Tuesday, October 7, 2008

No Yale, No Vassar, No grandkids

When it was first suggested that we test our son for Fragile X, my first thought was, "Do you really think he has big ears?" It was a small, silly thought, but it captured my perspective at the time, which was that I just didn't think my kid was that special. But he is.

When I got the call from our geneticist, it was a lot like all the cliche stories you read about something awful happening to someone. Everything stopped. I don't remember what the doctor and I discussed, except for that one fact. I got off the phone as quickly as I could, because I don't like to blubber in front of strangers or bosses or random acquaintances. (But it does happen sometimes, and since getting this diagnosis, it has happened a lot more.) I put on a video for my son, who I think had never seen me cry before. And then I just sat down and cried until my husband came home from work, about 30 minutes later, though it felt like an eternity.

The next few months were kind of a blur. We did what had to be done. We told our families and close friends. We kept going to work. We tried to act okay. We saved our blubbering for our meetings with a therapist who specializes in talking to parents of kids with special needs.

We are slowly, slowly, slowly coming back to something like normal, but this new normal will never be like our old normal. No professional has ever said that our son can't go to Vassar or have kids. But unless a cure is found - and that is a distinct possibility in our son's lifetime - the best case scenario involves some type of supported living situation and supported employment. Occasionally we read articles in which this scenario is painted rather rosily, but come on now. Even if you don't expect Yale or grandkids, no parent of a young child is thinking, "Gee! Someday maybe my kid can have a below-minimum-wage job and live in a group home!"

There are other rotten aspects to this particular diagnosis. Since it's genetic, and I'm a carrier of it with a relatively high repeat number, there's approximately a 50% chance that any future kids will have Fragile X Syndrome, too. And the decision has to be made fast, because I'm at risk for experiencing early menopause. There's also the issue that my father, a carrier too, is at risk of developing a tremor and dementia disorder, and just the general fact that he feels sad about having unknowingly passed this on. All of this in one phone call. Welcome to Fragile X.


Vicki Davis said...

Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Sarah said...

Thanks for visiting the blog, Vicki. I've seen this Holland thing before. What do you think of it? Apparently it was the ending monologue in a made-for-tv movie about a child with Down Syndrome. Another parent of a special needs kid, who doesn't like the Holland essay, told me that. Anyway, I'm not sure what I think of it - sometimes it feels pretty accurate, and at other times, trivializing.