With each passing day we are witness to the relentless regression that makes his days and nights intolerable.

There are moments where I hold my breath along with him..and wait for him to breathe.
There are times he cannot keep his feet beneath him, falling.
There are times when the seizures threaten his life.

Sometimes when I look at him, into his eyes, I see the little boy who loved trains, riding his bike, who was smart, happy…


And then the reality of his days and nights come crashing in – the injuries, the risk, the seizures..

The fear.

He is twenty seven.

He has two younger bothers who ride a roller coaster of caring, loving their bother and trying to see him through the latest emergency, the latest seizure. They also hold my hand, help me make impossible decisions in love, in fear.

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His step dad, since he was three years old, has been completely and totally, Dad. He loves him unconditionally has spent long nights in tears with me, consoling me, trying to strengthen me and grieving himself.

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Our friends and family, care and pray for him and us. We are surrounded by so many people who love him, and us.

I am sure there are many of us who lay awake at night hoping he will be here tomorrow.

I don’t know how to express the absolute fear I have of the day when he is no longer here.
How will it happen.
Will he suffer.
What should we do.

What should I do?


He is so tired. I want him to grow old, healthy and happy.

We have grieved for what he has lost since he was six years old. But there has been so much joy. So much pride.

So much love.

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We just have to be strong, he depends on us. Above all else, he is loved.


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