Buying shoes for your child; it is something most of us would take for granted.
However, buying shoes for my child is an arduous and almost impossible task that often ends with me feeling depleted and disappointed.
My child has severe feet contractures caused largely by his increased tone that affects his entire body due to his brain injury sustained at birth.
It’s something that could have possibly been avoided, however he spent a lot of his first year in hospital therefore missed out on a great deal of important therapy.
Basically, his feet turn outwards and when manually brought into a more natural position, they won’t stay there.
He has limited movement in his legs and feet which also doesn’t help.
It leaves me once again asking what if?
There have been times I have despaired because I’ve punished myself over and over, asking myself questions that nobody could ever answer.
What if he hadn’t have developed a devastating epilepsy diagnosis at just a few months old?
What if we’d been able to better control his reflux so he’d not become so dangerously underweight when he was younger therefore not spending so much time in hospital?
What if we’d started therapies sooner? What if I’d tried harder? What if I’d done more?
Slowly but surely though, I’m finding ways to be kinder to myself.
The mum guilt has never gone away, I doubt it ever will. But I will no longer punish myself relentlessly day after day.
I’ll allow myself to ask the questions and to have those feelings then I’ll try to distract myself until they pass.
This particular guilt though, it’s a huge one that I carry daily. What if I’d done more with his feet. Could I have prevented the contractures becoming so severe? I guess I’ll never know. It’s a tough one though. These contractures could have significant and devastating consequences to his physical development as he continues to grow.
The reality is though, I can’t change them.
The positioning of his feet is so severe that the only possible way to correct them would more than likely be surgery but with a child that’s almost guaranteed to be non-ambulatory, it would be neither in his best interests or worth the risks for this type of surgery to be carried out.
Not unless he ends up in an unbearable amount of pain.
So this leads me to where we find ourselves now.
A few months ago I begged and pleaded with our physiotherapist for help with getting some shoes that would both be comfortable for him but also reasonably easy for me to put on.
When I say reasonably easy I mean it can take me up to 20 minutes to put a regular pair of shoes on him and even then it’s evident by looking at his facial responses that he is far from comfortable or happy.
A referral was sent to our local orthotics team and an appointment was arranged.
I found myself being entirely listened to, heard and understood during the appointment and whilst I grasped there would be no real therapeutic benefit to a pair of shoes being specially made, this was still hugely important for me.
More-so for the social side but whilst also ensuring protection and warmth for his feet.
So with a couple of minor setbacks caused primarily by recurrent leg fractures and his appointments falling at times when he was in a leg cast, his shoes have now been made.
They are still having the final finishing touches made to them following the fitting just a short while ago but they look amazing.
Not only that, they’re easy enough for me to put on and most importantly, they don’t make him unhappy or uncomfortable.
I feel like I’ve been waiting for the moment where I can put my child in a comfortable pair of shoes for far too long but now we are almost there.
It might not seem like a big deal to most but to me it’s yet another stark reminder of how different our life looks, how many obstacles we have to face and how difficult some challenges are to overcome.
But we are getting there, one tiny step at a time.