Finding breath and beauty amidst the storm

Tag: epilepsy

Dance with Me today

“We tend to stay away from mourning and dancing. Too afraid to cry, too shy to dance…we become narrow-minded complainers, avoiding pain and also true human joy…While we live in a world subject to the evil one, we belong to God. Let us mourn, and let us dance.”

HENRI NOUWEN, Suffering and Joy

Cody met his favorite musician at a 5:30 pm Q&A one night before a show.  We attended only the Q&A because the show itself was past Cody’s bedtime. Staying up too late triggers his seizures, so we are very strict about bedtime. 

When I emailed the singer, Jason Gray, a month later, he remembered us and agreed to play a concert for us as a fundraiser for epilepsy.  He remembered us after the Q&A specifically because we hadn’t been able to stay for the show. 

Epilepsy prevented us from attending his show; epilepsy made us stand out to him.

The joys of summer camp

What do you think of when you hear “summer camp”? Fun things, right? Games. S’mores. Bonfires and singing. Staying up late. For parents of kids with epilepsy, we think…well, feel is maybe the more accurate word…we feel anxiety. Morning and nighttime medication doses. Rescue meds (Valium to stop seizures that don’t stop on their own). When campers stay up too late, we worry about seizures, maybe in the lake while our child is swimming.

Enter Camp Oz and the Epilepsy Foundation of Minnesota!

What are you choosing today?

A few months before Cody was diagnosed with epilepsy, a friend told me about a book called One Thousand Gifts.  The author decided to try to record 1000 gifts from God in her daily life.  After reading the book, I started my own gratitude journal, keeping track of the gifts that God had given me the day before.

I have recorded at least one thing to be grateful for every day since then even when I didn’t feel like there were any.  While I have recorded considerably more than 1000 gifts, it hasn’t always been easy to do. Only now as I pull it out again do I even realize there is a subtitle:

Panic attacks & promises in a pediatric neurology clinic

A horrible noise jolted me out of sleep – and it was coming from my son lying in bed next to me.  It was a few days after Cody’s 4th birthday; he had also done this a few months earlier, making terrible choking sounds in his sleep, which stopped after about a minute.  Cody had had a febrile seizure (one due to a fever) when he was 2, but these two recent events were different: no fever, he (thankfully) did not stop breathing after it, and he regained consciousness once it was done. 

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