get any notice." I told them that I could share the tape, and they said they just couldn't allow it, because they should have been given notice in order to tape it themselves. Immediately, I bristled. I wasn't sure why we couldn't just tape it (and of course, I had wanted to tell them we would tape it, but Erik said no, that it would be far easier to receive forgiveness than permission....well, this time, his theory didn't work). So, I backed down. Then, they handed us a book that explained our parental rights, and said we should have already gotten a copy of it. We had not. I even showed them the book we had with all our information on Owen, and I pulled out every book I had, none of which was that book of parental rights. So now, I was feeling backed into a corner. I couldn't tape our meeting, but they could throw a book of my rights at me and not give me time to read it? How fair is that? So I said, "Fine, but I am not signing anything until I have a chance to read my rights." Erik leaned over and whispered in my ear, "you've got to calm down, they haven't done anything yet." He was right. I was getting angry before anything had been decided. So, we proceeded. We went over all Owen's reports, and then they told us that, given everything they had observed and read, they felt he was at an 18-month level. 18 months! That's only a 1-year old! But, as Erik explained to me later, he has to be at a much lower level, otherwise we won't get services. So, we began the part of deciding what the LAUSD could do for Owen. They asked what school we liked and we told them abou the one we had chose, a collaborative pre-school, with 15 typical kids, and 5 special needs. They all nodded and one of them said, "that is the most sought-after placement. Those teachers are great." So they agreed that Owen could attend that class, which was a relief for me, because I really like the teachers and their classroom and their philosophy. School, check.

The next thing was services.What would we get beyond school? The OT said that she was on the fence, but that she felt he could benefit from one hour a month of OT. We weren't expecting that, because everyone said we wouldn't get any OT. The OT would come into the classroom and help Owen navigate some tasks, like scissors, beading, etc. We felt that was fine. Of course, we turned to our OT and asked her if she agreed, which she did (we had been told that they can't recommend unless we ask them what they think). Then, the PT said she didn't recommend any PT because Owen was doing excellent. She said that she was very surprised at his gross motor skills, the ability to navigate stairs, his hips and gait were ermerging normally, and that he had full control of walking. Even though he is not running, she said he is on the verge of it, and that jumping would be emerging sooner rather than later as well. She was amazed at his gross motor coordination, and thought that he would be able to navigate the school just fine. We agreed. We hadn't had a PT for at least a year anyway, and Erik and I practiced stairs and jumping and running with Owen a lot.

Then came speech. The speech therapist recommended that Owen continue with 2 hours per week (what a surprise!), which is what he has been receiving, except that one hour would be with a ST at school, to teach him to communicate with his peers, and he could still maintain his one hour a week with his current therapist. We all looked at each other. We had already gotten what we wanted, without a fight! We were fully prepared to come and fight for two hours of speech, and if we didn't get that, we were going to ask for a Stay-Put, which means they have to continue your services as they stand until the issue is resolved. But here we were, and what we wanted was given to us. Again, we deferred to our ST to make sure that what they had given us had no hidden cost. She agreed that what they were giving us was fine. So there we were. They asked if we had any questions, and we didn't really, except, when do we start school? How do we go about getting him enrolled, etc. We didn't sign the IEP, just because we wanted to take our time and look it over, make sure it was what we had agreed upon and that there were no errors. I glanced at it, and saw that it had a check for bus service, and that it would pick him up at our Studio City house. I asked Erik, why did we need the bus service? He told me, "shhh, just take it, we can always say no." And here I thought people had to fight for bus service, too.

So, we took our therapists out to lunch, since they had given up their day off to come to our IEP, and it had taken three hours. Both of them said that this was one of the best IEPs they had been to in a long time, and that they felt we had been given a good IEP team. Our OT said that, "unfortunately, a lot of times I see that when parents don't appear involved, or organized, or maybe have issues with communication, they often don't get a lot of services." She thought that maybe this team knew we were on top of things and therefore tried to give us what we wanted. I think that probably has a lot to do with it. So, remember, if you have an IEP coming up, dress nicely, be prepared, bring all the paperwork, and know your acronyms (IEP, NPA, IPP, ESY...)!

I am so relieved that it is over. The bummer is that the next time we call an IEP (and, if we feel that this IEP is not working for us, we can call up to four IEPs per year), it will be a different team. And we were just getting in good with this one...

Strees, Stress, Stress

2006-06-08T22:22:00.000-07:00

I feel like such an awful parent. Two nights ago, I came home from a work event, and the pillows from the couch were standing in the kitchen, reeking of urine. So, even though it was late, I scrubbed them down, all the while pissed off that Erik hadn’t been vigilant enough to get Owen to the toilet. The next morning, I kept asking Owen if he had to go potty, and he kept saying no. Then, he stood there, and I could see him pushing out the pee as he peed in his underwear all over the floor. Then he proceeded to slide around in it. It took me a few seconds to register (which is why he had time to play in it), before I started yelling, “Damn it, why can’t you just go to the bathroom?” And then it got worse. Then I started saying, “No wonder you can’t learn anything, because you have Down Syndrome,” and other awful, awful things like that. To a three year old. Yes, I said that to a three year old, who of course has no idea what I was actually saying, ,but knew enough that I was mad as hell that he would not look at me and ran to my husband, crying. He knew I was mad at him, and of course I was, but then I just felt extremely guilty for being so mean. Because of course, he doesn’t understand what I said, does he?

So all day, I felt so guilty, and mean, and just plain sad. Because I want so much for my child, and this whole IEP thing is really wearing on my nerves. I just want it to be over with. So, the fact that Owen is now deliberately peeing in his pants could be because: a.) both Erik and I are stressed and he feels that, b.) we are selling the house and keep moving all his toys into the garage so he has nothing to play with (he probably is thinking, what, I don’t live here anymore?), c.) he has a new baby sister who is not going away and is constantly on his mom’s breast eating, d.) mom then decides to go back to work, e.) and she stops letting me take naps, which she used to lay down and cuddle with me, and f.) change is constant in our house. So, any reason that he shouldn’t be crying out for attention??

So then I get all the reports from the LAUSD, and as I am reading them, I am trying not to cry. It’s one thing to know that your child has a disability, it’s quite another thing to see it on paper: “the child is mentally retarded and therefore qualifies for school assistance.” I was so devastated by the black and white terms they used to describe my child, and how he performed. But, like my husband said, they didn’t do anything other than describe how Owen is. I just feel that for three years we have been blessed with people who truly cared about Owen and they all thought he was doing well. Now, it’s as if we have been unleashed into the real world and people are mean. You forget how mean people can be sometimes. And maybe it’s not that they are mean, but that they are just being truthful…and we all know that truth hurts.

Last night was our support group meeting, and when I walked in there were only two other moms there: one with a 5-year old with Down Syndrome and one with a 1–year old (and she’s a LAUSD teacher). They asked me how I was doing, and I just couldn’t keep the tears back. I had been trying so hard not to cry all day, and suddenly, I just had to cry. I was telling them about the reports and how hard it was to hear the bitter truth from these people. I could see one of them tearing up, and I felt so bad for not being strong, because I have always been the mom who is the most strong, the most upbeat. But I just couldn’t do it that day. After I talked to them for a while, I felt so much better, and in a way, I’m glad I got that out before some of the others got there, because it really was just something I needed to let go of so I could enjoy the night. I feel like every time we meet, it’s such a great night. I really look forward to these meetings, because I feel as if it’s like a monthly party with women I would totally want to hang out with, except that we all have a child with Down Syndrome in common. But, what amazing women! I am always struck by how much alike we all are, and yet in the same sense, how different we all are. Turns out, three of us are from Michigan, go figure.

So tomorrow is our IEP, and I must get some sleep so I am well-rested. Thank God, Tess sleeps through the night, oh, and did I mention that Owen just woke up a few minutes ago to go pee, and then went back to sleep? What a love...

He Can Chew Gum!

2006-06-05T18:08:00.000-07:00

In speech, we have been trying to teach Owen to chew gum (there apparently is a whole game plan to teaching a child how to chew gum). Both his speech therapist and OT thought it would be the perfect thing for his sensory issues, since he loves to chew crunchy things, and he will chew one of those rubber toothbrushes until it disintegrates. So, the past few weeks, we have been trying to get him to chew a piece of gum. He hated it. Every time our therapist would pull the gum out, he would run over to me and hide (and yet, this kid has no problem putting Playdoh in his mouth!). One time, we even tried to hide it among other pieces of Playdoh, but no go, he knew it was gum. So, every week, we would still put it in his mouth and make him bite down, and then have him throw the gum away.

Well, today, we got ready to do gum, and I was expecting the same battle, and crying. But, with little resistance, we got the gum in his mouth, he chewed it once, twice, three times, and then kept chewing it! Then, he switched it to the other side with his tongue (which is exactly the kind of oral muscles we are trying to activate), and kept chewing. He looked at us like he had been chewing gum forever and what was the big deal?! His speech therapist and I just kept looking at each other in awe. He chewed it for about 10 minutes, and of course, we were afraid he was going to swallow it, but finally, he pulled it out of his mouth, put it on the napkin, rolled it up and brought it over to the trashcan. I was so astonished...this kid never eats anything sweet, and of course, mint gum doesn't go over very well either. After the gum chewing, he was suddenly so calm, and rested, as if the gum chewing had given him the input he needed and he was okay. It was amazing...and I will never take gum chewing for granted again.

Now, when I was growing up, my parents didn't want us to chew gum because it inevitably ended up on the couch, or chair, or somewhere it wasn't supposed to be...it's amazing that these days, I can actually ask schools to make accommodations so that he can chew gum, if it's necessary for his concentration. His speech teacher told me that gum chewing is one of those exercises that helps him organize himself.

Then, after speech, we went and picked up his new glasses, which are bi-focals. I thought for sure that these weren't going to go over too well, but when we got home and I pulled out some puzzles to work on, and put the new glasses on, he seemed to adapt right away. He finished the puzzles in record speed, and then got up and walked around the house, with more confidence than I've ever seen him have. When my husband got home, I told him that I think Owen sees much better with these glasses, so he promptly took him outside to go down the stairs. At this point, Owen can go up and down the stairs holding on the rail, but he goes very, very slowly and with great caution. He can actually walk up smaller steps without holding onto anything. The biggest issue he has is with different types of material, such as a sidewalk that has a different material than the driveway. He can't seem to navigate curbs and steps because of an inability to judge the difference. So, we'll see how the new glasses work.

Something so cute today: Owen was taking a bath and Tess was sitting in her bouncy chair in the bathroom with us. As Owen splashed around, Tess started laughing really loud every time he threw a toy up in the air. It was so cute, I couldn't help laughing. I love watching Tess become this little person. It's such a wonderful feeling to not have to worry and wait and wonder if she will do things...

The IEP Process Has Begun

2006-06-02T12:34:00.000-07:00

So now the process has begun. We are finally transitioning Owen into the LAUSD. Here’s how things have gone so far. We had our initial evaluation with the school district, and that seemed to go well. There were several people there including an OT, PT, school psychologist, school nurse, and a speech therapist. At first, they all sat around a table and kind of stared at us. I’m not so sure these people understand kids, since that is exactly the easiest way to make a child like mine feel uncomfortable. I finally asked if I could let him play with the balls in the room (thank God they had balls there!). He warmed up pretty well, and they each evaluated him for their own specific needs. I felt like he performed pretty well. The one person who was very enthusiastic about him was the PT. She thought he was doing great. The OT and the speech therapist both saw that he had some issues, I think. The speech therapist told me that she noticed he had a slight delay in auditory cognition, but we both agreed he was more delayed in speech communication. So after two hours, we felt that things went well, and Owen did pretty well. I was pretty confident that we could find a good medium for placement for him. Until a week later, when they called to evaluate him at the transition class he goes to with typical kids. I told them that was fine if they wanted to come evaluate him, but really, I was nervous about it. Owen can do fine around us, we know how to motivate him, but when it comes to doing it on his own, it’s different. I know that in Sarah’s transition class he will observe the kids a lot, and not seem to participate much, but then he comes home and learns things. So, I was a little nervous. And, to top it all off, he had just come off the 24-hour flu. So, I went to pick up Owen from class and they were still there, observing him. When they came out, I asked them what they thought. It was the PT, OT and school psychologist who were there. The OT said to me, in a very condescending way, “Well, it’s a sweet program, but you can tell they are very accommodating to him.” Okay, that arrow hurt. Of course they are accommodating, because sometimes he needs direction. He’s also the youngest in the class, too. So then I asked the PT what she thought, and she seemed to think Owen was doing well, physically. Of course, they came late, so they didn’t see him interacting with the other kids and playing ball. Instead, they saw him sitting for story time and a puppet show. When they do the reading and puppet shows, Owen typically pays attention, but doesn’t necessarily get involved and join in shouting out words. So, the psychologist says to me that “he is clearly not where the other kids are in terms of imitating and initiating play. He doesn’t mimic at all.” Well, duh, bitch, we wouldn’t be standing here having this conversation if my child was doing what a typical 3-year old is doing! So, I told them that Owen is more of an observer and will come home and initiate play with puppets or something they played with in school. I felt so angry, and out of control, as if they had a right to judge my child based on 20 minutes of watching him. But I knew that this would happen. I knew that this is what the other parents who have gone through this were trying to warn me about.

They left, and I could only feel disappointment in myself for not having stood up to them and told them to spend more time with my child and then maybe I’ll listen to what they have to say about my child. But, instead, I just swallowed my feelings. After they left, Erik stopped by to see how things went, and lo and behold, Owen decided he wanted to ride a tricycle. He said, “Daddy, ride,” and did the sign to go with it, and Erik and I looked at each other in amazement. Of course, there was a little boy named Charlie who was riding a bike just like it and I know that’s why he wanted to ride. But I was still amazed. For two years, he had been coming to this class and had no interest in riding a tricycle, and suddenly, he didn’t want to get off of it. Too bad the LAUSD people had already left. So that was our first encounters with the LAUSD.

The following week, we went to look at schools. We looked at three schools, the first being a pre-school mixed, which means a smaller class, only ten kids, but all of them with IEPs. The program we saw had ten kids (all boys, surprisingly), and it seemed as if most of them had autism. The kids were all over the place, too. They were unruly, and the speech teacher didn’t seem to be getting through to them. The kicker was when Erik asked the teacher if she had any Down Syndrome kids in her program and she said, “Oh no, they are so low-functioning I never get them in my class.” Okay, can you twist the knife a little more? This is what made me realize that despite all our advances, and all the research that points out that our kids can learn, the assumptions that our kids are unteachable and stupid will always be there. I find that more and more as I navigate this thing called life.

The third school we saw, which was a collaborative program (includes 15 typical kids and 5 IEP kids), was what gave us hope. It was the kind of classroom we could see Owen thriving in. The two women teachers had been teaching together for 20 years or so, and were great. You could tell the kids loved them. One of the teachers is almost deaf, so in a way, we felt that she understood kids with special needs. She also said that because of her handicap, she demands that kids look her in the eye when they talk to her, otherwise, she doesn’t know what they are saying, which I think is an amazing skill to teach a child. The two teachers told us their philosophy is that they treat all kids the same. They expect all their kids to be ready for kindergarten and they don’t cut them any slack (in other words, they don’t baby them). I really liked this philosophy because I think Owen will thrive under teachers like this. Plus, they asked us if we could pick out the IEP kids, and I’m telling you, I couldn’t. I could not tell you which kids were the special needs kids, and they pride themselves on that. I hope Owen can go to this class. So next up is our meeting with the LAUSD for our IEP (so many acronyms!). We will fight for this third classroom setting we saw, and I will be so pissed if they try to tell us that Owen isn’t good enough for that program…because that’s what it’s all about, isn’t it? Is our child “good enough” for society? Enough for today. Have a good weekend everybody.

Finally Posting

2006-06-02T10:33:00.000-07:00

I feel like time has just slipped away, and it's already June! I haven't been able to write in my journal, or post online, and I think it's been getting to me. Writing has always been my way of relieving stress, and lately, I can't find two minutes in the day to do it. Plus, I got sick again this week, on top of Tess not feeling good, and Owen, go figure, is finally well. It's been one horrible sick winter/spring, and even though it's too hot already, I'm glad that summer has finally arrived. Maybe the heat will get rid of all this sickness and give us a break, finally.

So I never got a chance to post about the schools we saw. I am going to post later this afternoon.

2006-05-27T22:13:00.000-07:00

Yesterday was such a hard day; it was one of those days when I questioned whether I was capable of being a parent. We had a lot of things to do, including a trip to the doctor for Tess’ 4-month check-up, and then Owen’s rescheduled speech. When we got to the doctor’s office, we were kept waiting. As Owen played with the communal toys (which I hate, because they are such a germ fest, but what can you do?), I glanced over to a couple who had brought their young child in. He was tugging at his ear, and then I saw him throw up all over the floor, and the chair. I was so freaked out, I almost left, not wanting my kids to catch something. It was then that it occurred to me that everyone else I know goes to doctor’s offices that have “well entrances” for when your kids are not sick. So, after we finally got in to to see the doctor (stats: Tess is 24 inches long and 12 pounds, 12 ounces), we went home, quickly ate, and left for speech. I should have known something wasn’t right with Owen when I made his favorite “pizza”, (basically anything I can cobble together that is healthy, hidden in cheese, and baked in a tortilla). I had asked him to sit nicely at the doctor’s office, and he did, without a complaint, while Tess was checked out. In fact, I asked his doctor why he kept rubbing his eyes and she said it was probably allergies. She said I could give him Claritin, over the counter. I asked if that was really okay for a child this young, and she said yes. So we left for speech, and Owen fell asleep in the car on the way there (it was only 11:30 a.m….).

I didn’t really think it was a problem, since he was up at six and had gone to bed late the night before. Then his speech therapist commented that he seemed really tired. Still, I didn’t get it. When we got home, I tried to entice him with chips, and milk, but he didn’t want either. He wanted to cuddle with me while he watched The Wiggles. That was when I started to notice he was hot. I thought it was because our house was hot, since the weather had changed so quickly and it was now in the upper 90s. But, the listlessness was new. I saw his eyes water, and thought it was the allergies, so of course, I gave him the Claritin. When I read the box, it said for under age 6 consult a doctor. Well, I did, I asked my doctor. So I promptly gave him an adult’s dose.

The next half hour, he went downhill quickly. He became much more feverish, and he wanted only to sleep. I got really concerned. I took him in my room, with Tess crying because she was tired too, and told him we were going to take a nap. Almost instantly, his head hung back and he was in some sort of doze. I thought for sure I had poisoned him. I called Erik, frantic. He came home right away and said, “he’s burning up, we have to get him cooled down.” I got a temperature of 102 degrees, and I was so upset I almost started crying, but then I thought ,what’s the use? It will only make things worse. We called the doctor, who took TWO HOURS to call us back (so much for pediatricians being available. I’m blaming it on Bush and HMOs). Meanwhile, Erik called poison control and they told him the fever was not because of the Claritin (thank God, at least I hadn’t poisoned my child), but we knew now we were dealing with an unknown. We tried to give him a bath, and he didn’t want it; he cried when I tried a wet cloth; and I couldn’t get a temperature to save my life. Finally, I just sat with him and sang to him. Erik had to run to the store to get baby Tylenol because of course, Owen hadn't been that sick since he was a baby, so all our medicine was expired (note to self: always have baby Tylenol on hand, until they are in the teens!). I was so upset, and felt so inadequate as a parent (Owen is a relatively healthy kid, he’s only had one fever that we know of). I felt like I had no idea what to do, and that my son could die at any moment (anyone else feel that way?)

We finally got him calmed down, and his fever down a little, and he went to sleep. Meanwhile, Tess, the awesome baby that she is, went to sleep right away with little fuss. Erik and I ended up making dinner, having a glass of wine, and eating outside on our porch as the sun set over Universal Studios, the mountains outlining the hills, the succulent jasmine sending it’s perfume to us. For a moment, I felt like Erik and I had escaped to a restaurant, for dinner, with all this unstructured time where we actually could have a conversation. We both were a little rattled from the day’s events, but oddly enough, we were having this amazing dinner.

The next day, Owen’s fever subsided, but it kept coming back. Tonight, again, it’s in full force. I finally got him to sleep. He wouldn’t eat anything, and even though I tried to fool him that it was a pacifier (those new pacifier thermometers), he knew better. He wouldn’t suck it. He finally took it from me and threw it across the room. When I offered his regular pacifier, he took it. He’s smart, that one. Better watch out, world, Down Syndrome kids are much smarter than you give them credit for.

I’m worried, though. I keep wondering why Owen is getting sick so much lately. I keep trying to make those thoughts that maybe he has leukemia go away. They always pop up when Owen gets sick and then I start thinking these horrible thoughts that he has it and this is part of the symptoms (demons: go away please, I don’t need you feeding me horrible thoughts right now).

Erik said to me this morning, when we were talking about Owen and him being sick, “why do I love that little guy so much?” and I said, “it’s because he doesn’t complain. He does everything we ask him to do, and then when it’s unbearable, he snuggles up to us and asks us to notice. He doesn’t cry, he doesn’t scream. He just patiently waits for us to help him.” And it’s true. He doesn’t demand attention until he really needs it. And it makes my heart ache when I see how patient he is, and how accommodating. He is truly amazing.

Someone Else's Words

2006-05-24T21:42:00.000-07:00

I was sent this story by e-mail recently, and it just hit me how true it is about motherhood, and how fleeting each phase is with them. I just wanted to share it:

On Being Mom
by Anna Quindlen, Newsweek Columnist and Author

If not for the photographs, I might have a hard time believing they ever existed. The pensive infant with the swipe of dark bangs and the black button eyes of a Raggedy Andy doll. The placid baby with the yellow ringlets and the high piping voice. The sturdy toddler with the lower lip that curled into an apostrophe above her chin.

All my babies are gone now. I say this not in sorrow but in disbelief. I take great satisfaction in what I have today: three almost-adults, two taller than I am, one closing in fast. Three people who read the same books I do and have learned not to be afraid of disagreeing with me in their opinion of them, who sometimes tell vulgar jokes that make me laugh until I choke and cry, who need razor blades and shower gel and privacy, who want to keep their doors closed more than I like. Who, miraculously, go to the bathroom, zip up their jackets and move food from plate to mouth all by themselves. Like the trick soap I bought for the bathroom with a rubber ducky at its center, the baby is buried deep within each, barely discernible except through the unreliable haze of the past.

Everything in all the books I once pored over is finished for me now. Penelope Leach., T. Berry Brazelton., Dr. Spock. The ones on sibling rivalry and sleeping through the night and early-childhood education, all grown obsolete. Along with Goodnight Moon and Where the Wild Things Are, they are battered, spotted, well used. But I suspect that if you flipped the pages dust would rise like memories. What those books taught me, finally, and what the women on the playground taught me, and the well-meaning relations --what they taught me, was that they couldn't really teach me very much at all. Raising children is presented at first as a true-false test, then becomes multiple choice, until finally, far along, you realize that it is an endless essay. No one knows anything. One child responds well to positive reinforcement, another can be managed only with a stern voice and a timeout. One child is toilet trained at 3, his sibling at 2. When my first child was born, parents were told to put baby to bed on his belly so that he would not choke on his own spit-up. By the time my last arrived, babies were put down on their backs because of research on sudden infant death syndrome. To a new parent this ever-shifting certainty is terrifying, and then soothing.

Eventually you must learn to trust yourself. Eventually the research will follow. I remember 15 years ago poring over one of Dr. Brazelton's wonderful books on child development, in which he describes three different sorts of infants: average, quiet, and active. I was looking for a sub-quiet codicil for an 18-month old who did not walk. Was there something wrong with his fat little legs? Was there something wrong with his tiny little mind? Was he developmentally delayed, physically challenged? Was I insane? Last year he went to China. Next year he goes to college. He can talk just fine. He can walk, too. Every part of raising children is humbling, too. Believe me, mistakes were made. They have all been enshrined in the, "Remember-When-Mom-Did Hall of Fame." The outbursts, the temper tantrums, the bad language, mine, not theirs. The times the baby fell off the bed. The times I arrived late for preschool pickup. The nightmare sleepover. The horrible summer camp. The day when the youngest came barreling out of the classroom with a 98 on her geography test, and I responded, What did you get wrong? (She insisted I include that.) The time I ordered food at the McDonald's drive-through speaker and then drove away without picking it up from the window. (They all insisted I include that.) I did not allow them to watch the Simpsons for the first two seasons. What was I thinking?

But the biggest mistake I made is the one that most of us make while doing this. I did not live in the moment enough. This is particularly clear now that the moment is gone, captured only in photographs. There is one picture of the three of them, sitting in the grass on a quilt in the shadow of the swing set on a summer day, ages 6, 4 and 1. And I wish I could remember what we ate, and what we talked about, and how they sounded, and how they looked when they slept that night. I wish I had not been in such a hurry to get on to the next thing: dinner, bath, book, bed. I wish I had treasured the doing a little more and the getting it done a little less.
Even today I'm not sure what worked and what didn't, what was me and what was simply life. When they were very small, I suppose I thought someday they would become who they were because of what I'd done. Now I suspect they simply grew into their true selves because they demanded in a thousand ways that I back off and let them be.

The books said to be relaxed and I was often tense, matter-of-fact and I was sometimes over the top. And look how it all turned out. I wound up with the three people I like best in the world, who have done more than anyone to excavate my essential humanity. That's what the books never told me. I was bound and determined to learn from the experts. It just took me a while to figure out who the experts were....

2006-05-22T22:04:00.000-07:00

I feel out of control right now, as our lives swing into overdrive. I just feel as if life as we know it is going to change. At least Owen's life will. As of the end of June, we are cut off of the services offered by the regional center. Sitting in speech today with Owen, as he laughed so hard with Jana while she coaxed the words he knew out of him, I suddenly realized how fleeting this all is. In just about a month, we say goodbye to Jana, his speech therapist, Lisa, his occupational therapist and Patty, his child development specialist who has been with him since he was about 8 months old. It made me a little sad, knowing that we are entering the next phase of his life. I had gotten so used to our routine: on Monday he had speech and OT, Tuesday was school, Wednesday was child development and speech, Thursday was our free day and Friday was when I went to work and he spent the day with his babysitter, who he loves (he follows her around when she sweeps or vacuums, and then will run up to her and laughing, hug her). But now, our lives will change. Erik and I will look at schools on Wednesday, and determine what the best program is for him. This afternoon, I got a call from the team who evaluated him, and now they want to see him at his transition class, indepedently. I mean, I won't be there, and they will just observe. I feel like this is more of a test than I am ready for. Why are they doing that? Didn't they have enough time with him when we brought him to them? Is it because they don't believe us when we say he does well with other typical kids? Are they going to use a bad day in school against us to say he can't function around typical kids?

Of course, my husband always sees it differently (bless him!). He said, "Maybe they see how special he is, and how much potential he has, and they are going the extra mile to make sure they find the right place for him." Of course, if it wasn't the Los Angeles Unified School District, I might buy that. But I know that they are so overwhelmed with kids in their progams that they don't have time to go the 'extra mile.' But maybe I'm wrong. The only thing that makes me nervous is that Owen has been having this separation anxiety lately, and he had a really bad day when I took him to school. So I am making Erik take him, just so he does okay. I think there is a lot going on, and that is what is happening. Not only that, he knows when I am upset about something, and he takes it personally. When I was nervous about this whole evaluation thing, and about transferring to school, he internalized it. I know he did. See, Erik is the parent who is much calmer. Let's just say that when I get anxious about things, I go to Erik because he will always calm me down.

Other than that, Tess will be four months old this week! Yikes...and I have already had to pack away her size 0-3 clothes. Talk about entering a new phase...

I want another baby already just to keep the march of time from invading my life.

Getting Older

2006-05-19T22:27:00.001-07:00

Tomorrow night is my “39 Forever” birthday party, and probably the last party we will have in this house. If we sell it. Today we had open house and nobody showed up. Well, one agent who was sitting open house up the street, and one neighbor. I’m not sure if it’s the holiday weekend coming up, or that people are suddenly gun shy, especially the way the economy has turned. But like I said to Erik, I wouldn’t be upset if we didn’t sell. I kind of like having the kids share a room together. I know they are a girl and a boy, and more than likely they will each need their own space one day, but for now, I can handle the two of them so close together. Besides, every night Owen wakes up and comes to my side of the bed, and I like that.

I am sad about selling this house. There are so many wonderful memories for me, and my family. I am sad each day when I watch the sky change from the den, and the trees blow in the wind, I know I will miss my view. I know as sure as I am sitting here that I will miss the afternoons spent playing with the kids in the den, the hills sending down their afternoon breeze, I will miss the mornings writing in the dining room, watching the sun wash over the hills, and the cozy nights in front of the fireplace. I like having everyone close together; I feel that the minute we buy a bigger house, we will have more space between us all. Maybe we will just have to have more kids, then.

I am sitting here at home, by myself, the kids asleep since 8 o’clock, and Erik out for the night. It was so nice to just indulge in having a nice dinner with a glass of wine, and reading the paper, something I never seem to be able to accomplish anymore. I looked in on Tess and Owen a few minutes ago, and I noticed Owen’s belly hanging out over his pajamas. I know that kids have that pooch, but sometimes I wonder why all his body seems to be going so soft. His arms are still fleshy, and his stomach seems to grow while his chest becomes more concave. It makes me wonder if he is going to be an overweight Down Syndrome child, since so many of them have issues with weight. And I can tell you why: when I see my child compared to other 3-year olds, he doesn’t have nearly the energy they have. He doesn’t expend as much energy running around, therefore, he will is less active and holds onto more weight. Maybe I am just being too subjective, and not keeping in mind that he was only born three years ago, and maybe it’s just baby fat still. I hope…

Tess was laughing today, and it was the cutest thing. I can already tell that at four months old she is ahead of where Owen was at then, although I didn’t want to admit it. Owen didn’t look at me and laugh out loud for a long time, or maybe I don’t remember. I just know that Tess is the norm, she is what people get to experience every day, and I look at her as this complete miracle. Wow! She can grab that toy! Wow, she rolled over…there will be more as we continue on, but for me, she is such a joy to watch because that painful way of thinking, “will he do it? Or not?” doesn’t make me cringe, like I did with Owen. She will do it, and she will do it naturally. That is why I want another child. To experience the miracle of nature. Not that Owen isn’t a miracle, it’s just that I see how hard things are for him sometimes and I want to help him all the time. He has learned how to walk up and down the back stairs from our deck to the lower deck without assistance. He slowly, ever so slowly!, grabs the next part of the railing and precedes one step at a time. Sometimes he gets stuck and calls out for help. I am so proud of him, and yet a part of me feels so badly for him that it had to take him so long. I feel that way every time he learns a new skill: pride, but the pride is at war with pity. And I don’t want to pity him, because I’m sure that he doesn’t want my pity. If he is Erik’s son, he will never want pity.

Thank You for Reading

2006-05-18T19:11:00.000-07:00

I got a few comments on my blog the other day, and I have to say it made me feel good that people were reading it. I thought that I was pretty much writing for myself, and was pleased to hear from some other moms...

As I said in my comments, as parents of children with Down Syndrome, we certainly put new meaning in the term "mother," especially since there are plenty of women terminated their Down Syndrome baby because, God forbid, their child had special needs.

I took the child that God offered me. I don't have much sympathy for women who think that children with Down Syndrome will have "awful" lives and therefore shouldn't be allowed to even live and be given a chance. I'm tired of defending my choices while there are women out there who think that by terminating they have released their angel back to God (it's true, if you read BabyCenter.com and check out the "terminating for medical reasons"). Actually, don't go there. It will just make you sad.

Brighter post tomorrow...

Happy Mother's Day to Me

2006-05-15T22:11:00.000-07:00

My moods have been so strange lately: one minute I'm loving my life and the next minute I am in such a pissy mood. I don't know if I am about to get a visit from AF for the first time since I was pregnant with Tess, but it could be. It's one of those things where I wish I knew, so that I could prepare for it. Of course, nothing every prepares me for the vile mood I get into, the crying jags, and the fits of feeling fat and wanting to stuff myself with food anyway. I sure haven't missed it. That's one of the things that I loved about being pregnant: I was so even-keeled. My emotions were in check, and I felt as if I was floating with all those good hormones.

So on Mother's Day, I realized I had forgotten the Baby Bjorn at a friend's house, and as Erik slept in (yes, I am going to sleep in on Father's Day), I had to get everyone packed and ready for the beach house. All I really wanted to do was have coffee, read the paper and relax by myself. For once, I really did just want a day to myself with nothing to do but meander through it. That's what got me so irritated. I feel as if Erik doesn't understand sometimes all that goes into getting ready with two kids to go somewhere. He just takes his shower, drinks his coffee and says, "okay, I'm ready." It's not that easy. But after we talked about it, I decided I didn't want to be in a bad mood, and the rest of the day was great. I got a chance to take a long walk out to the Point in Malibu, where the fog finally lifted, and it actually was almost hot. Erik had a small pool for the kids, and they all just played together. Tess slept most of the day. And I got a chance to play Scrabble, which I haven't played in so long. It was so nice to have time to just enjoy a game that involved words. I don't know why I love games like that so much, except that I'm good at them, and I really do love words. I love the sound of some of them. So the day did meander, and I felt rested. We did leave at about 8 o'clock, which was my target time, because Owen needed to get his rest for...

The big evaluation day. Of course, he slept badly, waking up three times in the night. The first time, he went to the bathroom, then he hit his head on the headboard of his bed. The second time, he fell out of bed, and when he fell asleep in our bed, he was having a nightmare and crying in his sleep. Of course, Tess woke up twice, which she never does. So, we made it to his evaluation, and I have to say, he did really well. I think they were all impressed. Of course, we weren't sure whether he should do well, or not, and I'm sure we will not get a lot of extra services because they were pleased with how well he does. But, I also need him to do well so that they can agree that a typical classroom setting is what is best for him. It took about 2-1/2 hours, but in the end, I felt so much better. I was so dreading this, thinking that Owen would just shut down, but he didn't. He played and did what they asked him. Of course, he is delayed in some areas, but I feel like he did well. The only person who irritated me was the school nurse, who wanted a detailed rundown of Owen's medical history and family history. When she came to the part about whether I had taken the amnio, I politely said no. Then she asked how the AFP tests came out and I said we didn't do any testing. She looked at me a little funny, and when she asked about Owen's sibling, and the testing we did for her, I said we didn't do any testing with her either. I said, "There was no point. We decided to take what God gave us." "Oh," she said, "very religious." Then, she asked me if there were any Down Syndrome people in my family, and I said no. So she said, "So it's not hereditary." Okay, people, come on. It is a FLUKE. It happens. Even I paid attention in science class when they talked about Down Syndrome and explained how it's not hereditary.

Now stupidity, that's hereditary.

Busy, Busy, Busy

2006-05-10T13:45:00.000-07:00

It seems as if life has been so incredibly busy these days, with work, and therapies, and weekend events. I feel as if I can barely catch my breath. My hands have broken out again (I have eczema, and it gets worse when I am stressed) and I have to figure out what the source of the stress is. I think I am stressed out about all this IEP stuff that is about to happen. Owen has his evaluation by the school district next week on Monday, and I am not sure if he will shut down, or perform beautifully. In some ways, it would be good if he doesn't perform that well so he will get more services, but you hate to watch your child underperform, too. I want the best for him, but I feel as if there is nothing that will be as good as I think it should be. I know that I am afraid of the whole idea of change, and as soon as he turns three, our lives as we know it now will change. The carefully orchestrated days with certain therapists will now all be lumped into school four or five days a week. I will actually have to let my son go, and deal with the next step of growing up (hmm, what a concept).

I took him for some cranial sacral therapy yesterday with the therapist who worked on him when he was a baby, and I learned a lot. This is the first time she has seen him since he was just crawling, and he is such a little man now. I think she was really impressed with him. But because he is a child, and doesn't want to be worked on, she had to take her hands off him and work in his energy field (I know, it sounds really corny). At one point, she told me that I needed to watch what I think about because Owen can sense my fears. At that point, he got up and walked away and put some distance from us. Jennifer asked me what I was so afraid of. I told her about the whole school thing and she told me that I need to understand that Owen is very intuitive and picks up on that. Of course, now I know why he had such a hard time at school yesterday. In fact, the teacher said she almost called me because he was upset on and off all morning. I think he does sense my fears and he reacts to them. Jennifer told me that Owen is here to teach me things, and possibly he is here to teach me how to let go of my fears, let go of things that I cannot control. I think she may be right.

So last night, after his afternoon of cranial work, he went to bed. He woke up once to go the toilet (way to go, my little man!), and then he fell right back asleep and slept the rest of the night. If that's what we got out of his therapy, then I am happy. It was the first good night's sleep I have had in a while. And, of course, my little lady just slept through the night and woke up at 7 a.m. with a smile on her face.

My Little Olympian

2006-05-07T21:07:00.000-07:00

Today we took Owen to the Special Olympics Mini Meet. We saw at least three other families we knew, so it was kind of nice to spend the day with them. We entered Owen in three different events, and I was so proud of him for running the 50-foot run, and then he did the basketball hoop (which he was very good at!) and lastly, he did the T-ball. Of course, Erik helped him, but he hit the ball. Then they gave out little ribbons. It actually ended up being a lot of fun, and I was glad we brought Owen. I think that it taught him a little bit about competition, even though he's so young, but at least he wasn't scared off by all the people. He actually did run down the lane that they drew in the 50-foot run.

As for me, I looked around and realized how lucky I am. The Mini Meet was not just for Down Syndrome but for all special needs kids. I saw some kids who were in wheelchairs, who couldn't communicate, who couldn't walk, who were much more severely handicapped, and they were there, with their parents. Being cheered on. And their parents loved them. But more than anything, I felt so grateful to have Owen and Tess. To have this amazing little boy who can do everything he can do. And I remembered in the back of my mind after Owen was born how jealous I was of every parent that had a typical child, but I forgot about those parents who had children with other disabilities, who didn't know either until after birth, and who had to deal with much, much more than I ever did, and they probably still thank God for their wonderful child. I think we are given children who teach us many things in many ways. I think that children with special needs, or "handicaps," teach us about life, and about how "handicapped" we are in our own thinking. There is nothing my child can't do if he wants to, and every day, he teaches me about patience, and love, and acceptance. I watch him with his sister Tess, and when he hears her crying, he comes running, saying "baby, baby," or "okay, okay," to let her know that it's okay. He has never once tried to hurt her (as I heard so many other parents say of their older child when a new baby comes along), but he only wants to make her laugh, or touch her. In the morning, when he gets up, he wants to just sit with her and stare at her.

Every day, I am reminded how lucky I am, and I hope I never forget that.

Down Syndrome Overload

2006-05-06T10:11:00.000-07:00

This past week, I attended the Down Syndrome Assoc. of LA's spring luncheon, attended my MOMs support group, and we are heading to the Special Olympics mini meet tomorrow, and part of me feels like it's Down Syndrome, all the time. I know it's just been a busy week, but I feel as if all I have been doing is talking about Down Syndrome and I feel as if I need to go away for a little while from it, and just be a family, with no talk of abilities, or disabilities, therapy, education, milestones, etc. Sometimes I just want to not talk about it, and instead dwell on the normalcy of my child and his life. But it's hard not to, especially when people ask me about him, or comment on him...

I brought him in to work the other day because I needed to check some e-mail, and he enjoyed it so much. He loves to run down the halls and laugh. Everybody thought he was so cute, and my boss was entertaining him so much that he didn't want to leave. Then the next day when I went into work, everybody comments on how well he seems to be doing, and how much he's grown, and I wonder, do people comment like this on other kids who come in? Other 'typical' kids? I mean, I guess it's flattering that they all seem to be so enamored of him, especially since he is such a charmer, but sometimes I just get tired of the questions, and having to explain the therapies he is in, and where he is at in comparison to a typical child his age.

Anyway, I met some really great parents on Tuesday at the DSALA luncheon, and in some weird way, it feels good to be a part of something. I mean, I didn't ask to be involved with this group, but nevertheless, we are a part of it, and somehow I feel that by being a part of it we will be enriching Owen's life in ways that we can't begin to fathom right now.

On Wednesday, we had our MOMs support group, and it was so great. I never laughed so hard, and yet, our conversations got really tough and really gritty about some of the issues our children will face, including health issues. But, as moms, we never lose sight of the fact that there is a lot of hope for our kids, especially given that we are one of the first generations utilizing the early intervention, which is helping our kids advance much more than DS kids in the past. Plus, I feel that as a group, we are carving out our specialty in Down Syndrome so that we can educate other people. As I said before, though, sometimes it gets to be a chore educating people, especially when I find so much ignorance out there. But overall, I am excited about the possiblities that lie ahead.

As for Owen, he is sick again, and I just don't understand how he can have so many colds in such a short time. Then people tell me that the more sick he is now the less sick he will be when he starts school. Hmmm... I'm not sure I'm buying that one, because he is barely in school as it is. So where does he keep getting these colds from? And, of course, Tess is congested as well. But for some reason, I feel like she is a stronger, healthier kid, and I'm not so worried about her. Owen's breathing is so labored at night when he has a cold, that I wonder if he can even breathe. Sometimes I hear him hold his breath, and then I wait for him to start breathing again. It scares me, and the other thing is that it keeps me awake all night. Meanwhile, the newborn who is supposed to be keeping me up all night is actually sleeping through the night until 6 or 7 in the morning. I truly think she is the only one who gets a good night's sleep.

The funny thing I have realized is that Owen has now started to wake up in the middle of the night, and come into my room, because he (drum roll please) is potty-training himself at night! I couldn't figure out why he was waking up, until I realized it's because he has to go to the bathroom and doesn't want to go in his diaper, because he is potty-trained during the day. So what I thought would be a long time before we potty-trained him at night, is actually happening now, and he is self-training. Can you believe it? My superstar child is actually waking up to go to the bathroom. The problem is that he has a hard time falling asleep again. But I can't ask him not to wake up since we have trained him to tell us when he has to go during the day. I'm sure we'll get through it, as I walk through my days sleep deprived, but also cheering my son on for the amazing job he's done at something other parents of typical kids have had a nightmare time with.

Besides, before I know it my children will be grown and I will be saying, "Remember when?"

Growing Up So Fast

2006-04-28T14:25:00.000-07:00

I took Owen for a haircut yesterday, and of course, he cried the entire time he was getting his hair cut (those sensory issues, may they go away!), but after it was done, I wanted to cry! He looked so grown up, and it made me realize that in a few months he will be three years old. I can't believe he is already almost three...

Then I came home and looked at my daughter, and she is already three months old, and getting older by the minute! How does this happen, how does time go by so fast?! I remember before I had kids when I would be at the office and the days seemed to drag. I rememberd looking at the clock and noting that the minutes were dragging...then, it's like my life sped up when I had kids. The minutes that used to drag now fly by in increments of days and weeks. Before we know it, our kids will be grown ups. And that scares me. I already am feeling sad that Owen is going to start school in a few months, because for now, I feel as if I can protect him and direct his life. When he starts school, how am I going to keep him from the demons that haunt me: sexual predators in the form of teachers; bullies; just plain mean kids; and the general stumbles he will make when he tries to navigate stairs, or playgrounds, etc. How can I not be afraid for my child?

My MIL recently gave me a book called "Those Are My Private Parts," written by a mom and illustrated by her four-year-old daughter. It is an amazing book and one that should be read to your child, no matter whether boy or girl, toddler or teenager. It is a book that speaks in a child's language about what is appropriate and that is it NOT okay for someone you know to touch you in your private parts. In the back of the book, the author lists the statistics of child abuse and that alone is scary. What's worse is that one of the statistics says that children with disabilities are more likely to be molested. I hope any of you reading my blog will buy this book and read it to your child, so they can feel okay about telling you if someone is touching them in their private parts. The website is: http://www.thosearemyprivateparts.com/index.html

If you have a child, please take a moment to order this book and read it to your child!*

*I have no affiliation with this author, and I do not make any money off the sale of this book

First Sentence!

2006-04-25T17:13:00.000-07:00

The other day, my husband called me into the bathroom where Owen was sitting on the toilet. "Listen to this," he said. "Owen, do you want to fly?" he asked (to deal with his sensory issues, my husband will play with Owen, lifting him over his head, to fly). Owen looked at me and said, "Daddy, I want to fly," and did the Daddy sign, as if to emphasize what he was saying. I was so proud of him I almost cried. He said a sentence, and not a two word sentence like "Daddy fly," but the whole sentence.

Then, a week later, I came home from work, and Owen was playing with his babysitter. He loves her so much and she really works with him, reading to him, playing ball, etc. Anyway, as she was getting ready to leave, I asked her if he had gone to the toilet. "Yes, about a half hour ago," she said. Then, Owen looked at me and said, "I want to go potty," and did the sign for potty. I almost fell over. It was clear as day. I thought maybe I was wrong, and his babysitter looked puzzled because he had just gone, but I put him on the toilet anyway and sure enough, he went both pee and poop. I was ecstatic. My son was speaking in sentences!!

When we went to speech the next day, I told his therapist about it. She was really impressed. And sure enough, peppered through the next week or two, he would say a sentence, beginning with "I want..."

I am so proud of my child, and so hopeful that he will be able to communicate by the time he gets to school. One can hope, right?

Now, if I could only get him to say "Momma"...

Food for Thought

2006-04-25T17:05:00.000-07:00

I read another person's blog today, who commented on their approaching 38th birthday, and their sadness at not having fulfilled goals yet. I can so relate to that. I turn 39 next month, and I still feel as if there are so many things undone, so many people unmet, so many words unwritten. I always thought that I would be a published writer by the time I was 30, and then I thought maybe by the time I was 40, and now, I don't know what my next "due by" date is. I know that I didn't think I would have two wonderful kids who would interrupt my career, and am grateful for the hours I can spend with them, just hanging out watching them grow and learn.

I too feel as if my goals haven't been met, but my goals have also changed. All my life, especially when I was younger, I always thought that I would do something really important someday, like write a book that would change people's lives. The other day, I finally realized that I have done something important: I chose to have my child with Down Syndrome. I didn't cave to society's views of testing for everything, and I allowed my child to be born without judgment, or without having failed a test before he was even born.

Lately, I've been thinking that maybe my life isn't about publishing a book, but maybe it's about connecting with other parents who have children with Down Syndrome. Maybe I am doing my most important work right now, but I haven't looked at it that way. Maybe we are all busy living the lives we were meant to live, and that's okay.

Back to Work

2006-04-15T11:40:00.000-07:00

I started back to work this past week, only part-time, but still, it means time away from my kids. By the way, it's so nice to be able to say "kids" (plural), only because I never thought I would have more than one. Kids....I just enjoy being with them so much. Sometimes, I wish I could just stop time, and freeze it, right where we are: with Owen walking (and now starting to run in that funny Frankenstein way), saying "Wiggle Bay" from the Wiggles show, and asking me if he can hold baby. Then there is Tess, who is starting to smile and laugh now, she's not so serious. For a while, I thought she was going to be this very serious baby, since she already had the forehead lines, and she would look at me with this really piercing look. But, she is starting to do what all babies do, expand her world.

In a few weeks, we are going to enter Owen in the Tri-Valley Special Olympics Mini-meet, which is for babies 6 months old to kids 8 years old. They have races such as "50 foot run", and "5-foot roll", which sounds fun. I had a friend go last year and she said it was so cute, especially the baby contests. You can find out more information through the DSALA site (www.dsala.org).

I feel like I had so much to write about the other day, but now I can't think of anything to say except it's almost Easter, and Owen and I have been practicing his Easter egg hung abilities (so that the older kids don't beat him out of any eggs).

I'll write more later...Happy Easter!!

Owen in Class

2006-04-07T21:37:00.000-07:00

Today was Friday, and I took Owen to his drop off transition-to-preschool class. It wasn't his usual class, because he is taking swimming lessons (with the Swim Nazi), and couldn't make the early class on Tuesday so I brought him today. It was a bigger class, but a lot of the same kids that he was in Mommy and Me with. When I came back to pick him up, I was early, so I watched them for a while. It was so cute, and I was so proud of Owen. He played outside with all the other kids, chasing one girl, Charlotte, to the slide, then watching her come down and following her around again, then turned around and joined some other kids who were playing with toys in a sandbox. I noticed much more of a camaderie among the kids, now, different from when it was Mommy and Me. I'm not sure if they have just all grown up, or if it is different for them without all the moms around. Then they all sat on the bench and they did the ABCs, and got snacks. I saw Owen take his snacks like all the other kids, and eat them, as happy as pie. I wished I had a camera, just to show other people how normal it all was, and how much he belonged.

I ran into a couple of moms I hadn't seen since Owen was about one. Amazing how so many of them were at least 40 with their first child, saying it would probably be their only one, and now they have all had a second, even before me. It makes me feel older than I am, wondering how I got into this weird world where people in their 4os are having typical kids, and I was 35 and had a child with Down Syndrome.

Today was Friday, and I usually have a babysitter but she told me she had an appointment. So I arranged my day differently, and took Tess with me to get my hair cut. Later, around 5, I went for a walk around our neighborhood, and sure enough, I see her walking another little boy who she also babysits. I couldn't believe it, so I went over to her and said, "You're working for her today?" She kind of mumbled and said that she came after her appointment and is working later for her (we use her only from 9-5 because it costs money to have her stay late and we have to watch our budget). I know this other mom has full-time help and doesn't work, and has two kids. But come on, she has to take my babysitter, too? It made me so mad, mainly because I felt betrayed by my babysitter. I feel like I can't trust her anymore, like next time she says she has an appointment, I'm going to be left in the dust, and I have to go back to work next week, I can't afford to stay home on the days I need to be there. The funny thing is that the woman she was sitting for used to be a friend of mine, and it's more that I don't trust her to try to pay more money to use my babysitter. I don't know, it's so weird. The thing is that I think the babysitter really loves Owen, or at least I used to think that until today. Today I just felt sad, because I don't trust her anymore. I suppose it won't last forever, though, eventually Owen will be going to school and we won't need a babysitter. And, as Erik said, we need to look at the big picture: we need her now, but when Erik is done with the new house, he may be staying home again with both kids, so we won't need her.

I'm So Flattered...and Excited

2006-04-05T14:23:00.000-07:00

So yesterday, I got a call from a person who we met though the Down Syndrome Association of LA (DSALA). He has a son who is 7 or 8 years old. He has been working with Dr. William Mobley, a scientist who has been working at developing a drug that will help kids with DS have a better cognitive level so that they may be able to one day live independently, and be able to do what other people do. We saw him speak at the DSALA luncheon last year and it blew me away. He breeds DS mice, and then studies them. It's this amazing study he is doing, and it's hard for me to explain, so here is the website of the foundation he is doing this research through: www.dsrtf.org (sorry, I don't know how to link it, so you might have to cut and paste).

Anyway, I got a call yesterday, asking if I would be interested in advising them in doing some PR so they can raise awareness, and raise money to start clinical trials next year. Now, when I spoke to Dr. Mobley at the National Down Syndrome convention last year in Anaheim, CA, I asked him again how close he thought he was to this discovery, if you will. He said that he is about ten years away from having something. I asked him, "so you think this will allow my child to be like typical kids, and get good grades, and eventually hold any job he wants, and maybe get married?" He said, "you better plan on inviting me to your son's wedding, because I plan on dancing at it." For a doctor and scientist to be that sure, and that willing to give me so much hope, he must be on the verge of a great breakthrough.

Now, when I asked this person to give me a little more information about where they were at, he said that he has developed a drug that they have used on the DS mice, and it has cognitively brought them up to the level of the typical mice. So, they want to start clinical trials and see if this will work. If that's the case, then his time frame is about right, because Owen is now almost three, and that gives them seven more years to do trials and studies and perfect it. Wouldn't that be so great if our kids could be able to decide to do whatever they want to, and not be held back by their inability to process life and all that goes with it? I know there are probably a lot of negative factors to consider as well, but for now, I'm just excited by the possibilities. Stay tuned for more...

A Different Life

2006-04-04T16:51:00.000-07:00

I was thinking the other day about where my life is now: two kids, and thinking about one more before my body shuts down the baby-making function. What if Owen had been a typical child? Would we have stopped with him? Would he have been 'enough'? I think about this because sometimes I look at Tess, and how round her eyes are, and I wonder, 'would Owen have had eyes as round and big as hers if he didn't have Down Syndrome?' I know that is impossible thinking, but I do it occasionally, so I don't think there is any harm done. I was reading over an old journal the other day from when I was pregnant with Owen, and I talked about the possibility that we would probably just have this one child. That was before we had him and knew he had Down Syndrome. Was this God's way of making sure we had another child? If each child is meant to be (to some extent, because we know that we can control getting pregnant or even continuing a pregnancy), then could God have been gently telling me that one wasn't enough for us? I mean, I am so glad that I have both my children and I love each of them, but if Owen had been a typical child, would my mindset be what it is now? Would I have gone about my business, returned to work, continued with our lives the way they were? Owen was such a huge adjustment for us, especially with the news of Down Syndrome. It literally changed the way I saw things, including my job, my career, my life, my relationships. It both discouraged and encouraged me. It made me who I am today, and I am not the same person I was three years ago.

On the other hand, I have friends who are all having their second child, and, of course, everyone's child is fine. In fact, a woman who used to be a friend of mine, who kind of went off the deep end and stopped talking to me, just had her second child, and he is a perfect little boy. I told my husband the other day that it seems the worse off you (a nod to all those crack-smoking teenagers) then the healthier your baby is, right? I mean come on, I've played by the rules all my life, I've done everything right, I've been nice to other people, and out of 800 babies born, my child had Down Syndrome. Yet there are people out there who abuse their kids, torture their babies, do meth while they are pregnant, smoke a pack a day, and generally treat their babies lives like shit, and their baby is fine. Am I not seeing the karma here? Did I miss the boat? Should I have been a really messed-up person and maybe my child would have been fine?

Too many questions with no answers...so I'll stop now.

Reflections

2006-03-29T21:56:00.000-08:00

I had such a wonderful day today. I took Owen and Tess to the zoo, and we walked around for about two hours. Owen was having such a good time being out and able to run around (well, his version of running). The rest of the day was just one that meandered, and I didn't want it to end. When my husband came home, he told me he was going to make dinner. He made this amazing dinner of steak and scallops. It was so divine. So I decided that we had to break out a really nice bottle of wine. I opened this bottle that he had given me for Christmas (we decided that we weren't going to spend money on gifts for each other for Christmas anymore because we really feel it's about the kids, and besides, we always donate to a charity), and it was amazing. See, both of us had bought each other a really nice bottle of red wine, and they both were sitting there. I decided there was no time like the present. It was a 1995 bottle of Italian wine that was good from start to finish. Each drop was like silk, and there was such a smooth finish.

Anyway, while we were having dinner in the dining room (and our son was watching The Wiggles for the 50th time...I know, we are such bad parents!), Erik asked me if I felt like I bonded easier with Tess than with Owen. I told him that I did, mainly because their births were so different. With Owen, he was whisked away to the NICU, and for two weeks I had to visit him there while he was hooked up to machines. With Tess, I was allowed to breastfeed her right after my surgery, and then she was in the room with me. And maybe because she didn't have a diagnosis, maybe because she was my second child and I was more prepared, and maybe because she was my daughter, I felt closer to her right away. I loved her instantly, and with Owen, it was a slower growing love. Not that I don't love him to death, and he is so special to me, but there were so many factors with him from the start: a birth resulting in C-section; in the NICU for two weeks and then the DS diagnosis. With Tess, she was okay from the start, and I was much more relaxed at being a mom. Plus, I had been trying for her for a lot longer than with Owen, and she followed a miscarriage loss. Why wouldn't I immediately love her when I felt like we had struggled much more to have her?

I think birth order definitely defines a child and defines how a parent perceives a child. She is my second, and most welcome. Owen was my first, and I was a little ambivalent about him, because we got pregnant right away and I didn't know what to expect. He just happened, and boy did he happen! So I think that circumstances change things.

Actually, I can't write anymore because I think I've had too much wine and I'm sleepy...

April Showers

2006-03-28T14:53:00.000-08:00

It's almost April and the rain is here. It will be raining for the next day or so, and in a way, I'm glad. Living in LA, when almost every day is sunny, I always feel as if I have to take advantage of the nice weather and be outside, and then I feel guilty for staying inside (must be a throwback to my life in Michigan: you never let a nice day go by without taking advantage of it!). So, I feel as if it's okay to stay inside and ponder my life, and enjoy my kids, and just let my day unfold. I have been printing pictures of Tess and Owen, finally!, so that I can show both of them off. I am so proud of my two beautiful kids, and every day I am still so amazed that they are mine. I often wonder why they chose us, what made us so special? I was asked today by a friend how everything's going with two kids, and I think she expected me to start complaining, but I couldn't. Tess is sleeping through the night except for one feeding, usually around 4 a.m, and then she's back to sleep until about 8 a.m. She's such a good girl, and so sweet. She really doesn't complain much during the day, unless she's hungry, or her diapers need changing.

I have to digress here for one moment: I was in for a big surprise with Tess when I realized that she actually cries when her diaper is messy (as a typical child will do). My friends and I who have Down Syndrome babies all laughed when we realized that our child never complained when their diapers were dirty, in fact, sometimes I would realize I had let it go way too long before I changed Owen. Now, with a typical child, they actually cry when their diapers are dirty! Who knew?

So, together, I think I have two of the best babies in the world: they eat well, sleep well, don't complain much and aren't too fussy. Although, lately, Owen has begun to imitate the baby's cry because he thinks if he cries like her, then I will pick him up right away and pay attention to him. Boy, that kid is smart, I don't care what those scientists say about his mental ability!

Progress, at Last

2006-03-27T19:52:00.000-08:00

I took Owen to speech today, his usual Monday routine. Lately, we have been doing something called "co-treat," where he works with both his speech therapist and an occupational therapist in a therapy gym. It's a great approach for him, since he has some sensory issues, to be able to try to get him to use his words while they 'play' with him in the gym. But the last three times I have been there with him he hasn't wanted to do anything (of course, it could be because he has been perpetually sick throughout the month of January and February). I have kept him from his speech therapy for two weeks now, just to let him get healthy again and not push him.

So today, after his initial shyness, he warmed up and began to play. His teacher, Jana, kept calling out to me every time he said a word that we had been working on. I could see a look of astonishment in her face when he said "up" instead of "pu" and then when he said, "swim," finishing the word (instead of dropping the 'm'). She was really impressed with him, and I could just see her mood go from good to overjoyed. Funnily enough, I had asked her last week when we did the one-on-one speech (he gets speech twice weekly), how does she not get frustrated. She said she does, but the reward is there. And today, I saw the reward. I saw Owen finish words, and say words, and I know that the repetition that I insist on at home was working. I was so frustrated with him the other day because he refused to say milk (he says "ilk"), he would only do the sign, and I wanted so badly for him to say the word, that I almost, almost tried to reprimand him by withholding the milk. But then I thought about how mean that was, and how a two-year-old has no idea why he can't have his milk.

But for me, it's so frustrating. I guess that is probably why I never became a speech teacher, because I wouldn't have the patience for it. And yet, and yet...ordinary people like me think we could never be the parent of a special needs child because we don't have the patience. God thought otherwise, because rather than being a speech teacher all week long, I am now a speech teacher for life: 24/7. So I will persist and drive away my impatience for as long as it takes. And just like many of my fellow parents of children with special needs, we don't question the calling, we just answer the call.

Fun at the Park

2006-03-24T21:20:00.000-08:00

I decided to take Tess and Owen to the park yesterday; but didn't plan on the emotional toll it took on me. I had Tess in the baby Bjorn and Owen in the stroller, since we walked there from our soon to be new house. When we got there, I felt so out of place, and instantly thought of what a mistake I had made. See, Erik usually takes Owen to the park and they come back laughing and Erik tells me what a good time they had and all these kids Owen played with. Well, my husband is 6 ft, 7 inches, so of course he can lift Owen up to the highest monkey bars, and then he does the same for other kids, and they all end up having a good time. Here I am, with a baby papoosed to me, and Owen looking so longingly at the kids at the top of the big slide. He stood to the side and watched as they slid down, and he clapped for them. Then, when he wanted to climb up from the bottom (because that's all he could do), they kept telling him to get out of the way, because they wanted to slow down. It's as if everyone was in fast motion, and Owen was in slow motion. I wanted him to be able to climb up as fast as they did, like monkees, and slide down, or run through the sand to the swings. But instead, he sat down, and watched them through his little glasses, sifting sand through his hands. I wanted to cry.

So I took him over to the baby slide, where I could help him up to the top and then hold his hand while he slid down. He was fine with that, but again, every time some kid came back around they were too impatient to wait for him, so I had to take him off and let them go. I saw one mother looking at me like, "well, aren't you going to get your kid out of the way?" even though she clearly saw that he was a little slower than the other kids. It pissed me off. I felt like I was caught in some weird music box that was playing some off-key music that hurt my ears. Even when one mother I knew came over and said hello, I couldn't really carry on a conversation. I was sweating, and felt like I just had to get out of there.

And Owen didn't even protest when I said we had to go! He didn't fight like other kids, he didn't dig his heels in, or scamper away to another set of monkey bars. No, he went willingly with me, and it made me hate myself. All the way home, I just wanted to cry, but I didn't. Why do I want Owen to be more than he is? Why do I feel like I am lacking in some way because my child can't do what other kids do? And why do I care? Why do I want him to be just like any other child, because he is so special the way he is? Why can't I just accept him? I think it's because I can't really accept myself. I've always been such a perfectionist, and it's hard to see him okay with being just the way he is.

So today I took Tess for cranial sacral therapy, and Jennifer, the therapist, and I talked about what happened at the park. She asked me why I still couldn't accept the diagnosis that Owen has, and furthermore, why I was so fixated on it. She told me that the Maori people (see previous entries about Maori healers that I went to), believe that those who have a child with Down Syndrome are blessed. They are chosen. I thought about that all the way home from the session with her. If I lived in New Zealand with the Maoris, I would feel proud of myself and my child, proud of being chosen. Here, in America, I feel shamed, as if I did something wrong by having my child with a disability. Is that so bizarre? Perhaps I am just thinking the wrong way. Maybe I should begin thinking the way the Maoris do, and feel special, chosen. Maybe I should block out all the negative thinking that is so American (if you can't have perfect children, then why have them at all? After all, there are tests you can take to tell you if you child is imperfect, before they are even born.)

It's been a long couple of days and I'm tired. I hope that I can learn to redirect my thoughts to that I can erase some of this negativity, especially before my children catch wind of it.

The House of Sickness

2006-03-21T17:14:00.000-08:00

We are all just getting over a nasty flu bug: Owen had it first, then I got it, and now Erik has it. Thank God Tess didn't get it, but I think because I am breastfeeding she is less likely to get a virus (or so they say). This is my last week on maternity leave and I have to spend part of it in bed! Not a fun thing. Owen was supposed to start his new class today, but we had to cancel because he still has diarrhea, and even though he is potty trained, I didn't want him to have an accident at school. He actually has been coming into our room at night to tell us he has to go potty, especially since he hates going number 2 in his diaper. I think maybe he is self-teaching how to potty train himself at night. We never have to worry about him during the day, it's only at night we have him in diapers. I love to play that card when I talk to other moms with typical boys, because I can see how irritated they get that Owen is already potty trained, when their child is not, because, of course, my son has Down Syndrome so everything should be delayed, right?

I've been really sad these past couple of days; mainly because this time home with both my babies is coming to an end. I have been so happy with the pregnancy and then the birth, and now having both kids to take care of, that I almost resent having to go back to work. Thank God I only have to go back part-time. I was thinking today how fast life is going by; how it's been 12 years since Erik and I met, and it will be our fifth year wedding anniversary this year. Where has the time gone? And what is to prevent it from slipping away even faster? I feel like one day I will just blink my eyes and my children will be grown, and I will be trying so hard to remember what they were like when they were babies: the fresh, newborn smell and the little boy dirt smell...If only they could bottle those smells.

The baby's crying, I've got to go.

So Sad to Hear...

2006-03-10T18:08:00.000-08:00

About Dana Reeves. I can't believe she died. I really thought she would fight the cancer, and beat it. She seemed so strong, so upbeat about everything. I think what makes me the most sad is that her son is now alone in the world. He has lost both his parents. How much crueler can life get? I told Erik that is why I wanted to have more than one child, so one of them is not left alone in the world. But I suppose there are never any guarantees. What scares me is that I used to smoke, and she never smoked, and she still got lung cancer. It all comes down to nobody is exempt. I feel as if once we had a child with Down Syndrome, which we thought we were exempt from having anything but a typical, healthy child, that suddenly the floodgates were open. Suddenly, bad things happen to good people; people who have always played by the rules. That's how I feel about Dana Reeves. She played by the rules, she stood by her husband, she fought like hell. And still, that wasn't enough. It's so sad, and it scares me, because I wonder what is ahead for me and my family. I feel as if every time I turn around, there is another person I know who has some form of cancer. And it's not necessarily the elderly, either. It's happening to more and more people, younger and younger. I suppose I just have to really go back to believing in fate, believing that things happen for a reason. But I'm losing my faith and I'm not sure quite how to get it back.

One Month Already?!

2006-02-28T16:41:00.000-08:00

Tess turned one month old a couple of days ago. I can't believe she's already been here for one month! I know that time will just fly by, and it makes me sad. I so love being home with both Owen and Tess. I really don't want them to grow up and get older. I want them to stay just like this, and we live each day, caught in a time warp, nobody aging, both of them babies, and me perpetually 38 years old with the prospect of possibly having another.

Tomorrow night is the support group meeting that I started: I call it MOMs (Mentoring Other Moms) because we all try to reach out to other moms with babies with Down Syndrome. All the moms have babies with Down Syndrome, Owen is the oldest. One of the moms has a child with William Syndrome, which is very similar in delays to Down Syndrome, so she has joined us. I just found out one of the moms, who has a little girl named Rachel, will be taking her in for heart surgery this week. She was born with not just one, but three holes in her heart. If anyone out there is a prayer goddess, please pray for her.

I love the group of women that I get together with. In an alternate universe, if we had just met on the street, or at the store, these would probably be the kind of women I would hang out with. But we didn't. We met because we all share a common bond, our child was born with a different genetic makeup. I have to say, one of the reasons I love getting together with these women is that there is no pretense, no bullshit. We just talk, and we get to the heart of things. We don't bother with trivial conversations; we talk about what our fears are, what our hopes are, what we long for for our children. We only meet once a month, but it is like therapy for the soul. Maybe God did know what He was doing when He gave us our children. After all, I know that somewhere along the line, we are going to change people's perceptions of Down Syndrome, if only a little bit. And that will have made my son's life worth sharing.

Random Thoughts

2006-02-22T08:05:00.000-08:00

I have finally been able to get out and take a walk, and not just around the block either. The weather has been chilly here in LA, which has made for some gorgeous clear days. I have been trying to get my strength back (not to mention my weight down), and went for a long walk yesterday. I walked up to Mulholland Drive and did a portion of the Runyon Canyon trail. I could not only see the Hollywood sign, then the cluster of downtown buildings, but the ocean and the snow on the mountains. This is the season that I love in Los Angeles. I could care less about the hot summer days when it's so smoggy you can't see anything. I love this weather. It's sweater weather...

On my walk, I saw an old woman walking her dog, meandering down the road ahead of me. I was thinking about a friend of mine who just told me she is pregnant with her second child, and she is 43 (she had her first when she was 41). She told me that she was on bedrest because she had just had the CVS test done, and I had to bite my lip to keep from asking her what she will do if there is a chromosomal issue. As my husband said, it's a personal choice. I'm sure she will just tell me she lost the baby if she decides to terminate for any reason. But as I thought about it, I wondered why it is that women having children in their forties (at least the women I know), seem to be having children who are just fine, and typical. And here we are, 35 when I got pregnant with Owen, a whole EIGHT years younger than she is, and we had a child with Down Syndrome. Eight years. Just think of all the kids I could have in eight years...well, not that many, but still. As I thought about this, and saw the elderly woman walking in front of me, I realized that life was passing me by so swiftly, that I could hardly believe I've already been pregnant with my second child and birthed her. And here is this woman, who I'm sure didn't think she would ever be this old this quickly, and she is out walking her dog, the major portion of her life having been lived already.

I keep thinking about how I loved being pregnant and how I love being a mom. I seriously would consider doing this again, even though I wonder if I should just count my blessings that I have two wonderful children and not have any more. But, there is a part of me that wants another baby, and wants to have another sibling for my two kids. I already miss being pregnant, and the wonderful feelings that came along with it. My mom said some women just love being pregnant, and I never thought I would be one of them, but I guess I am.

My MIL said the other day that a friend of hers had called and asked how the baby was, and she told her the baby was fine. The woman was going on about how great it was that this baby was healthy, and made it sound like Owen wasn't okay because he was born with Down Syndrome. I looked at my MIL and said, "We are really blessed, we have TWO healthy children. Owen's just got a little bit different makeup, that's all." My husband's aunt, who is in town from Norway, looked at me and agreed. "Yes, you are really lucky," she said. I just wonder why my MIL will never just accept Owen for who he is, and let it go. I know she loves him...you can't help but love this kid. When she comes in the door, he runs to her and hugs her leg and pats it, saying "Ohhhh," and then he gives her a kiss. He is the most loving child. I think he has really changed people's perception of a Down Syndrome child.

I hear the baby upstairs. I have to get back up there. One more note: she is a great sleeper. She sleeps for four hour stretches, so if I time it right, I only have to get up once in the night. I had to tell my little brother (I know, a childish dig) since their daughter has been dubbed "screaming Mimi" and doesn't sleep at all during the night. But they keep emphasizing to me when they call how lucky they are that their child is "normal," and it pisses me off. What, and Owen isn't "normal?"

Settling In...

2006-02-14T17:50:00.000-08:00

Tess is two weeks old already, what would have been her original due date, plus one day. She went to the doctor today and is already 7 pounds. One day I will tell her how excited I was when she hit seven pounds, and she will laugh... So, I ended up with a C-section, but I have no regrets. I feel like I tried my best for a vaginal birth, and it didn't work out. Actually, my doctor told me that chances are, I would not have been able to have a vaginal birth, ever. It seems that my cranial sacral bone is pushed forward, and leaves a very narrow passage between it and my pelvic bone. She told me that Tess was starting to turn into a brow position, just like Owen. The whole birth was mirroring my previous birth with Owen, but they did let me labor (for six hours, unmedicated, on pitocin!) and it was worth it to feel a part of childbirth. I felt as if we struggled, she and I, and the best solution was a C-section. Anna, the doula I had hired, told me that I did everything except have the baby come out vaginally. After hours of labor, my cervix was not dilating and it began to swell. Anna told me that that was a sign the baby was protecting itself and we would find out when we went into the C-section what was wrong. Sure enough, when I went into surgery, the doctor exclaimed "aha!" when they pulled her out. Apparently, there was a "true knot" in the umbilical cord, meaning it was a tight knot. It hadn't affected her at all up until this point, but if we had tried to deliver vaginally, it could have been very bad. Anna told me she's only seen it three times in the ten years she's been practicing, and twice it resulted in still birth. So, thank God for modern medical science! I have a healthy baby girl, who by all counts, can grow up to be normal and typical and ordinary. So, this time around, I feel as if I bonded so much more! I was able to have her on my chest after the birth, and then they let me breastfeed her for a few minutes in the recovery room. I also got to have her in my room with me. It was so different from Owen's birth, when he was whisked away into the NICU and we had to keep going there, and seeing him hooked up to monitors and feeding tubes. I feel as if this time, I got to feel like an ordinary parent. But the fears have not gone away. They sit on my shoulder and pester me, trying to make me paranoid about her. Both Erik and I keep questioning if what she is doing is normal. How would we know? We thought Owen was typical and normal for two weeks until we found out he had Down Syndrome. Now, we question what is normal. I told Erik that for once, just once, I would like to be a naive parent and believe that everything is fine and there are no problems. But, since we had Owen, our definition of normal, and life in general, are different from the typical parent. I'll write more later, I just wanted to catch up for a brief moment. Still, looking at my child with Down Syndrome, who I am incredibly in love with, and my new baby, I feel so blessed to have them both. I don't think I would ever feel so grateful if I didn't have Owen, and hadn't gone through the mental adjustment that I did. Maybe that's the difference. Maybe typical parents will never appreciate their children as much as I do, because my joy is perhaps more hard-won.

She's Here!

2006-01-30T13:25:00.000-08:00

Almost exactly two weeks early, my water broke. I'll give the whole story later, but suffice it to say, Tess Elise Ostergard, was born on Wednesday, January 25 at 8:27 p.m. As much as I tried for a vaginal delivery, she was born by C-section. I'm not upset, though, we gave it our all, and it was the safest way for her to come. She is beautiful, with long fingers (Owen had short fingers when he was born, because of being Down Syndrome), and a perfect little head. The first thing I asked when they took her out was if they checked to see if she had Down Syndrome...amazing what you think of when you are full of drugs!

She was little, only 6 pounds, 6 ounces, and 17-1/2 inches, but if she had two more weeks in me, at the rate I was eating, she would have been 8 pounds at least! I'm very happy and content, and so pleased that everything went well. My milk has already come in, and she's happily breastfeeding. I'm just so grateful to have a healthy, happy baby.

Almost 38 weeks...

2006-01-22T12:38:00.000-08:00

Today is Sunday, and I'll be 38 weeks on Tuesday. I feel so out of sorts today, and I finally told my husband to take Owen to the park so I could get things done. I have been preparing non-stop for both work and home. We have our first meeting tomorrow with the Los Angeles Unified School District to begin talking about placement for Owen in a preschool: a special needs preschool. It seems so weird to say it like that. I mean, 2-1/2 years ago, we had a baby, and for two weeks we thought he was healthy and fine. He is healthy and fine, but he has Down Syndrome, and after all this time, it sometimes still strikes me as odd that we talk about him having it, since he does seem pretty close to normal on a lot of things. Of course, speech is a big issue, since he talks and talks but we can't understand a word he's saying. I see other 1 and 2 year olds who talk a lot, but their words make sense. I don't know why he can't translate things into our language yet, although, of course, he has Down Syndrome, so he had language delays.

Anyway, I'm in this really blue funk, and I can't seem to get out of it. It's a beautiful day here in LA, not too warm, but the sun is shining and the air is a little crisp. I usually love days like this, but maybe I'm just getting a little sad that this time all alone with Owen is coming to an end soon. I guess I'm a little sad about the changes that are coming, which I know must happen, and I have been looking forward to meeting this child, but there is always a moroseness when change is imminent. I guess I've been trying so hard to make sure everything is in order before she comes, that this morning, I actually found myself at a loss as to what I wanted to do next. I couldn't concentrate, and I realized that I've been so busy making sure everything is taken care of that I haven't had a moment to myself to relax or do something I want to do. So, I made Erik leave the house with Owen so I could have some alone time. I know that alone time will be scarce once the new baby comes, so I'm trying to settle myself and put myself in a mental space that I can live with.

This is how anal I am: my doula told me that when I begin to feel labor pains, call her, and then make cookies. The process of making cookies will help me get through the first part of labor, while she has a chance to get to my house. I told her, "But I've eaten so many sweets, that I can't possibly make more cookies and have them in my house," and she laughed and said, "no, you are making them for the hospital staff and your doula, who will welcome fresh-baked cookies." "Oh," I said, seeing that that made sense (people always treat you better if you bring treats). Then, I realized that tomorrow is our meeting with the LAUSD, and people have told me to always bring something to eat, it helps how they think about you and deal with you. So now, it's on my to-do list, make cookies, since I always have to do things in advance. There is no way I am leaving making cookies to the last minute when I am in labor and don't know what I will be thinking or feeling...how's that for being a total control freak? I will already have cookies made to take with me, but I will also try to make new cookies, if that's what I am supposed to do. Yikes! I think I am overthinking this whole 'having a baby' thing. Maybe I should just stop thinking about it. Yea, right.

Well, I'm off to do a little shopping, some browsing, nothing special. I just want to enjoy these last few minutes alone.

Full term?

2006-01-18T16:29:00.000-08:00

I am now 37 weeks, and I guess that is considered full term...it seems odd, somehow, that it could still be even five weeks before I have this baby (although my doctor probably won't let me go beyond my due date of February 7th). And, at the same time, I could have her any minute! She is sitting really, really low on my pelvic region; in fact, so low that I have to literally walk with my feet outward because it hurts. I never remember Owen being so painful, but then again, I don't think Owen ever dropped. My water broke, and he was stuck. This baby (whose head is down in the right position, yeah!), is really pressing on me. My bladder is working overtime, and I can't seem to go anywhere without having to find the nearest bathroom. But, I am NOT complaining, I am very, very happy to be pregnant, and full term, with all the usual symptoms.

I have a really big event tomorrow night, which I'm hoping this baby doesn't decide to come in between the space of now and tomorrow night, because I am really proud of this event and want to pull it off. I know I can't time nature, but I hope she's listening...

I am so excited to try for a vaginal birth, how crazy is that? I'm actually secretly excited to find out what day she picks for her birthday. I mean, how cool is that that our babies can pick the day they are born? Well, except for all those repeat C-sections, the moms who want to be in control (oops, don't know the repeat C-sectioners, I could have been one of those, and might still be if things don't progress the way they should).

The weather in LA here is so perfect for me right now: chilly, the fog rolling in, and the mountains in the distance covered with snow. This is our winter, and it's exactly how I like it: not too cold, not too warm, but moody and mysterious and lovely.

One Month to Go

2006-01-09T18:29:00.000-08:00

I'm only four weeks away from having this baby, unless she decides to come early. And, the worst part of all, she is now sitting on my sciatica nerve, which makes me unable to walk. I can only limp around the house. Owen did the same thing when I was pregnant with him, and it was right at the end of my pregnancy. I suppose they save the hardest stuff to deal with for last...

I'm getting really excited about trying for a Vbac. I need to be in the right mental state of mind, and I feel as if I am more excited than I ever was with Owen. I was just afraid with Owen. Things change, though.

My sisters are coming in town this Friday to throw me a shower. I can't wait to see them. I will have a bunch of my friends here, and of course, (there is always one), one of my friends wants to bring her child to the shower. I don't understand why people just assume their children are invited, when the invitation went out only to her. And, her child is one of those holy terrors who knock things off shelves and want to pull everything out. I can just see her trying to open all the presents. I told her mom that I would appreciate it if she didn't bring her, but I think she is still going to. I kind of wish I didn't invite her. I only invited her as a last-minute invite because she just moved into our neighborhood and I've been promising that we would get together. Oh well. Whatever happens happens, but I have spent far too much energy on being irritated by her.

So now the countdown is on. We'll see when my little girl decides to make her arrival!

Happy New Year!

2006-01-01T18:30:00.000-08:00

It seems so odd that it's already 2006...I can't quite deny that mentally, I've been a little stuck somewhere around the middle of the year, not thinking this pregnancy would really survive and not willing to look too far into the future to plan for it. But here I am, almost 35 weeks pregnant and it's the new year! I think I've held my breath for most of the year, wondering if something bad was going to happen, to me or this pregnancy, or my family. I mean, ever since Owen was born, I have realized that we are not exempt. Bad things do happen to good people. I know, I know, Owen being Owen with Down Syndrome isn't really a bad thing, I have come to realize. But, it's the fact that he was not what we were expecting, and what everyone else expects and gets.

I have now passed the 40 mark, 40 pounds that is. I have gained 40-1/2 pounds to be exact, and I still have five weeks to go. And, my hands will not stop putting food in my mouth. I don't want to continue to gain a lot of weight because they say it all goes to the baby the last month or so, and since I am going to try to push this one out vaginally, I certainly don't need an excessively big baby to impede the road down the birth canal. I'm hoping the baby comes a little early, since Owen was (although I know that doesn't necessarily hold true), but even if she doesn't, I'm just very grateful that everything seems to be fine and progressing normally. I actually haven't seen my doctor for two weeks, and won't see her for another week, which is fine by me, and she seemed to be very confident that my pregnancy was progressing nicely and I didn't need to make the trek in unless I felt I needed to. I feel pretty good, and even though the baby is sitting very low, which makes me have to pee every 10 minutes, I still am able to go for a 20 minute walk most days. I have slowed down a lot, but I'm figuring that I only have five more weeks until I can get back to walking.

I can't believe how fast the time has gone, and how fast it is going to go. My month of January is already booked solid with work, my sisters coming town, a baby shower, and then, of course, the imminent arrival of the baby. I hope I can keep my wits about me. I already have been feeling the urge to sort through EVERYTHING in my house: every drawer that is full, every closet, every bookshelf. I don't remember being this way with Owen, but I suppose I was. I really don't think I will have this baby until I feel that every last detail hovering in my mind has been taken care of. Then, I'm sure, the time will come. Until then, I really am just enjoying being pregnant and being able to eat whatever I want (bring on those brownies!). I hope everyone (my phantom readers) had a safe and happy new year. And may this year bring many more babies...

The Holidays are Here

2005-12-22T07:27:00.000-08:00

I didn't even think that the holidays would get here so fast, and here they are...I guess because I knew that I would be very pregnant if they got here, and it just didn't seem like a possibility. But here I am, very pregnant and it's the holidays...

I am now at the point where I am having trouble sleeping, and my hands seem to be falling asleep all the time. Last night I woke up twice and they were hurting so much that I was afraid I had been sleeping on my back and all the circulation had stopped to the baby. (I haven't felt her move this morning yet, either.) I was so tired, though, that I just sunk into sleep and slept for 10 hours. Owen didn't sleep the night before because he's getting a cold (which Erik has had all week), and I just can't get sick right now. I don't want to deal with fighting a cold that I can't take any medicine for. (Okay, I just felt the baby move, so I feel better).

I think I'm going to take Owen to the zoo today, since they have the reindeer there. That is one thing I love about living in LA. It's been almost 80 degrees for the past couple of days, and chilly at night, but I can take Owen to the park, and the zoo and out shopping without worrying about crazy weather. Plus, some people have already left town, so it's a little less crowded. And, nobody ever thinks to go to the zoo the week before Christmas! It will be nice to spend the day with him. And the only reason we have this free time is because his speech class was cancelled today. It's funny, because we don't have that many therapy sessions, they are all pretty manageable, but they just happen to fall in the prime time of his day, so I can't seem to do anything else with him, like go to the park, or take him for a walk. By the time I get him home, it's lunch and a nap, and then when he wakes up, it's too dark to do anything. I'm definitely ready for the lighter hours to come back. And since yesterday was the shortest day of the year, we are now on our way to longer days, yea!!

Only seven more weeks until the big event, and I think I'm pretty ready to try for a vaginal delivery. Her head seems to be in the right position, and if she stays that way, I have a shot at it. I actually am going to write a birth plan this time (which I didn't do last time), and mostly because I'm at a new hospital and my doctor said that it should include what I want for the baby as well, meaning the shots, formula when she's not in my room, or God forbid, any kind of emergency measures. I think it's a good idea for my husband to have a guide, too.

I just pray that all goes well this time and there are no surprises...

Nesting?

2005-12-13T07:08:00.000-08:00

I don't know if that's what you call this, because I don't remember having it with Owen, but I've been waking up early, and getting up to get things done. I feel as if there is so little time left and so much to do. I have presents to buy, cards to send, bags to pack, events to plan, and writing to do, all while I prepare for the birth of my daughter, who is only eight weeks away (from the due date, but that's not really set in stone anyway). I feel as if I have to hurry up and get all these monumental tasks done before I can just relax and allow her to come into our lives. I remember feeling the same way with Owen, but it was more about getting through work events. This time, it is about getting through life events. The day before I went into labor with Owen, I had this incredibly long work day, beginning with a 7 a.m. breakfast, and ending with a dinner meeting that I didn't get home from until 9:30 p.m. I promptly told my husband I was exhausted, and fell into bed. I had the deepest sleep I had had in a long time that night, which was a good thing, considering my son was born the next day. I don't know if I mentally decided that when that day was done, I could relax, because there was just so much to do that day. Perhaps our mind does have something to do with it. All I know is that at this point, I have three work events in January, as well as a shower (that, of course, I am throwing for myself, even though my sisters are flying in town for it) that I am planning and taking care of. Oh yeah, and I'm having a baby.

And for some reason, a January baby keeps sticking in my mind. Besides that, I think I feel as if I have to be supermom and superwife these days. I can't stop baking cookies and fudge, only because I have a license to eat as many of them as I want, and of course, I have now passed the magic number of 30 pounds. I have officially gained 32 pounds, and I still have 8 weeks to go! How many cookies can I stuff in my mouth until then? I know that after I have the baby, I'm going to feel guilty about eating sugary food, so I figured I may as well enjoy it until the end. I can worry about taking it off when I finally unload the baby and all the extra fluids. Then, I'll start fresh.

Owen and I stopped by the house that Erik and his dad are building the other day. It's really happening. The foundation is being laid, and the walls are starting to go up. I can't believe we actually got a lot to build on (and a corner lot at that) in such a great neighborhood. People are always out walking, there are tons of kids, and the schools are great. We can walk to the park, the library and Ventura Boulevard. Make no mistake, I love my house in the Hollywood Hills, with a corner view of the Hollywood sign, but my life is so different now. I told Erik when we are old and gray we can buy a house in the hills with the view he wants. Of course, we might be too old and stiff to walk up to it...

Oh, and so far, we've had at least one person come by the house they are building and offer to buy it. There is definitely money to be made off it, but I think I would like to live there first.

Insomnia Has Set In

2005-12-10T04:32:00.000-08:00

I thought I was doing pretty well with my sleeping patterns, until this morning. It's 4:30 a.m. and I can't sleep. There simply seems no point in my tossing and turning for another two hours, so I figured I would get up and get some writing done. I don't remember this insomnia with Owen, and recently, several moms have asked me if I have hit the insomnia stage. I didn't think I would, but it seems as if this baby wakes me up and keeps me up, always from about 4-6. I know it's supposed to be practice for when she gets here, but really, I think it would be much more appropriate if we were allowed to be completely rested by the time the baby gets here and then we deal with the sleeplessness. Oh well. I suppose there is nothing I can do about it. I actually think the insomnia has more to do with the fact that I feel like I have things that need to get done before I have this baby; things I have been putting off because, oh, I suppose I didn't really think this was going to happen months ago when I got pregnant. Strange how the mind works, isn't it? I have a friend pregnant with her first, and she started telling everybody she was pregnant when she was only 6 weeks along. She is now almost twenty weeks, but I often wonder, what would she have done if she had a miscarriage? But I guess I was the same way when I was pregnant with Owen. I just assumed it would work out, I didn't question it, and then I told everybody in my family when I was only 6 weeks pregnant. I suppose it's only when you do have something go wrong that you become very, very cautious.

I can't believe it's December already, and that the year is almost over. I never imagined, back in May when I found out I was pregnant, that I would be sitting here, 8 months pregnant, hoping for time to slow down so I can enjoy these last few weeks of pregnancy. I may never get to experience this again; this may be it, so I want to cherish every symptom, every kick, every smile from people who see my swollen belly. On the other hand, I feel like I'm so behind in everything; that there is still so much to do. I don't want to stress about it, but of course, there are three events at work I am in the middle of planning (which of course all happen to fall in mid-to-late January) and then there are the things at home: Christmas shopping, decorating, my own writing, packing my bag (yes, that would be helpful), Owen's transition meetings, and all things that pertain to Owen. We have our first transitional meeting in January with the Los Angeles school district, and of course, the earliest they could schedule us was late January. I suppose we could always reschedule if I am in the hospital, because for some reason, I feel like I am going to have a January baby. I don't know why, and it could be January 31, but I still feel like she's coming in January, not February. My actual due date is February, so she has a good chance of being a January baby.

That's all for now. I think I'll work on my book, since I feel as if I have neglected working on it.

Maori Healers

2005-12-04T19:19:00.000-08:00

I mentioned before that I had gone to see the Maori healers when I was ten weeks pregnant. They came back into town, and I decided to see them again, on the advice of my doula, who works with them. I also brought my son and my husband, hoping that the head healer, Papa Joe (who works with babies, as well as pregnant women, and infertility), could help my son with the sensory issues he has been having lately. Owen would only let him work a little bit on him, so I'm not sure how much good it did him, but Papa Joe looked at me and said, "Owen is going to be Owen, and he is going to be fine." I really took to heart what he said, because it's true, Owen will be fine. It's just me who doubts, nobody else. Everyone else who knows Owen knows that he will be okay; I guess it's just me and my own insecurities that keep me from believing it. Papa Joe asked me if I knew about the indigo and crystal children, which is a whole fascinating study on it's own. Anna, my doula, when she met Owen, immediately said that she thinks he is one of the crystal children. And, he is fascinated by crystals.

When I had my session with Papa Joe, Anna told me that he would be able to open up my hips and help me get a little more comfortable, and that it would take hours off my labor. We shall see, I supppose, but Papa Joe did this amazing deep tissue massage on me and the baby. I could actually feel the baby following his hands...it was incredible. He also worked on my C-section scar, so that any remaining tissue would not get in the way of the birth. After I was done, I felt so immensely relaxed, and tired. When I stood up, he looked at my stomach and said, "baby is coming early," and I said, "I hope not too early." He said again, "baby will be early," and Anna looked at me and said, "Papa Joe is right nine out of 10 times." So, maybe she will arrive early. It's hard to believe that I have less than ten weeks to go, and if she comes early, that means less than that. I wonder, what must I get ready right now so that I am prepared? What am I putting off that I must get done so that I have nothing holding me back from having the energy to push this baby out vaginally? I must truly be ready and be in the moment.

I truly feel that the Maori healers have such a good energy and are healers. I know some people might think it's pretty out there, but even my husband, who is somewhat of a non-believer in a lot of things, thinks that they are beneficial. My husband is such an amazing guy. After we went to the Maoris, he told me that he absolutely supports my decision for a VBAC, and that he is with me 100%, regardless of what happens. It's nice to have such a great support system. It makes me proud to call him my husband.

10 Weeks To Go and All Is Well...

2005-11-30T16:14:00.000-08:00

I went for a 30-week ultrasound yesterday, and everything seemed really good. The doctor did a 3-d ultrasound (we got a picture, but she looks like a claymation blob), and told me everything seems to be in a very normal range. She weighs 3 pounds, 10 ounces. Wow! Almost four pounds. So at least I can say that of the 30 pounds I've gained, less than 26 of them are fat. He asked me about changing doctors (he knows the doctor I am going with) and I explained that I was going to do a VBAC. He said, "good for you," and we had a conversation about it. He told me there is nothing in my pregnancy that isn't healthy, and by all appearances, I should be able to labor vaginally.

It's funny, because as soon as I made my decision to do a VBAC, I have found nothing but support from professionals: doctors, nurses, doulas. It's all my friends who are opting for a repeat C-section who keep trying to tell me that I should know the risks. I do know the risks, and my doctor already told me that she will not put me or my baby at risk. Also, the baby's head is down, so that is a good thing. I have been feeling the Braxton-Hicks contractions every day, intermittently, but sometimes I'm not sure if it's those or the baby is just stretching my stomach muscles out. I'm really not that big in the stomach yet, for being ten weeks away. But I was like this with Owen. I didn't really pop with him until the end, and then he was early, too. So I think things are fine. The doctor told me that the baby is in the 50 percentile for weight, and measurements. I'll take average, boy, will I take average and normal this time around!

So, the next two months I just have to concentrate on readying myself for the birth. I know this sounds strange, but I'm actually looking forward to trying a vaginal birth, which is totally different from how I was when I had Owen. With Owen, I was so scared and nervous, and didn't know what to expect, that I preferred to go into a C-section; I mean, after all, everbody else has C-sections, how bad can it be? But this time, I'm thinking of it more as a challenge, as a rite of passage, something I will try my best to do. I have been walking an hour every other day, to keep my body in shape, and I have to say, I feel like I'm in pretty good shape. Sometimes, I forget I'm pregnant and start to run through the house to get the phone, only to realize I can't quite run like I used to. I will sometimes start running after Owen, and have to stop myself, because, after all, I am 7 months pregnant. But it's good. I'm happy to be where I am at in my life, and excited about the future.

What is Good Enough?

2005-11-26T15:06:00.000-08:00

I'm a little confused. I've been reading the Internet everywhere, all kinds of blogs, articles, books, everything I can get my hands on. And what I find most disconcerting is people who have had trouble getting pregnant and/or carrying a child to term, and yet they still take into consideration when they can get a CVS or an amnio. Isn't the point of having a child to have a child? Not to decide, well, I'll go ahead with it only if the child is perfect? I mean, what is so bad about having a child with Down Syndrome? I really don't understand it. I mean, if you get pregnant and continue that baby to term, weren't they meant to be? Wasn't there a reason you were blessed with that particular child? It is still pretty rare to have a child with Down Syndrome. One out of 800 babies. That's a lot of babies. But time and again, I read about women who are so determined to get pregnant, only to prepare to test for something they don't think they can handle. Well, guess what? If you had asked me, I don't think I could have handled a child with Down Syndrome, and yet, I couldn't imagine how lonely my life would have been without him here these past two and a half years. He has brought so much joy and wonder to my life, and fulfilled me in more ways that I can say.

Just last night, my husband and I took our son to a party with several friends of ours, many of whom have children about Owen's age. Guess who everyone wanted to say hello to and play with? Yup, Owen. Guess who smiled and laughed and kicked the ball around? Yup, our Owen. He was the life of the party, while the other kids hung back with their parents, or cried and threw temper tantrums.

It's funny because right after we had Owen, we swore next time we got pregnant we would take the amnio, just to be prepared. But when we finally did get pregnant again (after a miscarriage and nine months of no pregnancy), it didn't matter. We were just thrilled to be pregnant again and we both agreed that we weren't going to have a CVS test or an amio. We just put our faith in God. And who knows what God has got in store for us? We will find that out after our baby is born. Of course we hope she's healthy and chromosomally perfect (and not autistic, as long as I'm asking), but we set out to be parents and we are going to do the best we can to raise whatever child we are given.

By the way, Roxanne had her baby, Gideon! A beautiful baby boy with red hair...I'm so happy things have worked out for her. She truly sounds happy, and she deserves it.