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…

I wouldn't change you ... But ...

I love you with all my heart son, but if I could take away your epilepsy, I would.

I sometimes wonder who you would have been without it. Would you be sitting now? Would you be walking and talking? Maybe. Maybe not. Either way the seizures are still a hinderance in your development. I don't think I realised the damage they were doing until you lost your ability to smile. When you couldn't open your eyes and you couldn't lift your head, I thought epilepsy had taken all you'd got.

You smile all the time now, my precious child; but when you look at me with such fear in your eyes, it breaks my heart. I don't know what's happening in your brain, but I know you're terrified.  It's scaring you. I wish I could make it stop.

I'm not sure what's worse; the seizures that scare you or the ones that scare me. Seeing you go blue like that will never get any easier. Seconds stretch to  minutes, minutes feel like hours. I force the air into your lungs, breathing for you while your brain resets, praying you'll breathe again.

Epilepsy doesn't make you who you are my child; you are amazing and wonderful and beautiful and brave.

Your epilepsy defines me at times though- I am scared and frightened and angry and sad.

I love you my son.
But if I could, I would take away your epilepsy in a heartbeat.

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