Sunday, July 22, 2012

Angels Wings

Ya know how you are always trying to figure out what to do with your life?  Whether you are doing what God meant for you to do and all that stuff?

I have been holding that conversation in my head for over 46 years now.  Yes I'm pretty sure knowing me, I was thinking that as I discovered my toes for the first time..."now what can I do with these?"

The self speak over the last 20 months has been "what am I supposed to do with the life that has been thrown at me?"  It's not bad enough that I  am pretty sure I am lapsing not only in the world of a faithful witnessing christian, but now I'm adding to it epilepsy advocate? Let's just set that bar up to the moon why don't we!

While on vacation recently, I pondered what to do with all this frustration over losing Josh to SUDEP and how betrayed and angry I have felt over not getting "the honest picture" of epilepsy from the doctors who cared for Josh.  This epilepsy is pretty darn serious!!! Epileptics and their families have to deal with the life changers that come with  a condition that can black out parts of your memory following a seizure,  make driving illegal, and can kill you.  All the while educating the public, including classmates and colleagues, that you are normal and can live a normal live. 

So back to what keeps holding me back:
My inability to control my tears at the mention of our story
Working full time in a demanding position
Raising two teenager girls
Exhaustion and Grief
Fear of the Unknown

Excuses!!!  I am finally getting to the place where I am edging a toe or two into this arena, with every newly diagnosed family I hear from, and  the ever present lack of common knowledge and surprised expressions from those who learn my child DIED from epilepsy.


The turning point came in the form of asking Josh for guidance during a peaceful walk on a shell-less beach and suddenly looking down to find a perfect set of angel wings shells.  If that wasn't enough, I returned to the house that evening and received the link for the Partners Against Mortality in Epilepsy (PAME) conference video remembering those lost to SUDEP along with quotes from family members such as yours truly.

Immediately upon our return home, I answered an invitation to join forces with the great folks at the Danny Did Organization to raise awareness and funds to purchase seizure monitors.  I also stepped up my involvement with the First Annual Joshua A Newman 5K run coming up in November.

The things above haven't changed, it's just me who has put all those fears in my pocket, said hundreds of prayers to get through each moment and gotten in at least up to my knees.

Alone I will do nothing, but with God's help, the canvas is wide open.


Here is the video:

Making sense of SUDEP
http://www.youtube.com/watch?v=HSVqUQAWhVY&feature=plcp.

Hugs,
Sherri

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