Accepting My Child Will Never Walk

I remember reading, a few years back, about someone with cancer feeling inadequate because they weren't running marathons or raising millions of pounds for charity. They were 'just', you know, getting on, turning up for chemo, hoping for the best. I've read too about people who've become depressed (understandably) as the cancer has taken hold; felt like giving up. But those aren't the stories that make the papers; people don't want to read about that. They want INSPIRATION. Defying the odds... That kind of thing. Not just ... Well you know ... The everyday kind of suffering.  
I wondered how it would feel to have cancer and read about the people running 26 miles when you're barely fit to get to the end of your bed. Do you think 'fair play', or do you feel guilty, or unworthy, or maybe that you're just not trying hard enough?
Mind over matter and all that!
Hugh's undiagnosed condition has left his muscles very floppy. He can't walk or si…

Some days

Life with a disabled child probably isn't what you'd imagine. Most of the time it's just, well, normal. We do the same things that most people do- get up, get dressed, do the school runs ... Some things are more difficult- like manoeuvring a wheelchair sized special needs buggy down the steps at our house and up kerbs when someone has parked in front of the dropped kerb at the school gates again; and some things are easier - like getting a parking spot at the supermarket - the blue badge comes in very handy then. But day to day,the small but significant differences and the larger more obvious differences in our lives are just part of our new way of living.

Hugh not having a diagnosis is part of that normal. I once yearned to know what was 'wrong' with him, what the future might hold; but as time went on it didn't matter so much. He's just Hugh and what will be, will be. Yet not having a diagnosis does present with the difficulty of not knowing how his condition may progress; he might improve- gradually developing and gaining skills, or he might regress and deteriorate. Not knowing what is wrong, not knowing a cause means that anything is possible. It s a fear that many SWAN (Syndrome Without A Name) parents face. Conversely it is also a source of hope because, well *anything* is possible, and although unlikely, maybe one day Hugh will sit or stand or walk or talk... Who knows?

A little SWAN friend of Hugh's has been struggling recently, her seizures have taken a terrible toll on her and she has been moved from the hospital to the hospice to prepare for her end of life. She has just turned one. No parent, no family should ever have the discussion that they have had; are having. No one should ever have to face the reality of such a bleak prognosis. It is a stark reminder of the conversations we had when Hugh was at his worst, of the book I was given on how to plan his funeral, of the story shared with Sean about special rooms in heaven. No family should have to suffer that way.

I hope and I pray that this special little girl will make a miraculous recovery. I pray that her family find the strength to cope. And selfishly I pray that I will never again face that reality, though I know one day I might.

Most days our lives are just the same as yours.

Some days they are not.

Comments

  1. Sending oodles of positivity for Hugh's friend. Beautifully written as always xxx

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  2. Sending love and prayers that there'll be a turning point for Hugh's little friend and family.xx

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