Additional Needs

Walking a Knife Edge

Posted by Carolyn Voisey on 9th June 2017 Additional Needs, Advice & Support, Disabilities

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In a matter of days, a little boy we love very much has gone from relatively happy at the weekend to seriously ill and in a dangerous condition in hospital.

He is one of my boy’s SN buddies, and over the past few years our two families have become close.

This is not the first time I’ve had to watch from the sidelines, unable to do anything tangible to help.

It's brutal and unfair, a 3 year old child should never have to go through what this little chap does.

Yesterday was difficult, my thoughts were all over the place thinking of my late Dad, what might have been for Sam if the seizures just stopped, and then later on chatting to this little guys mum over the internet, trying to keep my spirits up and going into full-on Mum mode (!); have you eaten today? When did you last have something to drink?

When you’re in the whirlwind of your child being seriously ill you forget the basics.

We live too far away to be much practical help, but at least the internet offers us to chance to make sure those we think of often are aware of it.

I lay awake last night, listening to my boy’s soft breathing as he slept. He looks so perfect and peaceful when he’s asleep.

You’d never know that a storm of epileptic activity is raging in his little head, constantly. But for all of it, he is happy.

I grieve the life I thought he would have had, and for what has been taken from him by the relentless seizures.

But when another child so similar to my boy is critically ill it’s impossible not to feel at least some of the helplessness that his parents are facing.

At least, thanks to the wonders of modern technology, we have the ability to connect with other parents, and to support one another through the grief and rough patches.

Even if we can’t do so face to face; in the SN world, there is always an Army at your back even if you don’t know they are there.  x