Tuesday, December 16, 2014

Two Years and Rising

When Jude was born two years ago, I couldn't imagine NOT thinking about Down syndrome. From the moment the Dr. uttered over the phone "The fetus has Trisomy 21" my whole world seemed to stop and switch rotation. In those early months, it was always Down syndrome (don't believe me? Go look at those early posts). Don't get me wrong, I don't think it was a bad thing at all. I learned a great deal in those early days about disability rights, and I wouldn't give away that experience for anything.

I kept insisting that our world hadn't changed that much but the reality is that of course our world had changed. We were not the same people we had been even a year before. I never considered myself Abliest but I was in so many ways. The growth and the pain of that growth was hard but so important. How I saw the world went through a radical shift, and I became a better advocate for my children because the reality was simply that I already two children with a disability. I had just never acknowledged it, or rather I had acknowledged/accepted them for who they were but hadn't push that thought process to embrace a bigger arc of people. Jude's birth propelled me into that world, and for that I will be ever thankful. I've meet some amazing advocates, and count myself lucky to be an ally.

But still in the day to day aspect of our life, the change was smaller. The change was simply the way a family dynamic shifts with each new addition. Jude's integration into our family was not always smooth but it was mostly joyous. Now she is just another beastie which is quite something. I don't think any of us even think twice about the Down syndrome. It's not that we don't think about her having Down syndrome. We do. We know. It's just not a big deal anymore, or more it's just common place. She just is. She's here. She's loved. She's a part of the tapestry so smartly woven into the fabric that you'd have to flip things around to find where her thread started. Only then could you see the bumps, the missteps we made, the things we learned, the ways we changed. But from the outside, it's just this toddler. No longer a baby.

In the last year, Jude transformed from our sweet baby to a clever, mischievous sweet toddler. She's a whirlwind of energy that touches everything and everyone in the house. She is fierce and independent as she learns to do things on her own. She scorns our help, and figures out how to do things her way. She has become cautious about her smile, and doesn't offer it with the same abandon she did last year. Her smile is now a gift not to be won but to handed over at her will. But she is not afraid of the world around her. She walks as if she owns a room, shunning those who would block her or restrict her purpose. She is a queen, and it's clear in the way she holds her head.

For me these days of getting to know Jude do negate the kind of thinking about Down syndrome that soaked through the days when she was younger. Now it is simply an aspect of her. I no longer fear the future the way I used to when she a baby in my arms. Or rather I fear for her future the way I do with all my children. There is no hidden corners of wondering if she will not talk, not run, not be independent. Instead, I am leaning into the days of shaping as she grows into ever more being. The future is murky as those magic 8 balls from my childhood would tell me. No surprise there.

This everyday texture to thinking about Down syndrome--to living with Jude who has Down syndrome--has changed they way I write as well. I am not sure what I have to offer. I suspect my greatest use is to offer up the voices of those with disabilities. I am not a good blog writer, I suspect. I don't research enough nor do I have that knack for pulling information together in an interesting way. There are others who are much better than I at this kind of writing. And sometimes, I worry that I will tell too much of Jude's story. That in the end, I will have paved too much of her road. Perhaps, I think, it is best to let that murky future hidden in the inky depths of a Magic 8 ball reveal itself to who it will. 

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