The life I never expected

Way back... Way back when... Way back when I didn't know how disabled Hugh was or would be... Way back when I didn't realise how destructive his seizures were... Way back when I thought the doctors could fix things... I thought,  I thought that once we'd sorted the epilepsy everything would be better, I thought that once we'd sorted the epilepsy I'd have to struggle to come to terms with having a child that needed to go to special school.
I didn't expect to have to come to terms with having a child that would be unlikely to live past his teenage years.
I didn't expect to come to terms with having a son that hardly knew I existed.
I didn't expect that, even once the terrible times had past, the devastating consequences would remain.
Hugh's epilepsy has robbed him of a future. Hugh's epilepsy has robbed us of the child he might have been.
His really bad seizures are less often than they used to be, And for that I am grateful, But they cast a long shadow, And I ne…

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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