The last time I wrote about Clarks Spina Bifida he was fine and dandy and symptom free. At 9 months he was sitting up, crawling and had movement in both his legs. Then about six weeks ago we noticed a sudden deterioration in his left leg and foot. He would pull up to stand and support himself on his right foot but his left he rolled over and couldn’t/can’t weight bare on it.
So we took a trip to the physio who told us it appears to be nerve damage. He has hardly any movement below the knee, zero movement in his foot and toes and doesn’t seem to have any sensation in it either.
We took him back to his Neuro Surgeon at Great Ormond Street who confirmed everything she had said. It’s obvious his spine has now tethered and we’re on a waiting list for an emergency MRI then detethering surgery as soon as possible.
So what became clear during these appointments is that nothing is clear! It’s unlikely he’ll regain movement in that leg but as for if he’ll walk independently or not no one knows yet.
Now something I read a lot from new and expecting parents of an SB baby is “Will my child have a normal life?”
Will my child have a normal life? It’s an impossible question to answer because having Spina Bifida is just a tiny part of someones life and who they are.
Some people in wheelchairs have an awful life. Some people who walk have an awful life. Some people in wheelchairs have an amazing life and some people who walk have an amazing life. You get where I’m going with this right?
To hear your child might not walk can seem heart breaking. When we first heard the word wheelchair mentioned I got so overwhelmed that I did a massive cry. Then I got home and I rationalised it. Clark will get around somehow, whether he uses his legs or a brace or crutches or a wheelchair only time will tell but he will get around.
For anyone going through this, for anyone with a diagnosis that is terrified. Don’t be. Your child can have an amazing, fulfilled, rich life even if they are differently-abled. Now don’t get me wrong parts of being a Mum to a child with special needs is gut wrenchingly awful – the MRIs, the sedation, the thought of sending him off for spinal surgery makes me cry every time I think of it (so I just don’t, serves no purpose to worry about something that isn’t happening right now) but trust me when I say the joy outweighs the anxiety in a massive massive way.
His determination, his pure joy, his devious little grin when he managed to pull himself up onto the coffee table and touch my precious things. He’s just wonderful.
The Spina Bifida? It’s the smallest part of who he is.
Will he have a normal life?
No definitely not.
He’s going to be absolutely extraordinary.