Every so often, I run across a post or email, singing the praises of “Welcome to Holland”, or some other similiarly veined essay about life with a special needs child. Inevitably, it will have some line about “When we got the diagnosis…”. And there, I lose my ability to relate.
Oh, sure, I can relate to some parts. Little things like finding out there’s something wrong with your child. That their future isn’t what you thought it would be. But no where will you find an essay called “Welcome to LimboLand” which waxes poetically about having a child with special needs but no label to describe it. No one ever writes about that one defining moment when the doctor said “We may never know what your child has.” No one ever talks about going from doctor to doctor to specialist, spending hours online searching for that elusive label.
No, most of these essays are about coming to terms with the diagnosis of X or Y or A, and how it may not be what you expected, but it could be something more. You may have wanted to go to Italy, but hey! There are good things about Holland! I’m sure they are. But we didn’t get to Italy or Holland. No, we’re in limbo, still waiting to be told what our destination is. At least in Holland, you know where you’re at and there’s a map for it. There’s a bit of comfort that comes with a label. There are expectations and possibilities and guides for the future.
Without a label, there’s no map, no guide, no destination. Instead, you’re a pioneer, naming things along the way, hoping for the best, prepared for the worst, and yet still caught off-guards at times. There’s no support group but the one you make for yourself. And there are questions. Lots of questions. Questions and implications, as if you haven’t spent the past months and years trying to find a label, a diagnosis. There’s this belief, misguided as it is, that if you go to a doctor, they will give you an answer. Guess what? They don’t always have an answer. It doesn’t mean they’re a bad doctor, or we’re bad parents who aren’t trying hard enough. It just means there isn’t an answer. No trip to Holland, destination unknown.
When your destination is unknown, you have two basic choices – go crazy or enjoy the ride. Me? I choose the enjoy the ride. We make stops here and there, collect something once in a while, but otherwise, we’re driving without a map or an end to the route. If we see something that interests us, we check it out. Otherwise, we roll along merrily. We’ve check out Holland, it wasn’t for us. I check out Crazymakingland as well, it wasn’t that great either. We peeked at a few more destinations, they weren’t meant to be. So we wander. We wonder while we wander, but always enjoy life.
They say getting there is half the fun. I’m not so sure about that. But I also know that making the best of things really is the way to go here. So forget Holland. We’re making the best of LimboLand.