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When hope returns to a life with epilepsy

Sara’s Epilepsy Story

When the children were babies, I was determined to breastfeed them. It was better, I was told. It was natural. You should do it as long as you can. I had friends who breastfed for two years. I was going to show my love by giving from my body. One morning, I breastfed my newborn daughter while sitting on the floor. With the pink furry Boppy wrapped around my waist to help hold her in place, the soft morning light crept through the blinds. I watched the air particles dance around and relaxed as she latched to my breast and the milk let down. I felt her rhythmic sucking and watched my body begin to deflate. Her small hand rested on the top of my breast lightly, tiny fingers no longer than my nipple.

Epilepsy and Parenting

I felt a pulse in my brain and wondered how much time I had.  Then I felt another pulse and knew. I pulled my daughter away from my body, breaking the latch harshly and laid her on the carpeted floor in front of me. So, I moved away from her, breasts exposed and leaking and waited.

Her surprised and angry screams brought my son running in, not yet three-years-old with white-blonde hair. Mommy is having a seizure! He yelled. Take care of your sister. Get Daddy, I thought over and over, trying to shove these thoughts into his mind through telepathy. Protect your sister.

Caregiver support

“Hope is the thing with feathers that perches in the soul” – Emily Dickinson
Artist: Haley Montgomery 

My husband ran in the room and when the seizure was over, everyone was still safe. He sat with me on the floor, held my daughter to my breast to finish the feeding while I sat staring zombie-like straight ahead, wanting to go to bed but needing to empty my breasts. I had gone from being a protector, a provider to a danger.

Five years, an ablation, an RNS implant, and two rather traumatizing EMU stays later, this is no longer the case. I have become the protector again instead of a threat to my children’s safety. The ablation interrupted the seizure network and made my seizures less severe. The RNS is slowly, slowly retraining my brain to communicate in a better way.

Time and Treatment

My children no longer fear being alone with me. Mommy doesn’t really have seizures anymore, they tell their friends. She has a computer in her head that stops them.

It takes time, my husband says, but they are getting better. Can’t you see it?

I can see it. I wish it was faster, but I can see the progress. A little bit of hope has returned and grows bigger every week, every month, like a light at the end of a long, dark tunnel. It is faint, but it is getting a bit brighter. I can see it now. I will stay the course, I will continue the fight.

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