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A Mother’s Day Story: On Being a Mom with Epilepsy

With mommy by Jessica K Smith

This anonymous personal epilepsy story was submitted to Living Well With Epilepsy by a mom living with epilepsy.

My life is the same as any other Mom. I wake up in the morning to my kids in my bed. Unaware of what time they have snuggled in next to me, meanwhile at least half of my body is off of the bed completely. A foot in my eye and a little hand grabbing mine… I wouldn’t have it any other way.

Mom Triggers

The difference in my case, however, is that heavy stress and lack of sleep are seizure triggers for me. A night of birthday drinks with my husband, little sleep and just being “mom” was enough to give me my first seizure in 2 1/2 years. It was a brutal reminder of what my life is and how I cannot take any of it for granted.

This seizure felt different. It was big. My mouth is chewed up so bad that eating and talking is tough. Feeling “normal” again, without pauses in my thought process or holes in my memory, has been hard to get back.

A Kid at Any Age

Everyone could feel that something was different. My own Mom hopped on the next flight out from Denver to take care of me all week. Brian had to travel for work, so I don’t know what I would have done without her. I guess I now realize being a mom, you will do anything for your kids…at any age (Thanks Mom).

Old Dogs Need New Tricks

Post kids, my body is different. I’ve been twitching in my lower extremities and my eyes, and experienced a few panic attacks. I attributed this just to not working out enough or getting older. A visit to my neurologist a few months ago had her worried that my Epilepsy was manifesting itself differently as I am getting older and old tricks just aren’t working anymore. She was proven right… unfortunately.

I hate medication. I hate the way it makes me feel, that it can cause issues in my mental clarity, energy levels or gaining weight. This was the first time since giving birth that my Dr. asked me not just to adjust my medication, but also to try the Ketogenic Diet. The high fat, high protein diet is going to be much more difficult than anything I’m use to. I’m switching from 500 mg/day of depakote DR to 1000 mg/day ER, plus the diet. This is a big step in my journey, it will be a tough one.

Mommies Adjust to Life’s Curveballs

There are a few other things that this seizure did for me. It solidified where my kids are going to go to school. I now know I cannot make a 20 mile commute to and from work every day. I am unable to drive for 2 weeks and feel lucky that this time it is only 2 weeks. As a result, I have taken a step back to look at what is important. My kids were going to be fluent in Japanese and I was going to give them an opportunity of a lifetime in an immersion school.  But, I don’t think that is the best thing now. I need to make sure I am close and there will be other opportunities. I now know this is the right decision. Lucky for me, Brian feels the same way.

Happy mother’s Day to all you mommies living with epilepsy out there.

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5 Responses

  1. Lolo Dago (@LoloDago)
    | Reply

    Epilepsy makes me appreciate all the little things in life. Thank you for sharing your story.

  2. Anonymous
    | Reply

    As a fellow mother with epilepsy, I thank you for sharing your story. I also know from first-hand experience that the sleep deprivation that comes with being a mother of young kids can be especially trying when you also happen to have epilepsy. After having gone 10 years seizure-free, in the first year of my son’s life I had 13 “grand mal” seizures. We’ve had to modify our lifestyle a bit (mostly because I don’t drive), but I am certain that to my kids I am not a “mom with epilepsy” but just the “mom” that they look forward to snuggling with at bedtime 🙂 I’m sure your kids feel the same way about you.

  3. Shealynn Walker
    | Reply

    Thank you for sharing your story. I am a first time mom… And I have epilepsy. I’m glad I guess I am one of the lucky ones and my seizures have actually gotten better after pregnancy. Within the past two years my seizures have reduced drastically (4-6 gran mal seizures a week to only 2 so far this year) after dropping all medications and pursuing alternative treatment. Being a “mom with epilepsy” opens up so many doors to fears that typical new mother may never even contemplate. It’s something thats hard to talk to people about that have never had to experience the fear, helplessness or even pain that accompanies the disorder. The voice for epilepsy awareness is so quiet, its nice to hear the stories of the women who share my path. For that, I am grateful.

  4. Danielle Hannah
    | Reply

    Thank you very much for sharing your story and Happy Mother’s Day to you too!

  5. Audrey
    | Reply

    Thank you for your story. As a married woman with epilepsy nervous about trying for a baby, it’s nice to hear a humbling story like yours. Also- I hope the ketogenic diet worked as well for you as it did for me. I have been on it for a year and a half and would never go back.

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