That’s what my son told me last night. He was earnest and troubled because he genuinely wants to hit a golf ball. And a baseball. Tennis ball. Shuttlecock. He REALLY likes the idea of that cathartic WHACK of hitting a thing farther than anyone else can hit it.
I reminded him that I am a pretty terrible golfer. If I’m on your golf team, I may bring the personality (and…the profanity) but not the shots. Nobody should want to hit like me. But my son wants to play golf. To watch his drive soar into the air. I explained to him, again, that not only is he very young but his muscles are too weak. He asked me my age. I told him thirty seven. “So when I’m thirty seven, I can hit a golf ball up into the air like you do?” I reminded him that his disease makes his muscles too weak. His arms are not strong enough today and even when (if?) he reaches thirty seven he likely will not be able to hit a golf ball into the air. Or maybe not–he practices drills at home.
“I don’t like SMA, Mom. I want to do things. I want to hit a golf ball up into the air like you do.” He looked down and drove his $65,000 electric wheelchair off to pout in a corner. What do I do now? I have no idea. I am as age-appropriately honest with him, and his twin sister, as I can be–but how to explain to your six year old that thanks to a stupid Punnet square he can’t participate in the things which are important to him? How to explain to him that he should feel lucky to even be still alive now at age six? I don’t know. I don’t have the answers. I just want no other kid and no other parent to hear a diagnosis of SMA and feel the grief and despair that my family has felt. And there are thousands of families who have dealt with the same situation–or worse.
August is SMA Awareness Month. Every August, overwhelmed parents of terminally ill children with zero free time on their hands hire a respite caregiver so that they can blog, Facebook, or otherwise share their stories and do their part to increase awareness of Spinal Muscular Atrophy.
As it happens, I am lucky enough to be an early bird who gets the chance to blog before the kids wake up. Before the feeding pumps beep and stop for the morning, in between the twins’ needs for repositioning, to aid them in comforting their bodies as they sleep because they can’t just turn their bodies on their own–raising awareness of SMA is important enough for me to take the time right now to tell you about it.
I’ve written about Spinal Muscular Atrophy every August for the last four years, hoping to increase awareness and public interest in the disease and generate compassion for the children affected by it.
The bottom line is this: Newborns, toddlers, grade-schoolers die because of SMA almost every day. Of these kids, most die because their diaphragms and other breathing muscles are too weak to allow them to breathe. I highly encourage you to read this parent’s experience: Loving Wyatt to the End.
This disease is genetic. It is not a random happenstance, like identical twins or landing at your destination’s airport bar just as happy hour has begun.
SMA may not be your kids, but SMA is my kids. It could be your future kids, your sibling’s kids, your neighbor’s kids. SMA is the most common genetic killer of children and one in forty of us carry the gene which causes it. You can be tested to learn whether or not you are a carrier. Your unborn child can be tested via amniocentesis. If your doctor suspects your child could have SMA, there is a blood test to determine it. These tests are not new. Still, not enough of you are aware of SMA. I know that not enough of you are aware of SMA because if even half of you were really aware of SMA then society would be screaming it’s head off about it and SMA would be cured by now.
In the article linked to above, Paula buried her baby because of SMA. Because of SMA she lives today with the memories of her sweet infant’s last moments and of burying him. Because of SMA my six year-old twins will live in electric wheelchairs and be dependent upon a caregiver (me, most likely and happily) to tend to their every need for as long as their weak respiratory systems can carry them. These kids are incredibly intelligent, highly social, gloriously happy individuals with great senses of humor–our world needs more of them, not less of them.
Still, my twins’ worlds involve daily back and hip pain (thanks to scoliosis and subluxation issues resulting from muscle weakness) , chewing and feeding struggles (weak tongues and jaw muscles), and futures of spinal rod/scoliosis surgeries, acute respiratory distress and hospitalizations for pneumonia. Add to that the frustrations on their part in not having the hand strength to shoot a Nerf gun, swing a bat, press the “B” button on a Wii remote, remove the cap of a Crayola marker, lift a full sippy cup up to their mouths or even grasp a pencil hard enough to adequately write their names on a piece of paper.
I spent the first year after their diagnoses grieving. And then I got off my ass and became determined to help find a cure for this horrific, debilitating disease. SMA will take my children from me one day, but I will do my damnedest to prevent other children from suffering so much and to prevent future parents from enduring such pain. I cannot personally cure this thing, but I can raise money and make a difference–and so the Walk And Rolls and golf tournaments keep me busy so that I can detach a little bit and get distracted and feel productive. I no longer feel so helpless in keeping my kids alive (with my own two hands, sometimes–literally) because I am doing something to help people smarter than I am to cure this thing.
But I need everyone else’s support, too. SMA may be overwhelming, but it’s curable. I hate SMA. I’d much rather worry about the cost of sending my twins to college than pondering the probability that they will even live to see college. But reality is reality. All we can do is work as hard as we can so that my reality and my twins’ reality isn’t someone else’s reality in years to come. Nobody wants a cure for SMA more than we do. SMA does not define my children but it dictates how we live our days for as long as we keep living them.
So. This is SMA. It’s our daily reality. If this stream of consciousness makes you aware of it, then good.