Tuesday, February 19, 2008
Pay It Forward
Those are wires and probes coming out of my son, Jeff's head. He was 15 years old and a patient at Rose Hospital here in Denver. Born with seizures, but never labeled as epileptic, this was the summer (1995) that they took him off his "baby" drugs and put him on "adult" drugs. For about 6 weeks while there were insufficient levels of either drug in him....he had non-stop seizures.
I remember as a young mom, frightened beyond belief, sleeping on the floor next to Jeff's crib. I would sleep with my leg touching the leg of his bed. When he would have a seizure, it would shake the crib and I would wake up. Many nights I was standing with him in my arms before I was fully awake. Many nights I got less than 2 hours of sleep between his seizures. My greatest fear was that he would die during a seizure. Little did I understand that 25 years later, this is still my greatest fear. Yet I have learned that it will not be the seizure that kills him, it will be the environment around him.
I have also learned that I am not as alone as I once thought I was....back when my life revolved around caring for sick kids and nothing else.
One of my all time favorite scrapbook stores is Scrapbook Your Life! in San Diego. Liz and I met while I was teaching and she was playing on a cruise in 2004. How fun is that??
I'm not sure I remember the entire story, but something about fighting over a drink.......
Since then, I have spent many happy hours in Liz's store teaching what I know to her customers. Ok, I can't really call them customers because most of them have grown to be my dear friends over the years!
One of the things that bonded Liz and I is the fact that her daughter, Rachel, has epilepsy. There was an immediate connection between us....it just took us a few weeks to figure out what it really was.
Rachel is 15 now. The same age Jeff was in the photos above. She is going to take part in the National Walk for Epilepsy on March 29, 2008, and I am personally asking each of you to sponsor her!!! That is how we are all going to pay it forward!
Click here: Rachel Chiecuto
And then click under the photo on "support Rachel"
She has joined "The Crazy Brainwaves" and will be walking with Heroes' star Greg Grunberg who's son Jake also has epilepsy.
I want to make a special note about their by-line: "not another moment lost to seizures". My son, Jeff, had so many seizures and still does. He lost so much of his infancy that there is permanent brain damage. Moments that can NEVER be regained. But with research and walks such as this, there is truly hope that there never has to be another moment lost to seizures.
Rachel wrote that she cannot ride a bike, swim, or drive a car. These kids have to give up so much. Why not give a little back to them? Pay it forward. I can never get back the lost moments in Jeff's life, but I can certainly help prevent them from happening to another child.
Please support Rachel and this very worthy cause.