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Special Needs Parenting: When you’re stopped in your tracks

Special Needs Parenting: When you’re stopped in your tracks

The conversation that follows feels like a punch to the stomach, winding you.

Emotions all over the place.

Replacing the receiver, hearing the words over in your head.

It was good news today for once.

Our application for continuing healthcare support was provisionally agreed at a meeting this morning. Our lovely community nurse who’s been with us since Sam was 14 weeks old called as soon as she heard. Good news.

So why can I not stop crying?! It’s very simple.

It’s because I am sharply reminded that while I see him as nothing more than a wonderful, perfect child, the reality is that he is a very poorly one.

Uncontrolled epilepsy is deemed to be when someone has more than a couple of seizures in a month; Sam has around 10 daily. We’ve just gotten so used to coping, to managing the situation, that its normal to us and when reality bites it doesn’t just nip. It takes chunks out of us.

I’m so relieved that we’ll finally get the support we’ve desperately needed for so long, and heartbroken that we need it at all. I’m winded by the tidal wave of adrenaline surging through my body currently, my legs are shaky, and I can’t think straight.

All I want to do is get in my car and drive as fast as I can home to scoop my child into my arms and tell him just how much I love him.

So he’ll never, ever be in any doubt that he is my world.

That I don’t love him in spite of his difficulties, but that they make me love him so much more than I ever imagined possible, because I see his strength and love of life in the face of all his battles.

I see his courage.

I could do with a good dose of that right now.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Carolyn Voisey

Meet Our Blogger

Mum to one incredible little dude, I work full time in higher education and have my own small business as a jewellery designer/creator. I love nothing more than having time with my family, being outside and with my animals (chickens, cats, dog..!). While I love my work it's not an easy juggling act, and on occasion things can go wrong in truly spectacular and often funny ways...

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