“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.
We held the fundraising concert in July 2019 at 6:00 pm so Cody could attend it. It had been a stressful few months since scheduling the concert. My husband had had open heart surgery 9 weeks earlier, and I had just gotten off crutches 3 weeks earlier because I tore my calf muscle in February.
I so desperately wanted to dance – needed to dance – at our concert that, in June, my physical therapist started giving me PT exercises that simulated dance steps.
I danced at our first fundraising concert.
A concert to raise money to support the Epilepsy Foundation of Minnesota.
I danced with my son.
My son who has epilepsy.
Two years later, we have held two more concerts as fundraisers for the Epilepsy Foundation of Minnesota.
Cody and I had been dancing to a song of Jason’s titled “Every Moment Belongs” for months before our most recent show. That was going to be our song at the concert.
Then I developed vestibular migraines.
Vestibular migraine means you have the pain of a migraine with extreme vertigo and nausea as well. I was so sick four days before our show that I sat on the front porch trying not to cry, realizing there was no way I could dance Sunday night.
The day of the show I packed Tylenol and motion sickness medication just in case I got sick during the concert set up. I didn’t mention dancing to Cody, thinking maybe he’d forget.
But once the concert started, Cody leaned over and whispered, “What’s the name of the song we dance to, mommy?”
“Every Moment Belongs.”
A few songs later, Cody asked “When does he play our song?”
“It’s the last song.”
And again after a few more songs, “Where do you want to dance, that corner or that corner?”
I pointed to where we could dance…and leaned down to pull the Tylenol and motion sickness medication from my purse.
I danced at our third fundraising concert.
A concert to raise money to support the Epilepsy Foundation of Minnesota.
I danced with my son.
My son who has epilepsy.
I will continue to mourn what epilepsy does in our lives.
But I will also continue to dance because of what God can do with epilepsy in our lives.
Get out of bed
And dance with Me today
Leave behind the dark
The known, the safety
Being enclosed
Step through into the sunlight
Be radiant
As the weight falls off and flutters behind you
Take My hand
And dance with Me today
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