Being a Mum to a child with SMA is the most rewarding yet isolating feeling.
On the one hand, your child, for whom the specialists have a relatively negative outlook on, continues to surpass all expectations and you find yourself in awe of their strength and determination (and it is this that forces you to get out of bed in a morning).
Yet on the other hand, no matter how many friends and family you surround yourself with, you know that this is a burden (and I feel awful saying that word) that you must shoulder alone as no one else can possibly understand what a mother goes through for her child.
I have sat at play groups and watched my child try to integrate with her peers, the physical struggle not putting deterring her, when all I have wanted to do is retreat to the comfort of our own home, where I know I can protect her (and me) from all those pitying looks and heart-wrenching moments when you just wished that you could sit drinking coffee like them and not having to hold your child up so they can even remotely be involved or keep your eyes on the other children to ensure your child is safe.
Bitterness – this is something that I battle with every day. I do not want my daughter to grow up mad at the world but that is exactly how I feel since her diagnosis. I regularly question “Why us?! What did we do?”, and have even found myself thinking what life would have been like had I not a child with SMA? When other parents of toddlers make throw away comments about the fun beginning once they witness their child’s first movements, be it crawling or walking and deep within me is an anger wanting to say, “So we can’t have fun because we were robbed of those moments?!” are just some of the examples of how I find myself feeling. However, rarely do I let the positive façade drop. I have to be Wonder Woman! That is the expectation (in my head anyway)
I am so tired of fighting, yet I know the fight has barely begun. Only today I was fighting to try and get Wheelchair Services to see how ridiculous not allowing our children to have motorised chairs for outdoor use until the age of 11 is absolutely despicable! Unfortunately, it was another battle that fell on the ears of a one size fits all system. The woman telling me about their “terms and conditions” had no idea about the morning I had had introducing my 3 year old to a machine that forces her to cough to try and prevent the awful autumn/winter we had last year.
All that being said, I feel grateful to SMA in many ways. It has opened my eyes and humbled me beyond belief. I am horrified that pre Elsie, I must have been walking around with my eyes shut to disability and difference. Well now they are firmly opened and whilst it’s not always plain sailing, the goals achieved are so much more rewarding. Each birthday reminds me that if she has the resilience and ability to keep going, then no matter how exhausted, physically, mentally and emotionally I may be, I owe it to her to be her advocate, fighter and as much as possible super hero. However, I also have to remember that I am just one person and I cannot walk this road alone. To all you other SMA parents out there, we are all on this journey together and whilst our paths may be different, let us be a comfort and support to each other along the way.