A Tale of Two Young Men

Labor Day weekend, and time for the Muscular Dystrophy Telethon. As a child, I remember watching Jerry Lewis raise money, with the help of his celebrity friends, for the fight against MD. They were compelling and I was determined to do my part, because ... well, Jerry and his famous friends wanted me to.

Today, the fight for Muscular Dystrophy and Labor Day weekend have a much more personal place in my heart.

Meet Chris.

He's the one in the wheelchair. 

(The goofball next to him? That's Alex, my youngest son. Oh, and because he's a goofball, he decided that in this picture, from their high school graduation, it would be fun to give Chris bunny ears. And if you look closely, you'll notice that since Chris couldn't return the favor, Alex gave himself ears - or at least tried. Then there's that whole loser thing ... )

Alex and Chris met in elementary school, when Chris got his first chair and needed someone to carry his books and assist him with the elevator. Alex was quiet and shy, not quite fitting in. The teacher thought that maybe this would help get Alex out of his shell.

And thus began a lifelong friendship. On field trips, Alex would ride the wheelchair accessible bus with Chris. Alex spent a good portion of his summers with Chris doing crafts, playing video games, making rockets, exploring — you know, normal boy stuff.  Alex accompanied Chris at the local MD telethons - even ending up on camera. 

One of Alex's junior high teachers told us Alex needed to get some "normal" friends, she thought the friendship with Chris wasn't healthy. Say what?! Define 'normal' ... Define 'healthy' ...

For their last day of high school, when the senior class traditionally parades onto the school grounds in decorated cars, Alex decorated and drove the van so Chris could take part in it — I mean, who wouldn't rather drive a wheelchair mini van instead of a two door coupe at a high school event? They had a joint graduation party at Chris' house. When Alex went off to college, he looked at residence halls with an eye on which had elevators and would be accessible for Chris to visit. 

For Alex's first birthday, away from home, we surprised him with a dinner at Applebee's — selected for its accessibility. Ironically, in college, Alex encountered a group of students working to raise awareness that the university's historic academic buildings weren't accessible. They were blocking the door Alex was going to enter, telling him he needed to find the handicap entrance to better understand the needs and challenges of those in wheelchairs. From what I understand — the students got an earful and Alex used the door they were blocking. 

When Alex and Chris attended board game nights, Alex devised a way to hold Chris' cards so that Chris could participate when he could no longer use his hands. 

And when it was time for Alex to graduate from college, he made sure special arrangements were made so that Chris could have seating on the field, and asked Sue, Chris' mom, to host his graduation party so Chris could be a part of it.

Don't get me wrong, Alex wasn't a saintly kind of boy (a description Sue gave him) and doing this for show or brownie points. Alex and Chris had an extraordinary friendship that benefited both. Alex wasn't above telling Chris that just because he was in a wheelchair didn't mean he had the right to be a jerk. And he'd call Chris out if he thought he was being mean to his mom, reminding him that he depended on her and needed to be nicer (this may be why Sue thinks Alex is a saintly kind of boy. More on Sue later — she deserves her own entry.) 

You see, where others saw a boy in a wheelchair, Alex saw a person. A person with special needs and limitations, but a person none the less. And eventually, that person, and his family, became our family. Shared holidays, end of school year bonfires, birthdays, outings, weekends ... what had started out as Alex helping a student, in elementary school, turned into something that none of us could have imagined.

Throughout all of this was the underlying reality that Chris had Duchenne Muscular Dystrophy, a particularly cruel disease that affects mostly males and is faster in destroying the body's muscle. Chris' life expectancy was 18. There was no denying the inevitable.

When the boys were in high school, I'd try to bring up the subject with Alex — did he and Chris discuss what was coming? Alex would tell me "Mom, Chris and I don't talk about this. He has other people who want to talk to him about depressing stuff. We do happy and fun. I'm his friend. I'm focused on him today." So we braced ourselves. Convinced that when the time came, we were going to have to pick up the pieces. 

Chris surprised us, which shouldn't have surprised us. He lived past 18, then 20, then 24... His spirits never flagged even when his body was giving up.

That was then.

On Saturday morning, September 3rd, 2011, I received a call from Sue telling me Chris was dying and he wanted to make sure Alex was told. She understood that Alex wasn't comfortable with death and didn't expect him to come, Chris just wanted to know that Alex knew. So I called Alex, then held my breath. Unsure of how Alex would respond.

Alex surprised us, which shouldn't have surprised us. He said there was no where else he needed, or wanted, to be but with Chris. He  went and helped Sue tend Chris, shh-hing visitors if Chris was sleeping. Never leaving his side all day and into the evening as visitors came and went (that's him in the background, keeping guard.) At one point I walked in and witnessed Sue and Alex working, as a team, to cool Chris down with cool wet towels, trying to make him as comfortable as possible.

Was this my son? Mopping the sweat off his friend?

It was about 6:00 that evening when Sue left Chris' room to alert someone else the end was near. After Sue had gone, Chris woke, asked Alex to stand where he could see him, and then said good-bye. Chris was 25.

Two years ago today, on the Saturday before the MD telethon, I watched, in awe, the strength of two young men. Two men who surprised us, first as boys, and now as men. One courageously coming to the end of his life ... the other courageously trying to ease that transition. 

It was a rough day. My heart still breaks when I think of what my son experienced and yet I couldn't be prouder of the man Alex proved he was. 

Because of his lifelong friendship with Chris. 

A life that just wasn't long enough.

And so, this weekend, I make my annual donation to the Muscular Dystrophy Association and designate it for Duchenne research. 

I do it out of love for two incredibly strong young men.

I do it in memory of Chris. 

I do it in honor of Alex.

I do it in the hopes that this story won't be repeated in the not too distant future.