"The most brutal part about it is that one minute he's jumping over puddles and just a little boy alive with joy.
An hour later he's tired out of his mind and doesn't even know what day of the week it is."
This was Jonathan's summary of life with catastrophic epilepsy after Trevor's longest seizure to date. A seizure which forced us to pull off the road on our way home from our weekly family nature hike. A seizure which stole him away from us for four impossibly long minutes. A seizure which terrorized our hearts as we helplessly watched the drool pouring from his mouth while his body was under siege. A seizure that left us shaken the rest of the day. A seizure that forces us to face the unthinkable; complete the hemispherectomy. My heart is just so fragile and worn. I look over my shoulder and wonder how we found the courage to make that decision all those years ago. But then I remember it was much more hopeful then. My heart was much less sorrow drenched. I look at him skipping along the shore. I listen to him rattle on about this and that. And I think we just don't have the courage in us this time. All we could lose looms over our hearts with a weight more dense than words. Then he seizes like that and our knees give way and impulsively our hearts turn towards the nightmare decision that is radical brain surgery...again. We feel so isolated in our heartache; so numb. Catastrophic epilepsy is brutal.
2 comments:
My heart aches for you. I can’t even begin to imagine. I have seizures. I hate to even say it in the same post that talks about Trevor’s seizures. They can’t compare. And as scared and tired and out of it as I have felt, to know that poor baby has to go thru what he dies almost daily just hurts my soul. And Momma to Momma, all I can say is I have and will continue to pray for you all. No Momma should have to make these decisions. Bless you. And Daddy and brother and sister, too. It’s just hard. I hate the word suck. But I hate seizures worse. Seizures suck! Praying for you!!!!
Your words are so sweet and meaningful. You have a layer of insight that I don't. I only understand epilepsy from the caregiver role, so hearing your heart is really special. Thank you for sharing that with me. And thank you so much for praying with us. I have no idea what we're going to do, I just know this is so heavy and hard.
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