What's with the Purple Ribbons?

Monday night I shuffled into Mya's room to investigate the 1:30 am dance party. Bernie was standing at her bedside holding a camera. She's smiling, he said. And I paused for the seizure. That's what a smile has been lately, the first presentation of a seizure about to take off. But it never came. We captured a smile during their 2 year-old photo shoot back in March, but don't recall seeing one since. This one was real.

For this Epilepsy Awareness Month I wanted to find some way to convey what it feels like for the millions of families living with Epilepsy. They say the Epilepsy is one of the least understood of the major medical conditions. If you have never lived it, it is hard to appreciate the highs and lows of a disease that has no cure and so profoundly impacts (arguable) the most important organ in the body. So I am settling on a re-post, because I think it captures so many of the things we are still dealing with today.
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Where was God the day the Devil was dreaming this up?

Let's make this condition and give it to those who already have an uphill battle.
Let's hand it exclusively to infants and toddlers.
Let's make it so devastating that parents choose medications with life threatening and life altering side effects, knowing they probably won't work.
Let's make it freeze the brain in its most important years of growth.
But let's not stop there, let's make these kids regress.
Let's take away the most basic of skills.
Let's make it so outgrowing it likely means growing into a new seizure type.
Let's call it Infantile Spasms so others think its not so big a deal.
Let's make it a really big deal.

I hope God was making butterflies or waterfalls or future brilliant minds that would some day cure disease. I hope God was fighting for this little girl to hang on to her smile.

My full post from last September
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I hate to say that I was right about the new seizure types, as we have added at least 3 more to the list in the last year. I wrote that post as we were rushing Mya's g-tube surgery because she was no longer able to eat enough. She was sleeping all of the time, and that feels very familiar these days. Her smiles were fading away, replaced instead with the stupor brought on by the constant refinement of medications. We are living that today as well. It is hard to feel like there is hope when this battle seems to always turn back on itself. I think that maybe a sleep deprived dad who would stop to grab a camera at nearly 2 in the morning means there is hope. We will never stop celebrating this child and what she is capable of even while fighting this disease. The purple ribbons are for kids like Mya.