Or as my niece used to say, “Miiiiiiiiiinnne” with big, blue eyes and a small, plaintive voice.  I swear, as a two-year-old, she had a whole legal argument in that one long, drawn out word.

Almost a year ago, I wrote about reclaiming the 8th anniversary of Cody’s epilepsy diagnosis on October 23, 2014, by hosting our fourth fundraising concert on that day this year, but, really, we had started riding the epilepsy rollercoaster August of 2013 – we just didn’t know it yet. 

Cody’s first, out-of-the-blue seizure was on my 40th birthday.  Well, technically, it was at 2:00 a.m. the day after my birthday but close enough. 

Because the ER doctor that night thought the seizure was provoked by a fever, we didn’t get an accurate diagnosis for another 14 months (and two more seizures). 

There have been minutes in the last eight years since hearing, “Cody has epilepsy” that were unbearably, painfully long, where I literally had a hard time breathing, and yet the years have gone by in a breath.

If I knew then what the epilepsy rollercoaster was going to be like and how long it would last, I would have spent those years living in terror instead of living each day growing in strength. Each day since then was needed to get me to today.  Carrie at Day 1 wasn’t able to do this for eight years. But each day has been like training, making me a little stronger. . .and a little stronger, so Carrie today can do this for eight years. 

I don’t want to but I can.

“Worrying is carrying tomorrow’s load with today’s strength – carrying two days at once. … Worrying doesn’t empty tomorrow of its sorrow, it empties today of its strength.”

Corrie Ten Boom

As we approach the 8th anniversary of the diagnosis, I am also remembering his first seizure nine years ago on my birthday, because it’s this month.

I remember that seizure every birthday.

The night of my 40th birthday my best friend from high school (actually from nursery Sunday school when we were three) came to my house with a huge present.  As I unwrapped it, I saw the most amazing cross made of old barn wood still lightly painted white.  More amazingly, she had made it herself.  For my birthday! 

That cross has been in my house for almost nine years but recently it jumped out at me. 

Actually, these words jumped out at me,

“I’m here. I’ve been here for all of it.”

I opened that cross about six hours before my son stopped breathing.  And it has been with me ever since.  God has been with me ever since – during that first seizure and the ambulance ride.  The terror.  Years of grief.

That 40-year-old?  She died that night…and a stronger version of her has come to life. That’s what this site is about: “As I come so alive that death is afraid of me.” It’s about new life.

“We can’t choose our circumstances, but we can choose what story our lives tell.” 

Ginny Owens, Singing in The Dark

So, for now, I will ride the story of the epilepsy rollercoaster – because it’s the only story I have.  It’s mine. 

While this isn’t the story I expected nine years ago, I have learned to accept it – most days.  I have also learned that there’s power in the realization that you can’t change the circumstance but you can stand up to it. The day you realize that you become a force to be reckoned with. You might still grieve but you are no longer utterly beaten.

Years ago, I was beaten down by a circumstance I would never choose.  This year, we choose to fight back with a concert.

And next year?  For next year, pencil in a party for late August. Because that will be 10 years of seizures for Cody. But it’s also my birthday.

It’s MINE!

And I’m taking it back.

Take any day and be alive in it. Nobody claims that it will be entirely painless, but no matter. It is your birthday, and there are many presents to open. The world is to open. 

Frederick Buechner, “Living the Day Out” from The Alphabet of Grace