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…

The end of Winter?




Here comes the sun!

It’s a glorious day here, the sun is shining, the birds are singing, there’s that smell of spring in the air and I can hear the Eager Beavers out with their lawn mowers already.  It’s the kind of day that puts a smile on your face.  In Little Mamma’s house, there is even more reason to smile.  Today is the day we start the Ketogenic diet.  Today is a day filled with hope and endless possibilities.  It’s the start of our exciting journey leaving the bitter winter of seizures behind; our chance to escape from the clutches of epilepsy. 

I don’t want to get my hopes up.  We have been sorely disappointed so many times in the past.  But I can’t quite control myself.  Epilepsy has been the big dark cloud in our lives for over a year now.  Each seizure Little H has is potentially life threatening and when they begin we have no idea if or how they will end.  He doesn’t have hundreds of seizures a day, like some poor children, but when he has them, he stops breathing, he turns blue and within a short period of time his heart rate drops dangerously low.  We live in fear of his seizures; they affect every aspect of our lives.  We turn down invitations to weddings for fear of them happening there.  We can’t get babysitters – who wants to look after a child when there is every possibility that they will stop breathing in your care?  H’s seizures are classed as ‘medically intractable’, that is to say that drugs won’t work for him.  After trialling a large number of them we’ve been told there is only a 2% chance his epilepsy will ever be controlled by medication.

Our lifeline then, our glimmer of hope, is this – the Ketogenic diet. There’s a 50% chance they will have some effect on his seizures – whether this be a reduction in frequency, severity or the Holy Grail – a cure – remains to be seen.  Imagine, Little H – seizure  free – oh how different life would be!

So today feels like the start of something special.  A new beginning; Spring after a long cold Winter.  My heart is fit to burst.

Please God let it work.

Little darling, the smiles returning to the faces
Little darling, it seems like years since it's been here
Here comes the sun
Here comes the sun, and I say
It's all right
The Beatles, Here Comes the Sun.

Comments

  1. the sun is shining here too. the crocuses are blooming and the daffodils are pushing through the earth. the day is full of the hope of the year - and i'm hopeful for you. fingers crossed it makes a difference; and if it doesn't make as much of a difference as you hope, if nothing else it will allow you to feel in control of something positive that you are doing for little h.
    x

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  2. Thinking of you and I hope that the diet works.You have nothing to lose by trying it. All my fingers and toes crossed!

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  3. Thanks ever hopeful mummy & Di, ffi gets crossed it will work. I'll be keeping you all updated.

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