Friday, November 1, 2013

Since I HAVE to be aware...

November is Epilepsy Awareness Month.  We've been acutely aware of epilepsy for almost six years now since our daughter was diagnosed with Infantile Spasms at 7 months old.

In all honesty I would give nearly anything to NOT be aware of epilepsy.

To not be aware of epilepsy would mean that I never have to give Julia another dose of meds, and I could stop carrying emergency rectal valium for unending seizures everywhere we go. I would never again watch an EEG screen record spikes and events every ten seconds, and I would never, ever, ever again helplessly watch and plead to God while my daughter convulses on the floor for minutes that feel like years.

But since I HAVE to be aware of it, since there is a month devoted to awareness of my nemesis, I might as well write about it.

Epilepsy is a terrible, devastating and relentless condition. It robs children of their development, and adults of their freedom. Being blissfully ignorant of this monster sounds like a dream. 

But like so many things in life, out of the worst situation there can be inspiration.  I have to admit that as much as I hate epilepsy I've been incredible blessed by the people I've encountered as a result. Those living in an ongoing battle with epilepsy are the inspiration.

They are amazing. They are brave. They are heroic. If we have to be aware, let's be aware of them.

Day after day these warriors overcome enormous challenges and find ways to learn and grow and develop and connect with the world even as Epilepsy is doing it's best to own their brain. They smile and laugh and take risks never knowing when the next seizure will temporarily claim their body. They are phenomenal and watching their fight is humbling to say the least.

I hate epilepsy. I want it gone. I want my sweet daughter, her precious little friends, and every person in this battle to be victorious for good. But because it is here for now, I will do my best to spread awareness of the brave warriors heroically fighting a battle they don't deserve to be in.

Let our awareness be in their honor!


  1. Thank you for expressing so beautifully my own heart thoughts that I can never seem to find words for.


  2. Laurie, once again, thank you for for sharing your thoughts. I am always in awe of your strength, your clarity and your honesty. God Bless all those who have to live with epilepsy and may he reach down and comfort and support your family. Xoxo

  3. So well said. May God continue to bless you for being such a wonderful Mother!