31 for 21, Day 24: The News is Good

Welp. Clearly I've failed at ye olde "31 for 21" this year. It was a nice thought, but it was not to be. There was a time when I could blog every day and this is just NOT that time.

But I've enjoyed the abundance of Down syndrome articles friends have shared in the last few weeks (courtesy of Down syndrome Awareness Month). There's so much good information now. So much positivity and hope. So much that wasn't there on that insufferably hot, humid day more than eleven years ago in the delivery room, when a doctor I'd never met gruffly muttered, "Well, we think he has Down syndrome."

This week, some of that good information came in the form of a podcast. I've started listening to them again, after an unintentional hiatus. I used to enjoy them when I was commuting (a hot coffee, a seat by a steamy window, a voice whispering eloquent writing or dialogue into your ear? THE BEST). Now my commute is two minutes long, the time it takes for me to drive home from dropping Ellie at school, walk to the kitchen table and pull out my laptop. So I've had to get a little more creative about finding the time to listen.

But check this one out. Writer and comedian Bethany Van Delft says, of her realization about her early days of having a baby with Down syndrome:

"Once I stopped fearing...I realized all moms cry a lot. All moms doubt their ability to raise this child. All moms worry about the future. I used to wish I could go back in time and get that test after all, but now I wish I could could go back in time to allow myself to feel the joy that a new mother feels, because that's what I was."


I've started listening to podcasts while running (the only time in my life when things are "quiet"). I turn the volume WAY up so I can't hear my pathetic gasps for air. Recommend!

Then came this story, about a new program in which young people with Down syndrome write "Congratulation" letters to new parents of babies with Down syndrome. Now, "Congratulations!" is not a word I remember hearing much (ever?) at the hospital when Leo was born. Luckily, I think the world has changed a bit since then, but this campaign is still amazing and much-needed. An excerpt from my favorite letter:

"PS. This baby is going to be the best thing that ever happens to you."


Leo, 18 months. 

Yes.

Nine.

Nine years later and Leo's birthday still chokes me up a little, in a way that the others do not.



What strikes me is how much can happen in nine years. How much can change. How much a boy can change, yes, of course.




But also, how much I have changed.

Nine years ago today I became a mom for the first time.



I went to school for eighteen years but this birthday boy is the best teacher I ever had.











Nine years later, it's wonderful to celebrate this day with rainbow saturn cakes (Leo's request) and super hero masks.



And the only tears are happy ones.

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.