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…

Don't Cry, Don't Panic

I don't cry.
I don't panic.
It's a fact I take some pride in.

Don't get me wrong, there's probably not a Disney film on earth I haven't cried at. I cry at songs. I cry at adverts for heaven’s sake.

But when it matters, when I'm needed. I don't cry. And I don't panic.

I sometimes wonder if I cry so much at other things because I've bottled up too many tears. Do all the tears I've kept inside when it's time to be strong spill out during the John Lewis advert? 

But I have to be strong.
So I don't cry.
And I don't panic.

I'll hold his face between my hands and tell him I'm here. I'll pull out the bag and mask, turn on the oxygen and squeeze the life saving air back into his lungs. I'll stroke his hair and I'll tell him it'll be ok.

But I won't cry.
And I won't panic.

The paramedics will arrive and I will tell them the shade of navy blue his face turned and I'll explain how his fingernails went black. I'll list his medications, the strengths, the dosage, the time of day they are given. They'll ask if I'm a nurse and I'll say 'no, but I've done this lots of times before'.

And I won't cry.
And I won't panic.

I'll grab a hospital bag and I'll throw in clothes for us both. I'll take feeds and medications as I know the hospital won't have them. I'll kiss my big boy goodbye, tell him it'll all be ok and take the teddy he wants his little brother to have. 

But I won't cry.
And I won't panic.

I'll carry his limp body, breathing softly, wrapped in a blanket, to the ambulance. I'll listen to the sirens wail and watch the blue lights reflect on the windows of the cars that part to let us through.

And I won't cry.
And I won't panic.

People ask how I do it. And I don't know how. All I know is that I mustn't cry and I mustn't panic.
Not yet.
Not now.
Not when he needs me.

But this time was different.
This time the lump in my throat was so big and so sore I thought I would suffocate. 
I couldn't swallow it down. 
And the tears leaked out.

His life in my hands and I had nearly failed him. 

Under the stark bright lights of the resus room, he lies on the bed, pale but breathing; motionless. The rigours and convulsions of the seizure gone now; this stillness deadly. Monitors beeping, oxygen hissing, the hustle and bustle of the emergency room all feel miles away. I watch his face, take his tiny hand in mine and whisper his name. The faintest of movements as his fingers close gently around mine. He's still there. My boy's still here.

A day later and it's like it never happened. He's happy and smiling and back to himself.

But me? It’s all I can do to stop myself from crying, to stop myself from panicking.  

The memory lurks behind me, a shadow, taunting me with the ‘what ifs’ and the ‘what could have been’. It's the weight on my shoulders, it's the voices in the night.  My heart beats so fast, I struggle to keep up. I hold my breath and have to remind myself to breathe. My jaws ache from teeth clenched too tight. I sit alone in the silent church and light candles. The rivers of tears fall, unabashed.  

I pray it'll never happen again, knowing without a doubt that it's only a matter of time. 

And when it does,
I won't cry,
And I won't panic.

 

Comments

  1. Emma, you truly are amazing. Your such a strong person, the strongest that I know. You are always there for him, and you never have and never will fail him. I believe things happen for a reason, and you were chosen to be his mum for all of you wonderful qualities, for both of your boys. Always thinking of you all 💙💗💙💗💙.

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    1. Thank you. Thank you for your kind words xxx

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  2. Amazing mummy

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  3. The hairs stand up every time I read this, the words get under my skin, bringing back so many memories and emotions. Beautifully written, you're an inspiration xx

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    1. Thank you LfBS, that really means a lot. Xxx

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  4. Hit a nerve here x x x beautiful piece x

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