{SMA Awareness Month} A Six Year Journey

I don’t often write too deeply on Spinal Muscular Atrophy around here, but seeing as August is SMA awareness month I thought I would write a bit about my journey since that day, slightly more than six years ago when that acronym first entered our everyday lexicon.

This year in particular I’ve reflected more on SMA thanks to good ol’ Facebook. At some point they rolled out a feature that showcased “memories”, statuses and pictures from the past, in your feed. I selected to receive these updates on a daily basis and I enjoy opening up Facebook in the morning and reliving the humorous quotes and pictures from the recent past.

Except around May of this year I started reading my memories and coming across the statuses I was posting as we started trying to investigate why our baby Fulton was not reaching his milestones. Soon these status updates became lengthy notes to update friends and family or what was quickly becoming a scary situation. Honestly, back then I assumed it would be nothing. What were the chances that my child would have some incurable condition? It was much more likely something simple and easy to treat. The Google and WebMD searches turned up all the usual horrible stuff, but that’s what they do right? I didn’t seriously think that one of those rare diseases that kept popping up at the top of my search page could really relate to my son.

 

Finally the day arrived when one of the memories Facebook shared with me was the one announcing Fulton’s diagnosis. I remember I posted the day after I got the phone call from the doctor. We were told results would take a week and finally at the absolute last-minute she called and apologized. The genetic test they ran to “rule out Spinal Muscular Atrophy” actually showed that Fulton had the disease.

I always make a mental note of the day of Fulton’s diagnosis each year as it passes, but this past June, to see the status, as fresh on the screen as if it had been typed minutes before, hit me hard in the gut.

When you are handed a diagnosis like SMA, almost immediately you think of everything your child will never do; things they physically are incapable of, things they will have to sit on the sidelines and observe, things that they will not live to accomplish. With one diagnosis these dreams are stolen and all that is left is a black unknown. It seems impossible to imagine a happy and joyful life for your child or your family when everything that you believe to be a birthright is swiped out from under them seemingly without reason.

After I posted about Fulton’s diagnosis in 2009, I honestly didn’t think I would ever be able to experience joy again. I was resigned to let SMA ruin my life forever.

As I made peace with that old status on the screen, I clicked over and started typing a new status, one that hopefully will make it’s way into future memories.

SMA sucks, but life with SMA doesn’t have to suck. Every year Fulton and Teddy are on this earth is reason to celebrate. This year, Fulton turned seven, SEVEN! Do you know what’s it’s like to sing Happy Birthday to a child who was given a diagnosis of SMA? A disease which claims 60 percent of those affected by the age of three? Next month he starts second grade CCD and prepares to receive his First Holy Communion! I’m tearing up just thinking about it.

I’ve been blessed with Fulton for seven years and Teddy for four and a half. And they’ve been joyful, happy years! Yes they are hard and there are moments that tear at my heart, but since those first few months I have learned to smile again, and I’ve never stopped.

Life with SMA has taught me that I control the joy in my life. It is not restricted by failing motor neurons, the medical establishment, or any other outside source. And I’ve seen that SMA has failed to suck the joy out of Fulton and Teddy’s lives too. They didn’t get the memo that kids in wheelchairs should be forever upset about not being able to walk. Let me make it crystal clear: kids with SMA are happy to be alive! They love their lives even when it makes society uncomfortable. As I wrote yesterday, their diagnosis doesn’t make them less than perfect or less lovable. It is our job as their parents to bring as much joy to their lives as they bring to ours, not let our fears and sadness restrict or ruin their shortened time on this planet.

I refuse to give SMA any more power over my life, or that of my sons and family, than it absolutely has to. Pity the people in this world that can’t find joy and happiness despite prosperity, health and stability. Pity the people who are miserable and complaining while surrounded by every luxury and convenience. Pity the people who aren’t grateful for anything when they seem to have it all. Pity those with bitterness and resentment in their hearts toward their family and neighbors. We’ll always take your prayers, but save your pity for those folks who are handicap in spirit, because we remain whole in the Lord and unbroken in our souls.

Barring a medical or spiritual miracle, SMA will eventually take all, but I’ll be damned if I’m giving it any more than the absolute minimum before then. Six years has taught me that different isn’t bad, hard isn’t impossible and that you can find joy in both.

So again, F*** you SMA! You’ve never been nice to us, so I’m through being nice to you. You’ll have to take a back seat to our lives, our plans and our joy.

 

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