Unconditional love

Wow. I sit here with a tear rolling down my cheek. I'm not sad, I'm just so touched and happy and amazed at the love one person can feel for another. No, not me loving my boy (well, of course, I do, but this post is not about that). I'm talking about the unconditional love of an adoring sibling.

See, my boy has an older sister. She's six. She's a typically-developing spit-fire. She can be quite a handful, but she's also the most loving, caring, amazing little human. Here's what just happened...but first the background. My kids share a room. Their beds are along opposite walls from each other. When we tuck the kids in, we always pull up the covers and give them kisses. My girl won't get to sleep unless she has at least a sheet on her (just like me...I need at least some covers). My boy can't pull his covers up because of the muscle weakness from spinal muscular atrophy. Thus, we always pull up the covers and tuck them in.

So, it's been a really great day so far. Took the kids to a museum, saw a great mummy exhibit that they thought was really cool, took the boy for a much-needed haircut, and played Sorry and Zingo as a family before bedtime. They were really tired by the time teeth were brushed, pajamas were on, and books were read. And when they're over-tired, they don't want to sleep. And when they don't want to sleep, they don't want covers on. So, the wife and I just told them goodnight and turned off the lights without covering them up. So be it -- my girl can pull her own covers up when she's good and ready, and I can go in after my boy has fallen asleep and cover him up.

Flash forward 15 minutes. I tiptoe into the kids' room and...my boy already has his covers puled up perfectly and is sound asleep with the most peaceful look on his face. My girl is still awake and tells me -- "Daddy, I waited until he was asleep and then pulled up his covers."

My heart melted. I never asked her to do that. Never suggested she do that. Never even mentioned I'd come back to cover him so he wouldn't be cold. She just did it all on her own because she loves her little brother and wanted to take care of him. I cried when I told my wife. How amazing is she? And, she does little things like this for her brother all the time. She loves him beyond anything I've ever seen. He is blessed to have her.

And I'm the luckiest Daddy in the world to have them both in my life.

Just not fair

So, I'm on a cross-country flight and they show this interesting documentary that brought together Jack White (of the White Stripes and now The Racounteurs), The Edge (U2, of course), and Jimmy Page (Zepplin, natch) to talk about playing the guitar, their unique styles, influences, etc. It was pretty compelling and really gave me an increased appreciation for White. I have been a fan of White Stripes for quite some time, but now I understand his influences in southern, bare, rough blues and see how they led him to create this very spare, honest sound. Luckily, I had my iPod with me and could listen to all the White Stripes music I have in the isolation of a tin can hurtling through space and noise-canceling headphones.

Okay, so that was pretty cool. And, it made me think of my boy, who is a huge music fan. And, for a 3 (now 3-1/2) year old, he really has definite tastes and preferences. Blue Note era jazz -- wonderful; Pearl Jam, Green Day, Wolfmother, White Stripes -- great "rockin out" music as he calls it; 80's new wave -- usually likes it, calls it "Squeeze music"; The Beatles -- he has yet to develop a taste for them...oh, but he will...yes, he will. He has of late developed an unfortunate (in my view) appreciation for a current Miley Cyrus hit, but he is 3 after all, so that can be forgiven.

Anyway, all this led me to think about how he'll never be able to play the guitar. I don't know that he'd ever want to, but watching those three incredible, innovative musicians, and their love for music and drive to create something of their own, I can imagine my boy would have the drive to do the same. But, he'll never have the strength to really hold a guitar, much less mash down the strings. And that just sucks. I try my damndest to think -- "So what? He can appreciate music, he can maybe even play an electronic drum set for kicks" -- but sometimes the unfairness of it all overcomes the sunshine attitude. And, sitting on that cross-country flight, alone (in the real sense at least) and in the dark, I could not escape the reality that it is just not fair.

So, readers (if there are any), this life is not all wine and roses.

Thanksgiving thoughts

Okay, it has been far, far too long since I posted anything new. Sort of like joining a gym and going for the first couple weeks but then never getting around to it. I don't want this blog to become a virtual Bally's Fitness, though, so I will have to be more disciplined. Now, on with the show...

It's two days after Thanksgiving. This is the second Thanksgiving since my boy was diagnosed with SMA. The second Thanksgiving with him using a wheelchair to get around. This year, though, he has his powerchair--a wonderful machine that enables him to run around with his older sister, go where he wants to go, explore on his own, and even get in trouble sometimes. This year, I'm thankful for Permobil (the company that makes his powerchair). I'm also thankful that we're healthy. Big sis recently had a nasty, lingering cold, and both Mom and Dad have been under the weather this Fall/Winter, but my boy has been sickness-free (knock virtual wood). We're all seasonal and H1N1-vaccinated, and citrus plays a prominent role in many meals.

More about Thanksgiving. Well, it was Thanksgiving 2008 when I had a real epiphany. My boy was diagnosed with SMA in February 2008 and by November, I was back to work, our family had settled into a routine of therapy appointments, specialist visits, and the sort. Life felt pretty normal again--the new normal at least. But, there was still this lingering sadness within me. I was still mourning my vision of what might have been, the father-son activities I always had in my head but now I thought were impossible because of my boy's muscle weakness, inability to walk, etc. I had overcome the profound shock, grief, anger, resentment and whatever other typical stages of grief or loss may be, but I was not yet to acceptance. I still thought of my boy as someone who had been unfairly inflicted with a life-threatening, debilitating disease. I saw the disease as something that had happened to him and wished so much that it hadn't.

Then, we were sitting around the Thanksgiving table with family and dear friends. Everyone was going around and saying what they were thankful for. I knew I had plenty of blessings to recognize--a roof over our head, plenty of food, a loving family. Despite the pit of sadness that dwelled deep down, things were okay. But, as we went around the table and everyone said their piece, it came to my boy. What was he thankful for? "Hot coffee." It was one of the funniest things I'd ever heard and the whole table erupted with one of those laughs that had to do not just with the joke at hand, but with all the underlying emotion of the day/the moment/the year that had been. My boy -- not yet 2-1/2 years old -- was laughing hysterically. He knew he was making a joke-and a good one at that. At that moment, one friend at the table (a great dad in his own right) said he was thankful that my boy was always the happiest person in the room. And it's true. His disposition is just joyous. He's funny, he loves playing with toys, he's inquisitive, he thrives.

And then it happened--the sadness lifted. I stopped seeing my boy as someone inflicted with this terrible disease. I no longer thought "if only he didn't have SMA, he'd be able to...". I realized that he is who he is and SMA is part of that. If he didn't have SMA, he'd be a completely different person. That's a biological truth, but it's also a metaphysical one. He's not my boy with a disease, he's my boy, disease and all. It's part of who he is. And, it's now a part of who I am, who my wife is, who my able-bodied daughter is. It's not an affliction, it's a part of humanity's biological diversity. Yes, it still sucks. I'd still love for a cure to be developed. I still fear for sickness, pneumonia, further physical deterioration, scoliosis, and a host of other things. But, I don't think "what if" and I stopped thinking that "we can't do X, Y, or Z." Instead, the calculus is "how can we do X, Y, and Z." And--guess what--we can do A, B, and C, that we would never have done otherwise and that we never would have even thought about. Full disclosure--I'm not always in this good place. There are still dark moments when I can't really catch my breath, but they are few and far between--and my outlook, my paradigm has shifted.

So, what about Thanksgiving 2009? I have even more to be thankful for. My family is tight, strong, loving, happy, and healthy. I went to see the movie Precious last night. It was another reminder that so many people live with such profound challenges, survive through adversity, and really did draw the short straw in life. Thank god, that's not the case with my boy. My boy is someone living with a disease called SMA. He's someone who uses a wheelchair (he's not "in" a chair, he uses it...it is not what defines him). He's also valued, hugged, read to, sung to, and surrounded with love. I wish all kids were so lucky.

Happy Thanksgiving.

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.