On Epilepsy and Avoidance

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 sons 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 that we have access to medicine for these seizures, and I am even more grateful that 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 really 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 and gross); but then I remember that I can’t actually sleep in the same bed as him, and that a sleep-deprived mom is a very 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.

3 thoughts on “On Epilepsy and Avoidance

  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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    1. 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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