Moving the Goal Posts

When a child is born, his parents begin to dream about his future. What will he be like, what will his interests be, will he be a good student, will he play sports or be in the science club, who will he take to the prom, what college will he go to, will he go to college at all, what career will he choose, who will he marry, what will his children look like... So many questions, but really, so many fantasies. After all, at the end of the day don't we all gaze at our babies in open-mouthed wonder, knowing that they embody unlimited potential, embody everything that is good in the world? We tremble at the privilege of watching and guiding them as they grow towards that potential. We begin to imagine the wonderful life they will lead, the things they will do. The details are fuzzy, like an out of focus photograph, but we can make out the highlights - high school, college, a career, marriage, then later grandchildren...

Having a special needs child turns all that on its head.

Instead of "what dress will she wear to the prom?" you might have "will she understand what the prom is?" Instead of "who will he marry?", you might lie awake at night asking yourself "will he ever be able to develop a significant social relationship?" Instead of "who will walk her down the aisle?" you might ask "will she ever walk?"

There are an infinite number of special needs out there, an infinite number of questions to ask. What they all have in common is the way they move the goal posts. The way they force you to reevaluate everything you took for granted, ever since you were young and playing house with your dolls. Barbie was never in a wheelchair, Ken was never autistic.

I have a special needs daughter. I am one of the lucky ones. Maya's challenges, while not easy for her or for us, are still fairly mild in the grand scheme of things, and most critically, they are thought to be surmountable. Sometimes, during the hardest times, it's difficult to remember that, but it's true. My questions are of the "when will she be able, or even want, to make friends?" variety, not "will she live to graduate high school?" or "will she ever be able to speak?" My heart breaks as I watch my daughter struggle to do the things that come so easily to others, but we have reason to hope. Reason to believe that with the right support she will be able to overcome most of her challenges and live an independent, fulfilling life. What form that life will take we can't know, and I don't really let myself dream about that right now. Twenty years from now Maya will be 24 years old. I don't know whether she will have served in the army like all of her classmates*, then followed along on the ever popular post-army round-the-world backpacking trip before returning to start college. I don't even know whether she'll have classmates who are on that path, or whether she will have remained in the smaller cocoon of special education, unable to return to the mainstream despite all of our efforts and dreams. Right now I'd settle for being able to have a real, two-way conversation with her. One she is able to sustain for more than a minute or two.

I've moved my goal posts. That's what I know how to do right now. I can't ask the questions so many others take for granted. I can only wait, and watch, and support, and love. And hope. Always hope. Hope that she can make it to the other side of the rainbow. Hope that wherever her rainbow leads her she is happy.

* Israel has a universal draft. Boys serve three years in the army, girls serve two.

This post has been submitted to Scribbit's March Write-Away contest, on the theme of "The Next Twenty Years".