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In the Nighttime Mind of a Parent to a Child With Epilepsy as seen on The Mighty

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.

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. Read the rest on The Mighty

3 Comments »

  1. Epilepsy is hard. It’s frustrating and heartbreaking and it makes you want to scream. My sister was diagnosed when she was in elementary school(she is now 24) and there is not a day that goes by that I don’t think about what she goes through on the daily. There’s [almost] nothing worse than finding out your child will have a lifelong battle that you could do nothing to prevent. BUT it is our job as a parent to stay strong and let them see that life is not over. We must be their strength. With time you will find that you simply have a new “normal” in life.

    Well wishes to your family.
    Xo

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    • Thanks for sharing about your sister. There are so many people out there who are directly touched by epilepsy, and everyone has been so wonderful and willing to share their stories. Peace to you and your sister.

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  2. Hey Jen, I read your post and I cannot imagine all that you are going through. And can I say- give yourself a break! You have a process to go through here and you need to go through it. You are an awesome mom and God loves Naaman so much that He gave him you to be his mom. You are just the right woman for the job. So do what you need to do (or not) as you cope. You are loved, my friend! If there is anything I can do for you, please let me know.

    Aletia

    Sent from my iPhone

    >

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