My son Johnathan passed away October 1, 2016, due to SUDEP (Sudden Unexplained Death in Epilepsy) at the age of 12. I write this for him.
For those that are wondering. My Johnathan was born at 33w2d blue and limp via emergency c-section due to me developing HELLP syndrome. He was diagnosed with spastic quadriplegia cerebral palsy and infantile spasms early on. IS developed into intractable epilepsy that was finally diagnosed as Lennox-Gastaut syndrome at the age of almost 10. LGS is a rare form of Epilepsy that is treatment and medication resistant. In his last three years of life he experienced over 3500 seizures, most were convulsive tonic clonic also known as grand Mal.
I haven’t given up… yet.
Yet… I want to.
Life is not meant to be this way.
When something so precious is stripped away
You wonder what could possibly be left.
I haven’t forgotten your laugh…yet.
Yet… it’s getting harder to remember every day.
I reminisce through pictures of you
Trying to remember the way you felt in my arms too.
It’s starting to fade away.
I can’t lose you… yet.
Yet… Haven’t I already lost you?
Your innocent laughs and giggles are gone
And this house no longer feels like home.
My life has been completely upset.
You were my miracle, my precious big little man.
You were trying, yet I loved you still.
I would have carried you for hundreds of years
But you left me and I’m broken forever.
I can't identify with your loss because nothing like that has happened to me. But I believe my mother felt that way when I became paralyzed at 20. It's good that you can write about it. It will be a better when you can write about other things as well.
I don't know if your son's epilepsy was from birth or not. Those with epilepsy and those that love them are saddled with a severe problem throughout their lives. I certainly hope that a cure for epilepsy is found soon along with many other illnesses and conditions like my spinal cord injury.
My condolences for your loss. There's beauty in the sadness of your words. We lost twins which were born premature, and didn't survive. That was 37 years ago, and it still hurts today. The pain gets better, but it never goes away. I wish the best for you and your family.
Michael D.
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I don't know if your son's epilepsy was from birth or not. Those with epilepsy and those that love them are saddled with a severe problem throughout their lives. I certainly hope that a cure for epilepsy is found soon along with many other illnesses and conditions like my spinal cord injury.
Ron
Michael D.