Trevor was one of just seven patients to participate in a brain stimulation study (tDCS) at Boston Children's. The good news was the treatment was effective. He wasn't seizure free, but we noted significant reduction in intensity along with a decreased number of events daily. The less than stellar news is now that we're home we're watching him slowly spiral back to his baseline. The hope is that we'll soon be able to access the treatment at home, but we do not have a timeline on this.
The picture below was taken after a two minute seizure left him an exhausted postictal mess for hours. He's often sleepy after the larger events, but this was the first time he actually fell asleep.
As you can well imagine, our emotions have been a swinging pendulum.
Across the main road and up the hill sits a cemetery. If you're brave enough to trudge up to the top of that cemetery hill you'll find one of the most breathtaking views of the East Bay. It's a favorite walk of ours. Especially of Trevy who enjoys riding in his wheelchair and letting us do most of the work.
He convinced his dad and I to take a walk up there last night. It was a beautiful evening. We enjoyed chatting with neighbors along the way. Mr. Tony, who visits his wife's grave daily, is always a joy to visit with. Trevor loves him. Trevor loves everyone. It's his super power.
There was a large package on our steps when we arrived home again. Inside we discovered an amazing saucer swing. A gift from a thoughtful friend who knows that Trevor derives great joy from swinging.
My heart caught a little as I noticed how these two pictures so poignantly capture this epilepsy journey we've been on for so long. Our hearts have endured moments of bone wracking sorrow only to be followed by unbridled joy. He wants to live. A truth my heart processes daily. A seizure attacks and he's laid flat for hours. My heart groans. The whole earth groans. He finds his courage and energy to rise and smile again. The sorrow of this broken world which lays heavy on me only holds him loosely. It's a gift of disability. He swings high. I see a partial glimpse of the Joy that lies on the Horizon. I find myself wondering if there will be swings in Eternity. Surely he'll saucer swing with Jesus and King David. Without words he reminds me that it's okay that he wants to live, to taste the future joy, even as my heart groans and sighs "even so come".
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