Additional Needs

The Struggle is Real

Posted by Carolyn Voisey on 1st February 2018 Additional Needs, Advice & Support, Disabilities

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What started out as a bit of a cough and snuffle has rapidly developed into a very nasty bug indeed; he’s already on antibiotics for an infection and we are horribly aware that if he doesn’t show signs of picking up soon then IV’s will be necessary.

This is not a route we would like to go down, mostly because I don’t want to see my boy that poorly and secondly because Sam hates having IV’s (he’s brilliant at removing them… honestly, it looks like something small has been slaughtered).

While we can do something about the bacterial infection, a virus just has to run its course; calpol and ibuprofen being dosed regularly.

But one thing we have no control over are Sam’s seizures. Today my poor, poor little chap has been battered by them.

As we’ve entered the evening, my boy is twitching, jerking and lashing out with the seizure activity, tears rolling down his beautiful little face. And I am utterly powerless to do a d*mn thing about it to help him.

For all those who love someone with epilepsy or any other form of seizure, the struggle to know how to help is most definitely real.

Its times like this when you realise the comfort that a cuddle from Mum or Dad can bring – Sam loves his cuddles, always has, and while Mum is usually preferred for general snuggling, I struggle to hide my emotions seeing my boy suffering like this, so its Daddy he wants to be held by.

Daddy is his hero; strong, calm and always there when he’s needed.

I read something on Facebook the other day, the nights are long but the years are short.

And its spot on; when my child is unwell, frightened, or just sobbing and I don’t know why or can’t help, the minutes drag by like hours and the hours feel like days.

And yet, in a matter of weeks my tiny, early baby boy will be 7 years old. It only feels like yesterday that I first held him, utterly exhausted after 13 hrs of induced labour but completely elated and helplessly in love with this little person.

It doesn’t matter if you’re the parent of a medically fragile, complex little warrior like Sam or a neurotypical, healthy child; the strength of a parents love can move mountains when needs be.

But this evening, I’d settle for being able to comfort my little boy so he can finally relax enough to get to sleep.

The struggle may well be real, but even superstars and their parents need to sleep, sometimes.