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 Unwelcome Visitor

Epilepsy made a sudden and unexpected late night call to our house last week.  He hadn’t been invited and I think it was a bit rude to turn up unannounced at 10:30pm while I was enjoying a glass of wine and watching The White Queen.  It was sneaky, I think, to wait until the one night that I’d put Little H to bed without the SATs monitor on but I caught Him on the video monitor all the same.  Little H had had a lovely day at the farm – laughing at the noises the animals made, giggling when the sheep licked the food off his hands.  I’m not sure why Epilepsy wanted to spoil that.  But He was angry and came in with a vengeance I’d not seen in a long time.

He tried to take my baby again.  Three times Little H turned blue. Each time more and more navy than the time before.  His little finger tips nearly black from the lack of oxygen; the SATs monitor screeching its high pitched warnings.  I breathed life back into his lungs and begged him to come back to me.  It’s been 21 months since I’ve had to give Little H midazolam, I could barely remember how much to give – maybe that was why Epilepsy had waited so long; I’d started to become complacent, He thought He’d catch me off guard.  But I did remember, just in time and after four long minutes Little H gasped for air and Epilepsy left his body; weak and pale and breathing.

Little H slept by my side all night; the still and lifeless sleep of the heavily sedated.  I watched and waited; a lioness protecting her cub, ready to pounce should the predator return. And return he did, as the sun began to rise.  First slowly, but growing ever stronger, lingering longer and longer each time.  Trying again in the car on the way to hospital was a sneaky move, but I was prepared – oxygen at the ready.    

At the hospital, first in resus, then in the High Dependency Unit, sedative after sedative was pumped through Little H’s veins, trying to flush the demon out.  But time and time again he tried to take my son with him.

I prayed and I cried and I watched and I waited.  Not knowing what would be left of my son.  Epilepsy had ravaged his brain before – taking his beautiful smile.  It took H two weeks to open his eyes, months to learn to hold his head up again.  Powerless I waited to see what devastation Epilepsy had caused this time.

Once again though my baby fought back. 

Forty eight hours, twenty seizures, midazolam, clobazam, lorazepam and Phenobarbital, two crash calls, ‘bag and masked’ eight times, a collective total of 45 minutes of not breathing...

And this little beauty came back to me.


My brave and beautiful, wonderfully smiley, Happy Little H.



Comments

  1. Dear Epilepsy... you are not playing fair at all. Little H's mum is one of the strongest people I have the pleasure of knowing you wont beat her... so just don't even try! x

    Wonderfully powerful post Em x

    ReplyDelete
  2. Thanks Mrs K. Hears hoping Epilepsy takes note! Xxx

    ReplyDelete
  3. Aww and a beauty he is. Well done little H, what a brave boy.

    ReplyDelete
  4. Thank you. He is a brave little soldier :)

    ReplyDelete
  5. Lets hope that one day the world will have the answer to this dreadful monster. Keep fighting Little H and mum you are a very strong woman.

    ReplyDelete
  6. Oh I do hope so Elaine. And thank you xxx

    ReplyDelete
  7. Em, having a blog catch up and have tears for you my lovely xxx I'm sure you have no idea where you get your strength from at times but I'm damn sure your beautiful boy is more than grateful for it. Sending lots of future happiness to you and yours xxx

    ReplyDelete
  8. No idea how we manage Jane - I guess we do because we have to, And Little H more than pays us in smiles :D

    ReplyDelete

Post a Comment

Thanks for taking the time to read and comment.