November 26, 2012

Early Morning Seizure

Last night Evan curled up in my lap like he used to do when he was younger and somehow he folded himself up to fit. I wrapped my arms around him and found myself wishing I could envelop him in my love and make everything better. Make his seizures stop.

As a parent, you want to be able to help your children with the small problems and fix the big ones, but in this area we are powerless.

We can tell in the days leading up to a seizure that one is brewing, but this can last several days. We wait and sleep restlessly in anticipation of being jolted awake by our seizing child.

The seizure always lasts too long and the minutes pass slowly in the tense air of our bedroom. After several minutes it finally stops and we are relieved, exhausted and left feeling beaten. Sometimes we sit speechless in a daze, sometimes we cry, eventually we turn off the light and go back to sleep. There is nothing else to do.

This morning Evan had a seizure and he slept in to recover from it before going to school. This time he remembered having a seizure, but often he does not. He was a little wobbly when he woke up but and also had double vision. Once that passed, his spirits were high, as they usually are after a seizure, and he cheerfully had breakfast and got ready for school. For us, the morning after a seizure offers frustration, concern and that ever-constant feeling of helplessness. We follow Evan's lead and get ready for the day.

Tonight Evan is sleeping soundly and tomorrow will probably be a good day.

45 comments:

Anonymous said...

My dear,

Whenever I read your blog with your experiences it is as if it was I, as the feeling of helplessness is constantly with me as if I want to punish myself for my daughter's condition.
Epilepsy with her isn't as regular as your son's but having been born with tuberous sclerosis leaves us as parents to expect something horribly unexpected to happen at any moment in time.
Stay well and as positive as you can be and thank you for writing so well and sharing all your sensations regarding your adorable son.

My very warmest and kindest regards,
May you always be blessed to accompany him.
Milay Oliveira
Mother of Natasha 31 with TSC

Mary said...

Dear Lisa (and Rob),
You create vivid pictures that touch my heart. I've felt that tension, but only a small part of it. Some days I CAN forget.
I don't know how you and Rob do it, but you do! You are fabulous parents! You are fabulous people! And you're raising your children to be fabulous adults also. (They're already fabulous kids!)
Our love to all of you!

Mama Lisa said...

Milay,

Thank you so much for your heartfelt comment. I'm sure you have seen so many changes in the TSC world over the years. I do know the feeling of expecting the unexpected and I try t brace myself for the inevitable but it will invariably catch me off guard.

Thank you for your well wishes and please share my warmest thoughts with your family and Natasha.

Lisa

Mama Lisa said...

Mary,

Thank you for your compliments on our parenting and our children. Some days I think we do better than others! As for how we do it, there is no other path for us so we press on, but we don't do it alone! We have you to thank as well as your adult children, your siblings, your parents, my family, our friends, Evan's teachers, therapists and doctors and anyone else we can pull into the mix!

Lisa

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