Down the Rabbit Hole

We fell. Tonight. Just moments ago. After dangerous clusters of seizures. Rescue meds given and finally kicked in. She returned to sleep but I lie there feeling the defeat of yet another cycle of hope and despair.

And the tears rolled down. The sobs wracked my body. I buried my face in the pillow to stifle the sound.

Because when she drops I don’t know how to not fall down the rabbit hole too. I always climb out. But I’ve not yet learned how not to fall.

I can feel it happen. My heart. I feel it tumble. It lifts briefly to my throat, choking me, and then it falls from my chest to a pit in my stomach, to a weight I can feel in my feet trying to root me to this moment. But I won’t let these moments be the ones that define us.

So I reel it back up, hand over hand, inch by inch, clawing my way out by fixating on finding the next place to put my hope. To direct my energy. To fight for a better life for a girl who deserves the world at her feet instead of on her shoulders.

This photo looks like a happy girl. It’s an ironic twist of fate that it is actually a seizure pulling the muscles of her mouth into the resemblance of a smile.

2 thoughts on “Down the Rabbit Hole”

  1. I know this exact feeling, with the heart and the throat, and the sorrow that you continually dig yourself out from under. The seizures are relentless and such an unfairness. We even made the very scary decision to do a corpus callosotomy in our girl, and it didn’t help. So on we go. Us moms. Just didn’t want to let this post go by without letting you know that I understand, and am grateful for your words.

    Liked by 1 person

  2. Thank you! We did grids and strips and 2 resections just over a year ago. Still searching for that miracle! Until then… baby steps and thankful for every breath. Even the ones with a heavy heart.


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