Spinal muscular atrophy – three words that changed our lives forever. Three words that still feel like a massive, medical mouthful to say. Three words that seem far too serious and heavy to be associated with the fun-loving, light hearted little boy I know. Three words that still cause blank expressions, glazed eyes then shock and sadness when you explain the conundrum of what these three words actually mean.
Today is sma awareness day and it’s very easy to read a few fact sheets, check out some statistics and share a few neat graphics but what happens when you are the statistic, what happens when you’re living the fact sheet and what happens when the neat graphics depict your life? Well here’s my take on our family living the fact sheet for real:
The fact sheet:
- Sma is a rare neuromuscular condition that causes progressive loss of movement & muscle weakness.
- 1 in 40 of us carry the gene that causes sma.
- There are three main types of sma – type 1 is most severe and children of this type will rarely see a second birthday.
- Sma is a life limiting condition.
- There is currently no cure but there is now a treatment aimed at halting progression.
Living the fact sheet:
Sma causes progressive loss of movement – the reality of this statement is both terrifying and heart breaking to watch. When our little Zac was around 7 months old we noticed he stopped rolling onto his side to sleep, then he stopped rolling over all together. He never reached the milestone of sitting up and we watched him struggle for months with trying to keep himself up in his hi-chair and buggy before we finally managed to get a diagnosis. We saw his little legs lose all movement and we watched as he lost strength in his arms. It’s heartbreaking to say some of his first sentences were “I’m stuck”, “help me”. Worst of all we witnessed rapid deterioration of his respiratory muscles and we’ve helplessly sat by a hospital bed too many times while he’s battled with every fibre in his being to keep these muscles working. That was the reality for us but thankfully a new part was added to the fact sheet and a new treatment was discovered. We received a miracle and Zac started treatment – thankfully since then we’ve seen amazing progress and we’ve celebrated Zac getting stronger but it didn’t happen over night or by magic. We had to learn to be physio, nurse, carer as well as parents. We carry out daily stretches, exercises, breathing exercises, water exercises, positional changes – all designed to keep Zac’s muscles working and be as strong as they can. Then to best support all this work a multitude of equipment takes over your house; comfy chair, wheelchair, stander frame, bath seat, toilet chair, wizzybug, comfy mats & support cushions, breathing machines, feeding pumps & tubes. A cupboard needs set aside just for medicines & special feeds and pretty much the layout of your house needs designed around all of this stuff!! Daily life revolves around treatments, hospital appointments, home appointments, medicines and feeds as you fight daily to slow down this progressive loss of movement.
Next you deal with the fact that you are the statistic on the fact sheet – we are the 1 in 40 who are carriers of the gene that causes sma. This comes with its own journey of emotions (see my previous blog “learning to love your genes”). When you become the statistic and you become “sma parents” you devote your life to caring for your child. You stay up late researching medical terms, medical advances and all that surrounds life with sma. Your priorities in life change and you now focus on making it through the every day. Your financial situation changes, work situations change, your friendship circle becomes smaller and your life is somewhat ruled by this condition. But being this statistic has made us stronger – we’re a team; we’re both exhausted, both give everything we’ve got, we face the challenges together and celebrate the miracles together. Sma makes very different demands from both of us but each ones demands are equally essential to making our “different kind of normal” work.
Our whole life was thrown into a whirlwind that day we heard those three words – spinal muscular atrophy. We’ve become the fact sheet but the fact sheet can only give you words, the fact sheet cannot possibly convey the incredible human spirit that the faces behind the facts have. The fact sheet tells you that physical strength will deteriorate but sma warriors have the most super human strength of character, their determination is inspiring and they are far more than their condition.
So next time you see a fact sheet with those statistics & neat little graphics, remember there are real people living it and a whole lot more goes into daily life than just the sentences on the paper. We are a family where the fact sheet has become reality and now we’re living our “different kind of normal” to the best we can.