The Artisan Post

Could you ever face the world with one finger? Everyday?

That’s what AJ does. AJ, one of the bravest, most courageous guys I know. And he’s our boy.

You see, AJ is fully disabled from a debilitating disease called Duchenne Muscular Dystrophy. Most of his external body does not fully function anymore… he has no use of his arms, his legs, his feet, his abdomen, his neck, nothing… except for a little bit of hand use in each hand — still enough to use a PS5 game controller (good thing for some fun), and enough to operate his power wheelchair controller with one finger. One finger. That’s how he faces the world each day. That one finger displaying the brave, and yet kind and loving heart he has.

And don’t let his physical condition fool you. He’s a bright young fellow; keen, with a good sense of humour.

He needs that humour. He faces many people physically handling him — some regulars, some new, some excellent, and some…. well…. eye brow raising and eye rolling. He’ll look at me across the room in the midst of being handled by inexperienced hands and say with his eyes, “Dad, I need your help, this guy is not doing it right. But Dad, don’t help just yet because he’s trying real hard. Come back and check on me, but let’s give him a chance.” He’s very intuitive, and considerate that way too. It’s amazing what he communicates with facial expressions. (I know because I ask him later and he tells me. We have this system, you see.)

Handling can include moving him, bathing him, dressing him, shifting him, and lifting him… out of bed into his wheelchair, administering meds, feeding him, brushing his teeth, wrapping him up, and packing him up for school… all of his stuff latched on the back of his wheelchair, and sending him out the door to face the world… with one finger. One finger operating his power wheelchair, with all of his important belongings attached for the day.

That’s bravery. Facing the world with one finger. 

Facing the world of looking out for everything wheelchair accessible. Some places are great… like his school — Smith Public School in Winona ON, which, btw, he courageously attends most days (with their amazing support staff). But some places are terrible — where automatic door buttons don’t work, ramps are steep or non-existent, and entries are tight. Caution: the wheelchair world is often only for the brave at heart and for the adventurous operators and care givers. (Keep that in mind next time you come across wheelchair folk.)

And what a great wheelchair operator AJ is. He rarely hits anything (unless he wants to). I’ve always told him he’d make a great excavator operator — he has amazing finger dexterity, and hand-to-eye coordination. He operates his wheelchair through doors with 1 inch or less to spare on each side, and whips through like he’s speeding down the Waterfront Trail by Lake Ontario.

In November of 2023, he bravely joined his brother Nate in his first wedding party. Amazingly, it was just about two years earlier to the day that he had bravely faced death in the McMaster Hospital. As my wife and I went in to his room to explain to him (just 11 years old) that he may not live through the week, we cried when talking with him about it, and there he was cracking jokes on the iPad (as he couldn’t talk at the time) and consoling us!

“Maybe God will give me 7 more years” was one of the things he typed and smirked while showing us.

Interestingly enough he’s been “our boy” for 7 years. He came into our home just 7 years ago from this Feb 1st, 2024. He was a spunky young lad who could still walk, although couldn’t do stairs that well. Early on he displayed his great sense of humour, but also early on I don’t think he realized the gravity of the condition he had. He talked like he would grow up like all his new siblings (our kids) and get married, drive a car, and ride a motorbike. (Although I wouldn’t put this beyond him just yet.)

It wasn’t till the last couple years that he came to the realization he was getting worse rather than better. And many tears were shed as to the frustration around his physical deterioration. Sometimes you have to do that, just sit together with a loved one and cry, because, in the moment there is no clear way out. It is only after sitting and crying… and maybe crying some more, letting it all out, that you realize the dark clouds have lifted a bit, because this life is not all there is.

Sometimes it is with the eye of our mind that we look up, and sometimes we can physically look up. And we see Jesus. The One who went through more pain and suffering than we will ever have to endure, the One who completely understands — even more than we do — and the One also who leads the way out of the mess. He secured eternal life for us, beyond this world, through His suffering, death, and resurrection.

I have told AJ, Jesus knows what it feels like to have arms and legs that don’t work — His arms and legs were nailed to a cross thus painfully rendering them useless. He knows your pain and frustration! But through His great suffering He led the way out for any and all who would believe in Him. One day, AJ, one day, you (and me too) will RUN with perfectly good legs and arms and a fully functioning body, when Jesus makes all things new and ushers in the new heaven and new earth.

So all is not hopeless! We have this hope, as the song goes. We have this hope… that we have moved from death to life, the beginnings of it experienced now already, and are passing through this realm of tears into eternal joy.

But while we wait, and still suffer for a little while (as Jesus did too) it’s guys like AJ that inspire us. To face the world with bravery! He does it with one finger, and hope in Jesus. And we… most of us facing the world with working arms and legs… best not complain! We can all face it with boldness and hope and in Jesus, despite our circumstances!

And now, we’ll need it more than ever. A big test has just hit AJ and us. We were just notified that AJ now faces a big move… away from us his family, to Peterborough, ON. We currently live in Smithville, ON, so this move will be over 2 1/2 hours away. Why? Well, with his condition, we are maxed out in caring for him in our family home, and in Peterborough, a bed came available in a LTC home for kids, called Stewart Homes. Beds rarely come available, and if we don’t take it, another may not come free for a long time. If anything worsened in his condition and we couldn’t handle it, it would be uncertain where he would go in such a case.

It was a very difficult moment informing him of the development. More tears were shed at this time, then for a long time. ”I don’t want to go, I’ll miss you guys so much”, was his first reaction, which later settled into, “Ok, I guess I’ll go…. but, I’ll always love you.” We all can hardly handle it right now. I’m choking up even writing these things.

I really can’t say where this will go. And it hurts the heart so much. And now, our brave little wheelchair warrior, has got to go out there and face this whole new moving challenge, as he always has… with his big brave courageous heart, with one little finger.

We all have to face it trusting. Trusting that God will lead us onward and upward into the things He has in store for us.

I wonder if there are people out in Peterborough that need to meet AJ, that need to be encouraged and inspired. Lifted by a brave young fellow like this, with a big brave heart who faces the world everyday… with one finger.

AJ has been of so much encouragement and blessing to us as family. Sure, not without our squabbles… but then again, it wouldn’t be family if there weren’t squabbles. And he been a blessing to the community as well. Right now, we can hardly comprehend being without him close by. Sure we can visit back and forth and such, but right now it all seems uphill….

All I can think of is, “God thank you so much for the time we’ve had together. Would you lead us in the days of uncertainty ahead. Help us not to fear, but trust, because You are already there waiting for us to step into the good things You’ve prepared in advance for us to do. God help us.”

And if you’re out in Peterborough, and it is in God’s plan that AJ’s move takes place, you’ll have to meet him, and get to know him, and be prepared to be inspired.

AJ, one of the bravest, most courageous guys I know. And he’s our boy.