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.
