Whatever you do...do not go home and google this!
That's what my pediatrician said. After watching this video clip. On my digital camera. And putting a name to the jerky movements. That I did not think were seizures.
Such simple words. Innocent sounding words. Words that should not be googled according to furrowed browed doctors. Words that would...in the unexpected blink of an eye...completely redirect and radically change the course of our lives. Forever.
Infantile Spasms. An extremely rare catastrophic form of epilepsy.
Our world was rocked to the core the day (November 16, 2007) that our 7 month old baby boy was was given a diagnosis. And of course I didn't listen to Dr. Pedi's white coated advice. I turned to the internet. And yes. Much of the information is starkly sad. But I also found stories of hope. And faith. And healing. And gut honesty. And so it was that shortly into this crazy journey...I committed to do the same.
That was a little over two years ago. So very much has happened over the course of these two years. So very much.
I can't promise you that every post is filled with joy. And acceptance. And laughter. And peace.
The fact is. Some days I rage. And sob. And fight.
I am...after all...just a mommy. Madly in love with a hero. Disguised in a little boy's body.
What I can promise you...is that I always strive to share our journey with honesty. And grace. And...I've been told...humor. And prayer...that at least traces of Hope can be felt.
And so I invite you to come. Explore the links. Sift through old posts. Fall in love with Trevy. With our family. It is my heart's deep desire that as you walk alongside us you will find hope...comfort...and heart connect...
Curious about how Trevy is doing today? Click here.