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In the Nighttime Mind of a Parent to a Child With Epilepsy

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I’m doing everything I shouldn’t be doing and nothing I really want to do. I am a master of mindlessness and avoidance, and it’s all I can really muster at the moment. I have decided numbing myself with social media, news and politics is preferable to cleaning my house, researching epilepsy or contemplating my son’s recent diagnosis.

It’s been 10 days since we found out our son has epilepsy. I am relieved to have a diagnosis after two solid years of testing and re-testing and wondering. I am grateful we have access to medicine for these seizures, and I am even more grateful he seems to be adjusting well to the meds. I am.

Other relevant stories:
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Can Flashing Lights Cause Seizures Without Epilepsy
Can Students with Epilepsy Participate in Sports

But when night falls and life quiets down, I begin to think about things a bit more. And by think, I mean worry. Nighttimes are the most challenging for me. In these quiet and calm moments, I am overcome by the urge to pull him into bed with us for the rest of eternity (or until he thinks that’s just weird); but then I remember I can’t actually fall asleep in the same bed as him and this sleep-deprived mom is a bad mom. So instead, I sneak into his room, crawl into his bed and lay next to his little body.

As I lay there listening to him breathe, I wonder what is going on in that amazing brain of his and why it is doing what it’s doing. I wonder if we will ever truly understand the why. I am thankful for his breath. I can’t help but wonder if it will always be there. It’s unbearable to think. But I am a mother, and mothers contemplate these horrible and difficult things.

I take a deep breath to bring my mind back, back to his breath, back to the warmth of his body. And there in the darkness, every hard moment of parenting this little guy and his twin brother has melted away. Every joy has magnified. Instead of feeling overwhelmed by the responsibility of having this child with a seizure-firing brain, I am just happy to have him. Happy to be his mother. Happy to watch him grow. Happy to listen to him breathe.

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? Check out our Submit a Story page for more about our submission guidelines.

Originally published: June 7, 2016
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