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As I sit in the garden, the warm sun beaming down on my face. I listen to the birdsongs as they speak to one another; the wind in the trees and the distant sound of cars as the world around me begins to awaken. It is the calm before our latest storm.

I can hear my husband playing rough and tumble with our children, him pretending to eat them like a monster and their giggles as he tickles their stomachs. I wonder - when will he be able to do this with Alfie again?

Reality sinks in once more.

Things will change again and be difficult again as we navigate this next hurdle. The trauma of our family being apart for the next five days. The worry as Alfie goes for his surgery. Every surgery has risks, but with a global pandemic, this surgery scares me more than any of his others. And then the healing period, where the wound is not left to mend with stitches and bandages. There is a tube direct to my child’s stomach that we will start using immediately.

What if the surgery does not work? What if it hurts him? What if I do it wrong? What if he pulls it out? So many what ifs and so much fear.

It is hard to feel positive and look towards the future at a time like this, at a time where my baby goes through yet another surgery. Another struggle he unfairly has to face at such a young age. The tender age of 3.

Many people get to old age without having to go through even a quarter of what he has, so why him? Why my innocent child? My perfect little boy with his bright blue eyes, beautiful blonde hair, and cheeky smile. His hands soft as a new-born and his toes still small and chunky. He is perfect despite all he has suffered and continues to go through, and he will continue to be perfect, but why should he have to go through this?

Despite waiting several months for this surgery, now the day is here, it is not something I want to face.

I want to stay in my little bubble with my family, yet I know that we cannot. Despite what feels safe right now, it is far from safe. As Alfie’s unsafe swallow cannot be seen without an x-ray, it is easy to pretend it does not exist. Yet the longer it is left, the more at risk he becomes. A hidden danger, waiting to strike.

Firefly Blog

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

Rebecca Highton

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I am a mum of twins, one has special needs. I enjoy blogging about life and the reality of parenting.

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