SMA: A Mom's Perspective

It's been exactly eighteen months since the twins' diagnosis of Spinal Muscular Atrophy type 2.

At first, I would cry daily--multiple times, daily--over the injustice of this diagnosis. This went on for months. Maybe a year? I was pretty good at timing my breakdowns properly, so that they weren't terribly inconvenient. Always happened when I rocked them to sleep at naptime and bedtime. There's nothing like nursing your baby in a rocking chair in a dark room while a lullaby plays to make you imagine what life without him, or his twin sister, will be like one day. I know that none of us know what the future really has in store for our children, even our perfectly healthy and normal children. But to be diagnosed and then watch a progressive disease become more and more debilitating in your baby.... I don't know. I don't have experience with other awful childhood diseases, but I might suggest that SMA is among the worst. It's like, "hey the good news is that your kids qualify to Make A Wish. And the bad news is that your kids qualify to Make A Wish." Thanks, but no thanks. I just want to drive my kids to a park and let them play. I don't want to have to research wheelchair accessible parks and then coordinate to make two trips to this park (because I can only transport one wheelchair at a time) so that the kids can be "normal" and ride up the ramps that the other kids are running up. And make no mistake, their wheelchairs are $65,000 machines that I have had to fight tooth and nail for and fight through the bureaucracy and withstand my impatience and beg and plead and wait for. And I'm still waiting on Kyle's chair. I'm just talking about Lauren's. And don't get me started on the shit I've wrecked around here just trying to move her chair around, in and out of door frames.

Anyway, for the first 12+ months, I really couldn't talk about their diagnosis with people. With doctors, it was one thing--an exam room is a very clinical setting where I can detach myself. But in a public setting, or even just sitting in my hairdresser's chair....those were the worst moments. I prayed that nobody would make me explain that my two babies are not normal, and that they have a terminal disease and have already beaten the odds because they've made it past their second birthday and that we take no healthy day for granted. But now? Man, I can't remember the last time I cried. Well, yes I can--Logan's would-have-been birthday (he would have turned 5 years old last month, if he hadn't passed away 11 months ago), and several other children this year who died of complications of SMA, I cried for them. But I can't remember the last time I cried over the future of my own children. It's been months. Wow, what progress I've made. (Can this really be considered progress? I've stopped my daily breakdown over my children's fate? Let's save that talk for some other time, though.)

A lot of it is from coming to terms with the fact that the twins continue to stay so healthy. They don't really "look" like they have a disease. They've had few respiratory problems in their lives, overall. Another reason that my tears seem to be drying is that I've watched other families struggle with far more critical SMA-related circumstances and I realize that I don't have much to complain about here. Our "troubles" are more "inconveniences"--trouble with weight gain, the occasional cold, trying to procure wheelchairs and a minivan to transport us all, etc. Our daily challenges here do not typically include life saving measures, like they do for some SMA families. We don't yet have to have an end-of-life morphine strategy, or DNR documents prepared or anything like that.

You know, I used to work in IT before I got pregnant with the twins--I was a real person, who worked in a real cubicle for a real company with a real 401k plan and a real cafeteria with really crappy yet cheap food. I think I feel like pointing all this out because SMA took me by such surprise--you probably don't know what is SMA is, and neither did I. I used to be just like you. But ignorance doesn't make SMA go away or make babies stop dying. But let me just say that if ever there was a use for MS Project, it's when you become the parent of a child with a chronic disease. Let's assign "achieving acceptable bi-pap settings" as a "work object" and assign resources to it, right?

Before I get further off-track, let me drive home my point: I want to make sure that everyone who knows me understands what SMA is and how it affects my family. I want you to care. I want you to ask me specific questions. I didn't before. But now I do. And the good news is that I probably won't even cry now when I answer your questions. But not asking questions? That makes me think you don't care, which in turn makes me not want to share things spontaneously. I consider myself an attention whore when it comes to my kids and their disease, but I try not to invoke SMA into conversations with non-SMA families unless someone else approaches the topic first. But really, don't be afraid to ask questions now. I might even keep my sense of humor when I answer.

What you might be wondering: Yes, they are taking medication that we think helps them. Yes, they are pretty happy children. Yes, I do imagine what life would be like if all three of my children could walk. No, there is no therapy or cure for SMA. No, SMA doesn't affect their intelligence--they may even be smarter than you (but not me--I am their mother). No, they cannot sit up on their own, or crawl, or roll over, or walk. They can't even cough, or lift their heads up after a good sneeze. But they can sing, and they can dance in their chairs, and they know the anatomical names for most of their skeletons (that was my teaching) and they can brighten your day over and over again all day long just by being in the same room as you.

So there's my point. I don't cry everyday anymore. Can we please cure this disease? And then we can talk about unicorns and rainbows and hockey and golf. (My obsessions with hockey and golf are my escape, in case you haven't already guessed.)

Thanks for listening. And ping me if you want to golf. I'm always up for golf. Unicorns too. And hockey tickets (the free kind).