If you follow our Facebook page, and if you're reading this, you probably do, then you likely have an idea of where I'm going with this post just based off the title. Yes, I'm tackling the hellish process that starts with the initial concern to the final diagnosis. We haven't gotten to the end of the journey yet, but I have a pretty good idea of where its headed.
There's a poem or short story entitled "Welcome to Holland" that keeps making its way back to me. If you've had a preemie or something unexpected happen, you've likely read it too. It compares an unexpected event to boarding a plane to a vacation in one country, only to end up in Holland instead. Sure its not where you thought you were going, but you can enjoy Holland anyways.
I hate that story.
The important thing its missing is that while the destinations are totally different (what you expected and what you ended up with) and can be great, the author fails to mention that the trip to Holland is full of turbulence and the plane is lacking seat belts and sick bags.
I like to think the ridiculously lengthy process is like a car ride instead- mainly because planes don't really fit the metaphor I'm going for here. But its no ordinary car ride. Its like getting in and knowing you're going to be in an accident (because no one wants to invision a plane crash). You don't know when it'll happen, where it'll happen, or how badly you and your fellow passengers will be injured, you just know its going to end badly.
When we first strarted noticing something was a little off with Caiden, we prepared. We went over all the maps we could lay our hands on, buckled our seat belts and obeyed the speed limits. And yet, we still managed to hit all the potholes, miss turns, and sit through green lights. When we finally got to the diagnosis, we crashed into it and walked away with a case of whiplash.
After Monday's appointment with the diagnostician (read the full update here), I feel like we're back in that car, barreling down the road with our eyes closed bumping into everything in our path. Were going to crash into the test results, and this time we might not walk away from it.
I'm quite honestly petrified of what his labs will tell us. I'm also scared they won't be able to tell us anything and we'll be back to where we started only having to try again. We can handle autism. I don't know if we can handle some of the other things they're testing for.
I thought that getting Caiden's ASD diagnosis would be the worst part of this whole process (remember its taken is a year to get to this point), but while the diagnosis part definitely sucks - as important as having answers are, its definitely the waiting. By the time we got his official diagnosis, we already knew that's what it was and were actively addressing the issue. The wait had given us enough time to confirm our own ideas and get the ball rolling on managing it.
This time, we don't have that luxury. We're left with no leads, no good ideas, nothing to fill up our spare time and no direction to head in. The stress seeps into your bones and everyday its there reminding you, one of these days, they're going to call, and you're going to crash.
But like an idiot, you keep getting back into that damn car, because if you don't, you'll never know where the road finally ends and what the diagnosis is. Its not strength that gets you through the day or causes your knuckles to turn white as you grip the wheel, because really, you do what you have to as a parent no matter what. If it were your child, you wouldn't give up either.
What keeps you going is the chance that maybe you won't crash when you stop. Maybe the answers won't be as bad as you fear. Its the hope that maybe it'll be okay and the constant pain in your heart will eventually subside.
Because when it's your kid, you don the armor and go to war, even when you're already broken.