Watching Daniel Bloom

How an MRI showed me how our world is shrinking

Posted on: May 6, 2011

Today, we finally had Daniel’s MRI at Sick Kids. This doesn’t sound like a big deal but when you consider that it involves 3 different sedatives, ending with a general anesthetic (liquid sedative followed by gas followed by general anesthetic by IV) – well – as a parent, it can be a bit scary. It all went smoothly though (even if he was a *bit* crabby, weird and unsteady)…and now we wait for the results.

This marked another small milestone in our long stream of doctors-procedures- hospitals-and-testing…all in an effort to reach a “diagnosis”.  The funny thing is, I think I’ve honestly passed the point of worrying about getting a formal “diagnosis”, and I’m far more concerned about on figuring out a plan of action.  As a result, another test (that could confirm or deny a number of things), is not even really scary anymore.  A few months ago, the thought of just walking into Sick Kids Hospital freaked me out  – it’s now just another part of the journey, and I’m not going to give it more credit than it’s due.

But that doesn’t mean that our appointment today was stress-free. It also doesn’t mean that I didn’t leave knowing a bit more about Daniel than when we arrived.

Sitting in the waiting room, there was another little boy about 1/2 foot shorter than Daniel and clearly a lot younger. I listened while his parents explained what was about to happen, making the whole thing sound like an adventure. It hit me like a ton of bricks – I would never bother to try to explain all that to Daniel, because he simply wouldn’t understand. He certainly wouldn’t respond like this little boy, probably a year younger than Daniel, did. And it was like a kick in the gut – a reality check that I didn’t want to face – a realization about just how far behind he’s fallen.

And I thought about it some more, and I realized that I’ve been protecting us – all of us – from seeing how big that gap has grown. When I talk about  “setting him up for success” (as I refer to it) I’m actually protecting myself (and my DH) from seeing the painful reality of it all. And in the process, I’ve been slowly shrinking our world.

The truth is that Daniel copes quite well in his structured, well-defined routine (even if his speech is very limited). But if you throw a curveball his way, all H-E-double-L breaks loose. So… since life is relatively ‘normal’  as long as you just go from our house to the coffee shop to daycare, or from the park to granny’s house (and occasionally the grocery store),  there’s a good reason to stick to those patterns, maintain a  predicable, manageable experience, and effectively avoid too much stress for all involved.

The problem is – we can’t live in this tightly-defined world forever. And it’s starting to take a toll on all of us. I don’t have the answers, but I realized today that I need to start finding ways to expand our world, not only for A, C, and me, but for Daniel too.

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