Sunday, May 15, 2016

my brother's blades

Dear Family and Friends,

It took me nineteen years to find someone who loves ice skating more than I do. And of all people, it’s someone who will never wear ice skates.

Let me back up a little.

I’m the third of nine children. Each of us is so different and unique: I couldn’t imagine life with any one missing.

All of us have left home now, except for my littlest brother, John Paul. He probably never will. He can’t walk, he can’t hear very well, he can’t speak like you and I do. He wasn’t ever supposed to live more than a few days. Down syndrome, Autism, Cerebral Palsy, Blindness – these are just some of the conditions he lives with.

I remember asking my mom and dad many times if they thought he even understood anything that we told him. Did it matter if I said goodbye or hello to him? Could he hear at all? Both my mom and dad said they didn’t know, but that they thought we should always speak to him like anyone else, in case he really did understand.

It was ice skating that did the trick.

My mom had often suggested taking little John Paul, in his wheelchair, to the hockey rink.

tired little hockey players: my older brothers Brian on the left, Dan on the right, and yours truly in the middle
I grew up on skates, almost. The Saint Louis Blues practice rink was literally down the street from my house. Then I played pond hockey for five years straight, all winter long, every day the weather permitted. I’m not a grisly, tooth-missing hockey monster, but I love to play hockey and I love to skate.

I was hesitant about taking John Paul. Who could tell if he would like it, or if it would even work at all? Finally on one visit home from my studies in Rome I took my mom up on her suggestion. Again, uncertain if he would even understand, I asked my mom if I should tell John Paul what we were about to do. "Sure you should,” she said.

So I did. “John Paul, I’m taking you ice skating,” I said as we set about lifting him from his bed into his wheelchair.

His brow furrowed. Hmm. I hadn’t seen him react like that before to anything that I’d ever said. It was just the kind of thing I’d do if someone had told me they were going to take me to do something I’d never done before. “Kevin, I’m taking you sky diving”. “You’re what?”

It was simple, I would take him to the rink, put on my skates, and push him around during a public skating session.  My mom had checked with the rink before and they even had a special ramp for me to push him onto the ice with, wheelchair and all.

At 17, John was skinny, but very tall, so it would take herculean efforts to maneuver him into my dad’s old mobility van. Instead I just pushed him in his wheelchair the quarter mile or so from my house to the rink. We got a lot of stares as we crossed a busy five-lane boulevard. And even more stares came as I sat down on the bench and put on my skates, John Paul rocking rhythmically beside me in his chair, like he always does.
starting to skate
As soon as I pushed him onto the ice, I could feel his body tense with uncertainty. He had never felt anything like this before.

We started slow. With the brakes on his wheelchair locked, he slid smoothly across the ice.

People gawked at us as we slid past. Little children stared like they were seeing an apparition. One little boy stared so long he forgot where he was going and crashed into one of the side walls, picking himself up quickly.
It was after maybe the second time around that John Paul started laughing, his deep chuckles resounding off the ice and boards. He was loving it.

When we’d go down the straightaways he’d rock quickly, almost as if he was riding a horse and willing it to go faster. Then when we’d hit a turn he’d squeal with delight and clap his hands.

After a few laps, I tried something new. When we’d come to a turn, I’d do a loop de loop. At first the tension returned to John Paul’s body, then he made clear that he really really liked the loop de loops. Every straight away he’d start hollering and building up his excitement until we hit the turn and did one, two, or three loop de loops, and he would squeal with glee. My dad even videotaped us a bit, and you can hear his laughter at the end.
hyper speed!
When one of the skating rink attendants had to ask us to slow down, I realized just how much fun I was having as well. As we left the rink and headed for home, sweat dripped from my exhausted body. John Paul still chuckled every so often, the memories of our time on the ice rippling through his body.
my dad even pushed John Paul
I’d never connected with him like this before.

Perhaps the proof of the pudding was the next time I came home, a year later or so. I walked in the door and asked John Paul, “John, would you like to go skating?”

He started laughing and squealing, ready to go it seemed. When we were about to lift him from his bed into his wheelchair, I told him what we were about to do, and he said, “K”, which I soon realized was his way of saying, “Ok.”

And I had thought he’d never be able to understand anything I said to him. It took ice skating to bridge that gap between us. My parents now believe he understands most everything we say around him. Every time I go home I try to take him for a spin at the local rink. And he loves it. And I love him.

My little brother loves ice skating just as much as I do, maybe even more!

May God bless you,
Father Kevin

PS: My dad is entered in a contest, just during May, to try to win a new mobility van to transport John Paul in, would you please cast a vote for him? Here’s the link: If you would like to receive daily email reminders until the end of May, just let me know.