Having a child with special needs affects the whole family.

Having a child with additional needs changes a family.  I think you become more insular as no one can truly understand how much your life has changed.  We are not the same people, same couple, same family as we were before our special boy, Hugh, was born.  Our priorities have changed.  Our needs have changed.  Hell, even our political views have changed.  It’s not all bad though.  Yes, I am beginning to feel isolated from even my closest friends, but in turn, we have grown stronger as a couple, talk more openly and rely on each other more.



My overriding concern has always been though, the effect having a brother with special needs will have on my eldest son, Sean.  He is nearly three and I worry almost as much about his future as I do about his younger brother’s. Will he get bullied for having a brother that is so ‘different’?  Will he feel neglected because his brother demands so much care and attention?  Will he be embarrassed by a brother that can’t walk or talk?  Will he be jealous…

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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