Riding the bus

Wow, schoolbusses haven't changed in 30 years. Rode the bus for the first time yesterday in about that many years because my boy was riding it home from school for the very first time. The only thing different from the bus I rode was that there are now seatbelts on all the seats, and since this was the "short bus," there were tie-downs for wheelchairs. It was a pretty fun ride actually. Great view of the city as we rode through it, driver is very nice, and my boy got a kick out of it (although he won't admit that to his mom).

Now, more about that short bus thing. I never thought of that term before, but now it sounds like a racial slur. Maybe it's on my mind because that new show Glee had a "short bus" joke last week--along with another "special ed kids" joke. I don't think the writers of Glee, or folks generally who make such jokes are malicious or intentionally hurtful. But, those "jokes" are ignorant and insensitive. I guess I was ignorant before joining the disability community through my son. I don't know that I ever made short bus jokes, but I know I lacked the sensitivity and understanding that my boy--and everyone--deserves.

Well, ultimately, the short bus is pretty damn cool and a much more sane place than the "long bus" that I rode as a kid. If everyone just rode it just once, they'd realize that there's nothing funny about those jokes.

My superhero

I was never heavily into comic books when I was a kid. I mean, I enjoyed reading Thor and Spider Man and, most of all, The Avengers and all, but I was never a collector or anything. I did, however, love my Mego world's greatest heroes action figures, so I guess I did really like superheroes generally. But now, I'm obsessed. I love superheroes. Maybe it's because I gravitated towards things that gave me joy and comfort as a kid as soon as my boy was diagnosed with a life-threatening disease. Maybe it's because the world of imagination and fantasy is one that is just as equally available to my boy as it is to any other child--even if running and jumping is no longer in the cards, at least he and I can read about Iron Man's origin and both think it's pretty darn cool.

And then there's the X-Men. One of them shares a name with my boy and then there's the superhero in a wheelchair--Professor Xavier, or Professor X. What a cool character, what a great role model, what a wonderful thing to have a SUPERHERO in a wheelchair! The first two things I bought for myself as a direct result of learning my family is on this journey were (1) a photo of FDR in a wheelchair, and (2) a fucking awesome Professor X statue. Both for my office, both as constant reminders that my boy, too, can see himself as President and as a superhero.

So today, he's finally old enough to appreciate his very own Professor X. So, I found a cool action figure on amazon -- from the X-Men movie. Patrick Stewart as Professor X in a wheelchair. I can't wait until it gets here. And my boy's face lit up when I told him about the superhero in a wheelchair and about the toy coming that he can play with.

He may play with this toy and see Professor X as a great superhero, but my boy is my superhero. And no father has ever been as lucky.

Welcome

Where to start? Not at the beginning -- not yet. There's time for that. I'll start now by saying that this is a blog about perfection and flaws, about all that is right in the world and things that are wrong. But, mostly it's about my effort to be as good a dad as my son is a perfect boy.

Being a good dad--a really good dad--is not necessarily easy. We men aren't usually brought up to be good dads. Yes, maybe we learn we must love and support our family, but that's just the minimum that should be expected--rather, demanded. But fatherhood is riddled with challenges and struggles. We're all going to mess it up now and then. And, more than anything, we often just won't know what to do a lot of the time.

So, that's on my mind all the time. But the main point about this blog is to share my thoughts about navigating the world with my son who uses a wheelchair. He has a neuromuscular condition called spinal muscular atrophy and that causes muscle weakness and that means he can't walk. More on all that in another post.

But, what I'm trying to figure out is how to deal with an imperfect world on my boy's behalf. You see, he's only 3 years old. So, I still need to protect him, provide for him, and teach him how to navigate in an able-bodied world and teach him to have confidence, certainty, and inner strength. I need to make sure he knows he is perfect, even if his body fails him. I need to make sure he knows that when people stare or make ignorant comments, they're the ones that have something wrong with them, not him. He is my perfect boy in an imperfect world.