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.