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 night before - preparing for Little H's gastrostomy


I'm trying to pack.
But I keep stopping and starting.
To charge the camera.
To watch the jubilee celebrations.
To type this.
My mind is disjointed. 
Thoughts forming and being pushed away.
I am struggling to concentrate.

I have tried writing a list: it says nappies, wipes, pjs, eczema creams.  They are in the bag already. There are too many nappies. And too many pyjamas too.  I've packed his fireman Sam ones, but they might be a bit warm, so I've packed the bob the builder short ones, but they might be too cold, so I've put in the long Bob the Builder ones too.  It's like the goldilocks of pyjamas in that bag. 

I've reached the end of the list.  What now?

It's not like we've never been to hospital before.  But we've usually gone in a flurry of sirens and flashing blue lights.  No time to worry. No time to think. No time to panic.

This is different. I have to plan. I have to think. 

And it's in a different hospital. 
I know my local hospital. I'm familiar with the staff, familiar with the routines. I know where to find the sheets, where the toys are kept, where I can get a coffee. I know what I need to bring and what they'll already have.  
We've not stayed here before. I don't know what to bring.

Of course, it's in the centre of town.  There are shops. Even if it is a bank holiday. We are only 20 minutes from home. If I forget anything it's not the end of the world. 

But then it's not really the packing that's worrying me is it? But if I focus on that. And on getting all the beds changed. And on getting the ironing done. And on mopping the floors.  And on making sure the camera is charged. Then I won't think of anything else.

And wont think 'what if ...'
And I won't worry about the anaesthetic.
And I won't hear the seizure monster threatening his return.
And I won't notice the sick feeling weighing heavy in the pit of my stomach.
And I won't remember that my sister died during a 'routine' operation.
And I won't notice how much my hands are shaking. Or how fast my heart is beating.

And I'll get the overnight bag packed. 
And I'll have such great big cuddles with my beautiful bundle of joy.

And tomorrow will come.

And this too will pass.

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