
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.
