The Luck We Get

Sometimes Leo and Ellie will disappear into Ellie's room (where much of the dress-up garb is housed) for a looong time. They emerge, and something like this is the result (styling by Ellie).

"Some luck lies in not getting what you thought you wanted but getting what you have, which once you have got it you may be smart enough to see is what you would have wanted had you known."--Garrison Keillor, Lake Wobegon Days

When I was pregnant with Leo, I couldn't shake the feeling that something wasn't "right" with the pregnancy. It was just three years after the death of my beloved mother, the person who was my touchstone, to whom I looked to for virtually everything. To say that my faith in the universe was shaken would be an understatement. If she could up and die? Then why couldn't there be something wrong with the baby? Anything could happen. Anything was possible. (In my mind, at that point, the "Anything" would inevitably be bad.)

I tried to reassure myself about "the baby." I tried to tell myself that Everything Was Going to Be Fine. After a lot of soul searching, we declined prenatal testing. But then some suspicious markers showed up at the 20-week ultrasound and I was terrified. Of course, I remember thinking, as I stared up at the ceiling in the tiny exam room at the maternal fetal medicine center at Mt. Sinai Hospital. Of course there is something wrong with the baby.

But then then the doctor did a bit more investigating and another doctor peered at the screen. There was blood work. Actually, everything looked fine. Screen negative: Your baby does not have down syndrome.

Bullet: Dodged. Relief.
***
About a week before my due date, Erin and I both read an article in a magazine that mentioned a baby with Down syndrome. It was quite a story, about a couple whose baby had died when the father had inadvertently left him in the car. They went on to have another child--who was born with Down syndrome.

Can you imagine? I asked Erin. Having a baby die, only to have another who is born with Down syndrome? I uttered  "Down syndrome" with such disgust, as if the word itself was contagious and that saying it alone would reach in and add a chromosome to our unborn baby.

"Oh I don't know," Erin replied. (Even back then she was a more highly evolved person than I am.) "All the people I've met with Down syndrome seem pretty happy. It doesn't seem like the end of the world to me. Not by a long shot. I think I can think of a lot worse things happening."

I shook my head in disgust and disagreement. Oh no, I remember thinking. That would be the end of my world, for sure.

But, you know how it goes: "People make plans, God laughs."
***

I named this blog in a rush one day--typing one of the the first things that came to my mind when I thought about what Down syndrome meant to me and before I realized I might actually write here and people might someday, you know, read what I wrote.

In reality, I don't exactly believe that everything happens for a reason. I actually think that life is really quite random.  The whole, "Special babies for special parents," (we heard that one when Leo was born, along with another favorite "God doesn't give you what you can't handle"--to which my favorite refrain is: If that's true then I wish he didn't think I could handle so much!) while being well-intentioned, is to me, merely a good wish. Down syndrome is random. Science has proven it. There is no reason why it happens or why one baby has perfect chromosomes and another has an extra one, or one missing. I've said it before and I'll say it again. If I've learned anything after three pregnancies and four babies and births? It's a miracle any of us are here at all.

You think you have things all figured out, you think you have a plan and then...Down syndrome. Or, I don't know...twins. "People make plans, God laughs," will truly always be one of my favorite quotes.  The lesson in all of this, to me, is not so much that what happens, happens for a reason, but rather to try and learn something from what did happen. To try and make the best of things, no matter how hard or scary that might be. Leo having Down syndrome? If that's not almost the complete opposite of what I thought I wanted, then I don't know what is.

But, look. Here we are. Having a pretty good time if I do say so. And here's Leo, enjoying his life as usual. He almost always knows how to have fun.

January, 2012

And we are so very lucky to have him.

Dirty Little Secrets

This morning at daycare drop I was uncharacteristically not in a hurry and ended up chatting with another mom. Her son has autism and used to attend the daycare. This mom is always very friendly with me-I guess because we have that unspoken "there's something wrong with my kid" bond. Her son is three now (her younger son, age one is still in the infant room). I asked her how her older son was doing--he's in a self-contained classroom in the district, at the school Leo would attend if I hadn't created a bit of a stink and insisted he go to the Down syndrome concentrated school out of district.

She said he was doing ok. She's not thrilled with the program but she's trying to be more proactive about getting the things he needs. It's a struggle to get things done and also "be nice." And then she started on a whole other topic:

'We don't really have playdates, she said. "I feel bad. I know that other kids get asked to come over and play and we don't. I feel sort of like we're a dirty little secret. No one wants us to come over or invite us to their house or invite us to birthday parties."

Hmm. I never really thought about this. Ellie is still too young for playdates I guess. The ones we do have usually feel like they're more for me, where the kids and I hang out with friends who happen to have kids. But it's true if I really think about it, Leo doesn't get asked on a lot of playdates. There seem to be enough birthday parties but now that she mentioned it, he's only been invited to a handful of parties I can recall, in his whole life, that were not parties for kids with Down syndrome.

I never really considered the lack of playdates. Since I work full-time, the weekends are really all we have. I feel like the kids are social enough during the week-isn't every day for them kind of one big playdate?

But this did get me thinking. Is Leo excluded by his typical peers? Since he's my first, I don't have much to compare it to.

And then she asked me if we'd be interested in getting together some time. And I have to be honest, my first reaction was No. I realize this sounds bad. It's completely discrimanatory. But honestly? Leo spends enough time with non-typical kids. I really have no interest in getting together just because we have that lovely aforementioned bond.

And then this mom asked me if she could "ask me something personal."

I know from experience that this kind of lead up is either a) related to prenatal testing or b) how I got pregnant.

In this case it ended up being Option A. She wanted to know if I knew about the DS in advance.

I told her no and she immediately assumed I had no prenatal testing because you know the prenatal tests always catch everything (insert sarcastic tone here).

I quickly corrected her though. I had the Integrated Test, now I think known as the nuchal fold screening. It did come back slightly elevated for my age (1:350) but according to my OB, not high enough to technically warrant an amnio (in other words, the risk of amnio complications was higher than the odds that the baby had DS). The doctor went on to tell me this result translated into a one-tenth of one percent chance that the baby had DS. And also there was the "screen negative" result of my anatomy ultrasound, meaning the baby showed no markers and therefore tested negative for having DS, at least on-screen.

In other news: Don't ever ask me to trust statistics again.

Of course I know now that the only really fool-proof test is the amnio. But honestly, I don't think I really wanted to know with Leo. Neither did Erin. Not that I thought there was even a remote possibility that he actually had Down syndrome (I guess if I thought he had I would have gone ahead with the amnio).

"That must have been so hard, finding out at birth," she said.

I shrugged my shoulders. "Oh yeah, it was very hard, but in some ways now I think maybe it was easier than what you had to go through, thinking everything was OK and then...."

She nodded. "At first they thought it was hearing loss because he wouldn't respond to his name. They said it could also be autism. I prayed that I'd just have to learn sign language and that would be it."

We wrapped up the conversation. She didn't have a pen or paper to write down contact information. Would I go to her house if she actually ends up inviting us? Oh, probably.

Sometimes I think I'm really naive. Maybe Leo is being excluded. I feel better just not thinking about it. Our weekends are always busy, playdates or not.

Default Setting

I lay awake last night wishing I had taken my last post down. I'm not going to, but I'm going to take a little break from the Leo harping. I just have to.

Last night Erin had the kids while I went to a parent volunteer group meeting (we mostly work on fund raising at Leo's school). According to Erin, Leo was an angel and helped her with Ellie, getting her diaper and helping dress her. He even took his medicine without a fuss (disguised in yogurt smoothie, but still).

The thing about Leo (and this never ceases to amaze me) is his default setting is Good Mood. Seriously. He is just for the most part, pretty happy. Not to further all those "they're such happy children" notions but really, if given the right set of circumstances, Leo is more than content. And I'm not talking ice cream sundaes and no school. I'm talking a bowl of oatmeal and his little sister sitting next to him. I'm talking a basketball with hardly any air in it and a hoop to (try) and throw that flat ball into. I'm talking a beloved stuffed buffalo in his lap, a snack bag of Veggy Booty and a window rolled down for a car ride. Give him any of these scenarios and Leo will be downright celebratory. And I will go ahead and say it: I don't think you can say that about most typical children.

This morning on the drive to school, Leo was calling to me. I looked in the rear view mirror to see what the fuss was about. He simply wanted to show me that he and Ellie were holding hands. Ellie thought it was fun too as she was all smiles. Then I asked Leo his most loved question: Leo, who's your favorite person? The answer is always the same: Ellie!

At the meeting I attended last night, one of the coordinators for the school's early intervention program brought up a dilemma she is dealing with and asked for help. Apparently this year they have one baby starting E.I. Yup, that's it. One. I don't know what the usual number is but I got the feeling it was a lot more. The coordinator went on to say she's going to have to think about changing her "model." I think in English that means think about how to attract kids that don't just have Down syndrome. Leo's school is about 95 percent children with Down syndrome-the other five percent have some other syndromes or issues. I don't know if enrollment in the school is down but it's definitely not a large school, and children are bussed from as far as over an hour away. The mom sitting next to me happens to be a nurse at the local hospital. She chimed in with the fact that in the last year one baby has been born with Down syndrome at her hospital. Apparently this is also a drop from the usual number.

You don't have to be a genius (sorry) to realize there is something going on here. I'm not going to get into the whole issue of prenatal testing here because that's not what this is about. Also, it would make me a hypocrite. But sitting in that room last night, a room full of moms of children with Down syndrome, I was struck. I know we all have different stories of how we came to that room. Some of us knew long before they handed us our little person, swaddled like a burrito, what we were getting ourselves into. Others (like me) were blindsided. But still, here we are. And it's hard to believe that there may come a time in the not too distant future (if it's not already here) that there will be far fewer of these children that we are all working so hard for.

One of the moms chimed in: "I was watching my daughter with her P.T. the other day and I just looked at her therapist and said "Who wouldn't want a child like this?"

Well, I can think of a lot of people, actually. But I also know exactly what she means.

Nice Story

Regardless of where your beliefs fall, I think this is a nice story.

New York Times Piece

This is an interesting piece from the New York Times. Even more interesting were the responses, mostly from parents but also from siblings of people with Down syndrome. Warning, have your tissues handy. Very moving, sad, bittersweet, and simply sweet. I find myself both desperately curious to hear from siblings of people with Ds but also terrified. I only want to hear the stories of "my brother made me a better person, he is the glue that holds our family together..." I don't want to hear the bad stuff, but I know it's there.

But there's good stuff too. Trust me.

Why I Don’t Say I’m Sure Everything Will Be Fine

A friend of mine is pregnant with twins and was last week trying to decide whether to get an amnio. Her ten-month-old daughter actually has a chromosomal anomaly (not DS) that was diagnosed prenatally via amnio, so she is well aware that bad stuff actually does happen to real people. We chatted via email about the decision—she knows I’ve been through it all (a cvs when I was pregnant with Ellie and when that didn’t work, an amnio). When she finally wrote to tell me that she had decided to go ahead with the amnio, I wished her the best and told her at least she knew what to expect (since she’d had one before). I reminded her that it had been my experience that the build-up of all those tests is way worse than the actual procedure.

But I did not say not to worry. And I did not say that I was sure everything would be fine. Because guess what folks? It might not be. Sure, the odds are that it will be. And I hate to sound like an incredibly negative “Debbie Downer,” but bad stuff does happen. Until it happens to you, I think it’s easy to think it only happens to other people. But someone has to be that one half of one percent (yes, that would be me).

When you meet with the genetic counselor or chat with your OB about statistics, the so-called “age related risk” associated with certain chromosomal defects, the odds are very small that something will be wrong. I was 30 when I got pregnant with Leo. After the nuchal scan my odds jumped from something like 1:650 to 1:350. I was just above the cut-off where most OBs recommend amnios (when the risk of a complication from the amnio itself is higher than the probability that there is something “wrong” with the baby). I will never forgetting standing in my bedroom as I took the call from my OB where she attempted to explain my results (I smile now as I recall trying to wrap my brain around all those numbers—now I feel fairly confident that I could probably teaching a basic course in genetics and prenatal testing). Less than one percent chance of Down syndrome? “Screen negative”? Sounded good to me.

I didn’t have an amnio with Leo. And that led to one of the biggest surprises in my life. I wouldn’t change a thing about how it all happened. Before he was born, I told myself that everything would be ok. That my baby would be healthy and “perfect.” For a long time after he was born, things were not ok. And for a long time I didn’t think things would ever be ok again. And then slowly, there was a shift. I can’t put my finger on when it happened but there it is. I think very differently about life now. There are no guarantees. I now know that someone has to be that one percent. There’s an old Yiddish proverb and it goes like this: People make plans; god laughs. It could be you. And it could not be you. if it is you, you might find out that it’s not the end of the world that you thought it would be.

Edited to add: Not to say that having an amnio come out negative for anomolies guarantees you a "perfect" kid. Plenty of disorders are not chromosomal. And your chromosomally perfect kid could (god forbid) get hit by a bus and be brain damaged (sorry but it's true). You just don't know. That's life and that's being a parent. Taking on all the risks and joy that it entails.