A Tangible Face

This is a poem I had written back in March of this year. It's on my Facebook page, my poor forgotten blog from the summer, and, most importantly, it was printed on the backs of our Team Jamie-James shirts we wore during the Epilepsy Walk in Boston. Now I believe it needs to have a place in this blog.

This diet has brought us so much hope and the changes in James are just remarkable. Still though, when one of his seizures wracks his tiny body I can't help but somehow feel deflated. Not defeated, but deflated. I fill up with all the hope and good things that are currently going on and when a seizure strikes it's as though the wind has been knocked out of me.

That evil, silent stalker snuck into our house again, last night around midnight.

Between the medicines, the diet, and our other precautions, he just keeps finding a way in. It's as though we used to leave the doors unlocked and wide open for him to get at James. Then we started closing the doors. Then locking them. On to the windows. Close then lock. Then getting an alarm system. A guard dog (or 2). Slowly, but surely, we've been making it harder for him to get in.

But boy, does it sting when he manages to weasel his way into our home.

I wish Epilepsy wasn't a disease,

I wish it had a face,

So I could meet it sometime,

Just name the time and place.

I wish we could stand toe to toe,

I could spit forth my rage and hate,

instead I stand crib side silent,

and am helpless while I wait.

The silent sneaky stalker,

slithers into my house at night,

parents' sleep restless and fleeting,

baby's sleeping should be right.

I have no cure or answer,

worth trying, it's been done,

Epilepsy, oh hated face,

be gone and leave my son.

             

                         -Sarah Dodge

The back of our Team Jamie-James shirts.

Our walking team. Full of the most amazing people I know.

Mike, Liv, me, & James