When you are the one living with Epilepsy, but your child is healthy…how do you cope?

“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 conscious decision to have a child.

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 both a fine mix between me and Andrew. For those first couple of years, I honestly didn’t really even notice 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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Now that she’s 4, in school five days-a-week, gymnastics, swimming, little miss social with her various playdates, and as active as a monkey who’s consumed three cups of coffee, I’m beginning to feel that sense of guilt. Is my illness bringing her down?

This can’t just be felt by Moms and Dads with Epilepsy. I have to be sure that 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 playdate. If I’m having a ‘bad day’ with a few episodes, I might have to lie down for a few hours, and my mood is everything but pleasant, so I think she is suffering. The side effects from the anti-seizure drugs sometimes make me moody, tired, short and not exactly a happy Mom to be around.

Still, she is my very best friend (toddler fits and all), and I am incredibly proud that she is as resiliant 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 ‘boo-boos in the brain are and why Mommy has them’. 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…make her a part of it.