Wednesday, September 05, 2007

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...

Friday, August 31, 2007

Fundraiser a success!

We had our fundraiser for Down Syndrome Research and Treatment Foundation ( 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: 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.

Saturday, August 11, 2007

Trying Too Hard

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.

Monday, August 06, 2007

I'm back!

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.

Saturday, June 02, 2007

So Sorry...

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 ( 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.

Monday, April 09, 2007

Maybe Paul McCartney??

I got some, maybe, good news tonight. Last fall, we did a fundraiser for Down syndrome research here in Los Angeles ( 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.

Saturday, April 07, 2007

Long Time Since Posting

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...