A Day In The Life With Joel (Part I)

Lately, I've had a couple of conversations that have revolved around Joel and the amount of care that goes along with him. Over the years, I've had people say, "I give you so much credit for what you are doing". I'm guessing that they mean taking on a stepson who has a disability. For those that don't know Joel, I'll give you a Reader's Digest version of "his story" and then I'll give a play-by-play of what a normal day in our household involves.

Joel was born a perfectly healthy little boy. When he was ten days old, he got a fever. In response to that fever, his body began to seize up. Over the next few days, Joel was kept at the Vic Hospital where the doctors ran tests and continued to tell Mike, "We don't know what's wrong with him...we'll keep him here for observation". Meanwhile, Joel's poor little body went through seizure after seizure. On the third day, Mike was livid at the poor care Joel was receiving at the Vic. Mike made the decision to take Joel to Royal University Hospital in Saskatoon. He made the right decision. Within hours of being at RUH, the doctors were able to diagnose Joel, but the damage to his brain was already done. Joel was left with spastic quadripelgia cerebral palsy, meaning all four limbs were affected.

Here's a quick run down of how Joel is affected:
- cannot walk
- cannot support himself while sitting up (no trunk support)
- cannot roll himself over
- minimal dexterity of his hands (meaning he cannot feed or give himself a drink or hold items in his hands)
- minimal control of bowels (but we're working on it!)

Now having read that, you may be thinking, "Wow! How do you care for someone like that?". You know what? Joel on a bad day is still better off than some kids on their best day. What I mean by that is that we are so very thankful that Joel is in no pain, he does not need to be tube feed, he does not need multiple surgeries to keep his spine straight or his hips in place. Joel can communicate with a method that's more sophisticated than grunts, groans and moans. What it basically comes down to is that what Joel lacks in physical ability, he makes up for (and in some ways, surpasses) with mental ability.

I cannot imagine how frustrating it must have been for Joel when he was younger and just learning to communicate. Up until the age of four, the only words we could understand "Dada" and "Doo" (juice). At the tender age of 7, after realizing that these people that he lives with were never going to figure out what he was saying if he didn't dumb it down for them, Joel began to resort to spelling everything. And they call Joel mentally challenged? Seriously? This kid has the memory of an elephant. He never forgets a face or a name. Joel was spelling words like 'Shakespeare' when he was 8. He can spell off an entire sentence so quickly (and correctly), I have to sometimes grab a pen just to keep up with him. Imagine the disappointment for Joel when I miss a couple of letters and he is forced to start spelling the whole thing all over again!

If I was in Joel's situation, I know exactly what I would do...I would mope and whine and cry and complain and wallow in self pity. Not this kid...Joel is, without a doubt, the happiest, friendliest young man I have ever met. He is rarely seen without a smile on his face. The only times he cries is either if he is in pain or if someone has broken a promise to him (in the sense that we promised to go rent movies on Tuesday but then Daddy got called in to work so now it has to wait until Wednesday...he's so sensitive!).

I am so fortunate to have Joel in my life. He has begun to mimic my sense of humour and it is absolutely hilarious. We tease each other and try to pull each other's legs with far-fetched stories. When it is just Joel and I alone, I become one of the three stooge's and I find myself doing outrageous gags just to make him laugh. For instance, we had a helium balloon that had lost most of its air so it was hovering just above my head. I walked in to Joel's room and then pretended to bang my head on the balloon which then caused me to start swinging wildly at my unseen attacker (picture the Cowardly Lion from The Wizard of Oz). Something so simple and so stupid can have Joel laughing so hard he's literally gasping for breath. Obviously, it gets me laughing eventually and whatever kind of day I've had, all the bad, stressful stuff just seems to disappear when Joel and I are giggling together.