Wednesday, March 13, 2013

Helpless is the New Normal

Sometimes there's a warning. Spasmodic muscle activity, exaggerated startling at sudden noises, and panic are signs that a epileptic seizure is imminent. People who have seizures say that before one hits, a nausea-like sensation starts in the stomach then rises in waves through the chest and head. Sometimes consciousness and awareness are affected, sometimes not.

Sometimes there is no warning. Allie's little body seizes suddenly and violently in the dead of night or during school or at play. She’s been having seizures for over five years – ever since she emerged from a coma in a San Francisco pediatric intensive care unit.

Allie has brain damage so seizures are a part of life. An assault against her at ten months of age resulted in an oxygen deprived brain and coma that lasted ten days. She emerged from the coma as a quadriplegic with cerebral palsy. Since then, she's had seizures.

We’ve tried at least six different medicines to manage Allie's seizures, but we haven't had much luck. She used to have about one seizure a month. Now she has them in clusters of three in an eight hour period just about every three days.

There is nothing like the helplessness you feel when your child is having a seizure. We used to panic. Now we pray and provide as much comfort as we can. We let her know that we are there with her. We just say, "It's okay. It's okay, honey," over and over.

But it really isn’t okay. You want to give any solace you can to your child, but, actually, you are out of control and are tempted to totally lose it – you wish, sometimes, you could give up and let go. You just want to totally give in to the nervous breakdown lurking just around the corner. But you are here for your child and your spouse and you're bringing whatever comfort you can. You walk through it. You hold their hands. You pray. You go through it and when it's over, you just rock her and let her rest and maybe fall asleep on you. That's what you do. That’s your life now.

This is our normal.

Sometimes, we have company over. In the middle of dessert, out of nowhere, Allie shrieks as a seizure takes hold of her. Our poor guests are shocked, speechless. To them, this is not normal. It's terrifying.

Our normal is someone else's terror.

One of us, usually Susan, comforts Allie, and I comfort the company.

1 comment:

Trip Kimball said...

Most of us live a sheltered life... behind our computer and TV screens, behind our doors, behind whatever other facades we erect.
Reality has a way of breaking in at the most inopportune times.
Thanks for sharing.