Thursday, September 8, 2011

Not the dream he counted on....

I recall the early days after learning my newborn daughter, Kelly, had Down syndrome.

"Maybe she won't be affected as much as others," people would say in an attempt to comfort us.

But this was unlikely.  Down syndrome carries both a blessing and a curse in that, once you see that typical little face, that fat hand with the crease straight across it, you pretty much know what the future holds.

When Kelly was born, those in the know said things like, "Down syndrome is the Cadillac of the disabilities.  They're easy.  Everybody loves them."

And while not true of everybody exactly, a lot of people actually do. 

But when you're born looking completely normal, and grow up to have a vocabulary to match, but you happen to be, gets way more complicated.

In our country, if you have an IQ of under 70, you qualify for a lot of services.  They're not always great, and it's not easy to access them, but at least they're there.

But if you have an IQ of 75 or thereabouts, you're pretty much on your own, tossed out in the world to compete against the guys with MBAs from Harvard.

Not exactly fair.

If you have a lot of support, and people around you who recognize your real gifts and talents, you will be encouraged to move toward independence, getting and keeping a job, and making it on your own.

It comes to be a big, big dream, and you long for the day it will come true--your own apartment, your own friends, independence from those you've depended on for years.

Sure, this is also the dream pitched to the kids with Down syndrome.  Here at the Ranch we work toward independence openly and honestly, but in truth--the real deal is unlikely to be realized.

I'm thinking of this today because I have two friends who trusted in the dream, and it didn't turn out exactly the way they'd dreamed it would.

They had the house or the apartment.  They had the job in the competitive market.

But they had pitifully few people who wanted to spend any time with them.  They were scammed repeatedly, in the case of one out of his entire retirement fund.  And it happened more than once.

Any overture that seemed to offer friendship was eagerly grasped, but the savvy wasn't there to see that really, it was just somebody out to take advantage of you.

Tonight one lies in the hospital fighting for his life, and as I think back on the years I've known him, I'm sad.  He never had the acceptance he craved, the friends he so wanted.  He was our friend, and we were his.  We spent time over holidays mostly, and a few times throughout the year after church, going out to eat.  But he was mostly alone.

On paper, his life has been a grand success.  In reality, it's been a hard, lonely slog.

Yes, we do come to be thankful for the blessing of Down syndrome.  There are lots of people willing to put them down, but there are lots willing to extend them protection, too.  They are identifiable as persons in need of assistance, and I've found that, more often than not, that assistance is there when they need it.

But my heart aches for those for whom it is not.

No comments:

Post a Comment