Wonderful Things About Tess

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

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...

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

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?

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

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.