Disability was introduced into my life in a heartbeat—one minute my newborn son had just been pulled from my abdomen, and the next minute, as I lay cut wide open on an operating table, a neonatologist was abruptly informing me that she suspected my baby boy had Down syndrome.
But it’s kind of appropriate how it happened, really, because finding out my son has a developmental disability was like being abruptly cut open. Up to that moment, I had lived a very guarded existence. I didn’t share my emotions with too many people. I had friends and loved ones, but it took a long time for me to open myself to them. And even when I did, there were always big pieces I held back. I suppose I didn’t really have faith in acceptance; there was always a part of me that was waiting to be hurt. (The reasons for which could fill up another blog post…or twenty.)
But when Sam was born and I was told of the doctor’s suspicions, I felt as if my insides had been ripped right open and spread out for everyone to see. And quite literally, they were, given that I had a C-section and was told before I had been sewn up. But it was more than that—being given shocking news in an operating room full of strangers (except for my husband) and then receiving countless looks of pity from nurses, social workers, aides, attendants, and anyone else who came into my hospital room over the next few days was enough to make me feel as if my entire quiet, private life was on display.
Truly, I was more confused than upset upon hearing of Sam’s diagnosis. More than anything, I was just stunned, as I hadn’t expected it. I always knew it was a possibility (I was already 38 years old, after all), but I still didn’t expect it. So many of my emotions during those first couple of weeks dealt with confusion—figuring out what Down syndrome meant and what it might look like for Sam, for us, and for his older brother.
There was a little grief, but not in the way you might expect. I never had that sense of “mourning the child I didn’t have” that so many people talk about. Because I never really had any preconceived notions about what Sam would be like—I had never imagined anything in particular that his life would hold, other than that I wanted him to be happy. So he didn’t come out any different than I was expecting, because I’d expected nothing in particular.
My grief stemmed from the sort of world I knew he would face. The fact that Sam had Down syndrome didn’t bother me for me—it bothered me for him. I cuddled him and looked at his sweet, beautiful face with his tiny nose, his little almond-shaped eyes, and his perfect little mouth, and I thought about the cruelty in the world and the fact that he had been born pretty much with a big, fat, red target on him. And that killed me. It still kills me sometimes. But we’ve had two and a half years of people largely being unfailingly wonderful to Sam, so it kills me a little less than it used to. I know he’ll face cruelty someday, but hopefully it won’t be as much as I envisioned in those first few weeks with my sweet newborn baby.
But I think I really came to terms with Sam’s disability when I realized that it had changed my life for the better. That feeling of having my insides ripped open for everyone to see? I realized that they were never going to heal up with some neat little scar. Two and a half years later, and I still feel wide open and exposed. But I’ve realized that it’s a good thing. It’s good that I’m more open. It’s healthy. I cry more, sure. But I also laugh more, smile more, and feel more. And that wouldn’t have happened if my ordered little world hadn’t been abruptly torn open.
Sam himself is a joy—a complete joy. He is sweet and agreeable, but also feisty and opinionated. He has personality to spare and charms people instantly, and he demonstrates his wily smarts every day. So Sam, by virtue of being him—all discussion of disability aside—has made my life better. Children have a way of doing that! But so has his disability improved my life. In addition to feeling things more deeply and sharing more fully, I have a purpose in my life that I didn’t have before. I have a strong resolve to do everything I can to make the playing field more level for Sam and his chromosomally enhanced pals—and for all people with disabilities, really. It’s the absolute least I can do for him, and it has given me a sense of direction that I didn’t have before…and a new perspective on people. I was never cruel or dismissive to anyone with a disability, but I make it a point to get to know them in a way I didn’t before I had Sam. And my life is greatly enriched because of it—there are some pretty damn awesome people with disabilities out there!
So how did I come to terms with disability in my life? Simply by recognizing that I had a good life before, but I have an even better, richer, more beautiful life now that it has a new facet that I didn’t expect.