A Mom’s Journey With Epilepsy

My guest blogger today is Alysse Mengason, a writer who lives in a suburb of Detroit with her family. She writes the blog, Brain Thunders.  I met Alysse through twitter and am in utter awe of her resilience and ability to be so candid about her Epilepsy.  Alysse is a true and dedicated advocate for epilepsy, speaking out at conferences, making media appearances, as well as appearing on an episode of The Doctors, to talk about living with epilepsy and her Vagus Nerve Stimulator, VNS – Implant.  I was honored when she agreed to guest post here on Gone Bananas, in an effort to help spread awareness and get people talking about it! 

Thank you for sharing your story Alysse!

 “Children make you want to start life over.” Muhammad Ali
For me, that wasn’t possible in 2005 when our daughter, Hayden, was born. I was already more than two years into this crazy journey called Epilepsy, and my husband, the person you could call my ‘main’ caregiver, and I had made the decision to have a child.
With the help of the talented doctors at Johns Hopkins Hospital in Baltimore, we were incredibly and undeniably blessed. She was happy, healthy…and simply gorgeous, if I may gloat. From the beginning, she was a perfect eater and sleeper; her personality and looks were a fine mix between me and my husband, Andrew, or so I was told by my Mom. For those first couple of years, I honestly didn’t really mind that I was the one with the illness and she was the healthy one. Or at least I convinced myself not to notice.
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My journey with Epilepsy has been a bizarre one. I was diagnosed in January 2003 after a battle with encephalitis and meningitis. At 32 years old, I had never really been sick in my life, aside from a few colds and the typical round of childhood chicken pox. Andrew and I were newly engaged, settling in to our new home in Maryland and planning our wedding. I was telecommuting in corporate PR with my company…a large automotive supplier in Detroit and working furiously on a huge meeting. I thought I had the flu and I was ‘taking care of myself’, or so I thought. We went to dinner one night, came home and hit the sack. Andrew woke up to me having a grand mal seizure and called 9-1-1. I proceeded to have a few more that night and slipped into a coma. The rest is history. Here I am, five brain surgeries later; a wife, mother and a woman who battles a serious neurological disease that has no known cure.
Now that she’s 5, in school five mornings each week, gymnastics, swimming, little miss social with her various play dates, and as active as a monkey who’s consumed three cups of coffee, I’ve begun to feel that sense of guilt. Does my illness affect her life?
This can’t just be felt by Moms and Dads with Epilepsy. I’m sensing there are others who have been struck with all kinds of diseases who tend to feel this way. I can’t drive, so I feel miserable when I can’t take her to her friend’s house for a quick play date. If I’m having a ‘bad day’ with a few episodes (seizures), I might have to lie down for a few hours, and my mood is everything but pleasant, so I fear she is suffering. The side effects from the anti-seizure medications sometimes make me moody, tired, short and not exactly a happy mom to be around.
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Still, she is my very best friend (fits and all), and I am incredibly proud that she is as resilient as she is. This is the child that has seen her mother endure five brain surgeries. Not many children at 3-years-old can watch her parent have a grand mal seizure and then talk her grandmother through (on the cell phone) what is happening, blow-by-blow. She has learned what seizures are and why I have them. We are completely truthful with her and she knows what to do when “Mommy has a seizure.” I’ve had family and friends advise me not to expose her to the difficult health issues in my life, ‘it might scar her and scare her’. But to me, shielding her from this part of my life…our life, wasn’t an option.
After all, we made the decision to bring her into our life and there certainly was no way to magically change my health situation, so the best approach for us was to make her a part of it. In many ways, I think teaching your child to understand and cope with your illness makes him or her a stronger and more courageous person. I have come to accept that not only is Epilepsy part of my life, it’s part of her life too.
Hayden brings home all of her artwork from Junior-Kindergarten each day and last week, there was a ‘car-painting’ that consisted of stickers and some very interesting renditions of pink cars. “What is this,” I asked with a smile.
“Well…it’s the pink car I’m going to ask Daddy to buy me when I’m old enough, so I can drive YOU around! Maybe when I’m 7!”
I couldn’t decide if I should laugh or cry.

 

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