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On my mind

Posted Jul 06 2010 12:00am

In a few short hours (about four, more specifically), my baby will turn two. His birthday has obviously been approaching for weeks, and I've been just fine and dandy with it. For the last few days I've been drafting in my head what I'd post here to commemorate his second birthday - something positive and upbeat, something that conveyed how I adore him and how much his very presence has changed our family and opened my heart. And all that is true.

And yet.

As the day wore on today, as I herded kids and did chores and ran to the store to buy one last birthday gift for Finn, I felt myself feeling more and more out of sorts. Until finally around dinner time, the tears started, which I've continued to brush away on and off for the last few hours.

I feel sad, and I'm not sure exactly why. I don't think there's a simple answer. It's far more complicated than the usual bitter-sweet melancholy I feel with the turning over of years with each of my other kids. It's different with Finn. It's all so very different. And I guess that's the crux of it.

I think back to those early days and weeks, and how scared I was. What did the future hold for this tiny baby who came crashing into our family with his extra chromosomes, with his extra issues? How bad would it be, how hard would it be - for him, for all of us?

I even went through a fairly prolonged period of holding out hope that he would only be mildly affected by Down syndrome. Mildly affected. I was fixated on that notion for a while, I'm ashamed to admit now. I think it all started with him rolling over for the first time at three and a half weeks old - three and a half weeks! And it wasn't just a fluke, because he kept on doing it. So I grabbed onto that, hoping that it was a sign of things to come - that he would reach all of his milestones on time, or even ahead of schedule, that he would be the superstar kid who made it into the medical texts by having the extra chromos but none of the delays and issues typically associated with those extra chromos. I guess it was a coping mechanism - I created this fantasy as a means of coming to terms that my baby was different, defective in the eyes of the world.

But over time I figured out that his rolling over at three and a half weeks had no bearing at all on anything - except that he could roll over at three and a half weeks.

And over time, I adjusted, I coped. I accepted. I got to a point of knowing in my heart of hearts that I wouldn't change anything about him, not even that he has Down syndrome. I have come to believe that in fully loving him and accepting him just as he is, without reservation or qualification, means always having high hopes for him, but also accepting that he will have limitations, that there will be things he will never master - but that it's still possible to see the value and beauty of his existence.

So why am I feeling so sad and down on the eve of his birthday?

The delays have become more numerous and more apparent the older he's gotten. It's no longer abstract, it's reality. At two years old (okay, three and a half hours shy of two years old), he doesn't walk, he doesn't talk, and he doesn't eat table food. I know those things will come in due time. When is anyone's guess. I'm okay with it for the most part. I guess what's painful is just that every achievement is so hard won. There is so, so much patience required in parenting a child with developmental delays. And patience is most definitely not one of my strengths, but interestingly, it's not all that hard to be patient with Finn. But I wonder how patient the world will be with him.

And now, in writing it all out, I think I've gotten to the heart of it: it's still a hard world to raise a kid like Finn in. People like Finn are still viewed largely as less than. They are still marginalized. Prejudices and misconceptions about people with Down syndrome still abound. People still throw around words like "retard." I would venture a guess that a good deal of my own friends are still secretly glad that it happened to me and not them. It's still something people don't want to happen in their family.

I've changed. I believe I've become a more compassionate person thanks to the addition of Finn to our family. I believe my mind and heart have been opened to the plethora of differences in all people. At the same time, I think I've become more hard-hearted to small-mindedness. I've donned a new hat among the many I was already wearing: the hat of Advocate. Which means I have to speak up on behalf of my son and all people like him, even when it's painfully uncomfortable. The knot of friends who comprise my "inner circle" has shrunk, I'm sure because of changes I've undergone.

Sometimes I still feel scared, like I did back in the early days and weeks. The future is a huge question mark. It's not Finn I worry about so much. It's how kind or cruel will the world be to him?

So I rocked him tonight in the dark of his room for a long time, thinking "just a little longer . . ." holding him tight, and wishing I could protect him always.
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