Saturday, November 07, 2009

Tomorrow's the Big Day




Tomorrow, we are walking and talking for Epilepsy. Joe and I, one of our daughters and two of our grandchildren will don the memorial t-shirts pictured above and go do something urgent and important. The rest of our family are out of town, but many people have assured us that they are with us in spirit.

I'm emotional about doing this. Shaky almost.

What am I feeling? First of all, scared. Scared of saying the wrong thing and frightening a vulnerable group of people. There will be children with epilepsy present, and I want their parents to know about the risk of sudden death without giving anyone nightmares. Can that be done? I don't know. I only wish someone had told us. So the Golden Rule tells me I need to say it. Knowledge is power, and I want to empower other families.

Second feeling: sad, sad, incredibly sad -- to be reminiscing about my son and our aching loss, and the fact that he is spoken of in the past tense now. To be wearing a t-shirt with his name on it. I hate that because it finalizes his absence.

Third feeling: Stunned. Our friends, in a wonderful outpouring of support, donated over $5000 to this cause. We continue to feel so very loved and carried by people.

Fourth feeling: Proud. Glad we are using our story to focus on a tragic medical syndrome that needs to be researched and cured. Hopeful of being able to help other families avoid our fate.

Fifth feeling: weak. tired. little. too small to make a difference. But marching forward through the open door in front of us anyway.

Pray for us...I'll let you know how it goes.

5 comments:

Elis said...

I'm so proud of you and Joe for what you are doing. We will be with you in spirit and I know your words are going to anointed by God.
Go Joe and Karen go!!!!!

Gannet Girl said...

Prayers going with you and surrounding you and your beautiful boy.

sharon said...

You both are such wonderful people and with each step you will feel God with you and what words come from your mouth will be fed by Him.
Happy walking

Jeri said...

Thanks for sharing. I'm so proud of your courage and I'm certain that God will use you in a mighty way. Much love and many blessings! Jeri

Maisha Bonnie said...

My heart is with you guys. I am so proud of you and I love you so much, just as so many others do! I know that your JJ is so proud of you too.
BIG HUGS