In the 20 months since Toby got sick, Stephen and I have watched 30 children die. They are children we shared rooms with and children we came to love through their parents’ writings. Their names are Gus, Jack, Max, Katie, Lillie, Lucas, Penelope, Brody. Their parents cope with unfathomable grief.
We think about death a lot, over here. It is forever knocking at our door, lingering in corners, forcing us to ask, “is today the day?”
Death has come into our life in an unnatural way, through the wide eyes of a beautiful child, disguised in creamy skin and laughter that sounds like bells. Death winks at the most horrifying moments. Like when Toby says, “Next August 26th, I want to come back here (the beach in Sanary-sur-Mer, France) and do exactly what we’re doing now, ok mommy?”
Recently I saw an old, dear friend. We haven’t been in touch since Toby got sick, she lives overseas, but she reads this blog. She was the first person in 20 months to ask if we think about Toby’s death. It took my breath away and I laughed with relief. Yes, we do.
But we also focus on the joy of each day. We stare death in the face, make tea, eat chocolate, plant flowers, tickle each other and spend a lot of time playing with trains on the playroom floor. We are fully present, grateful for our children, our family, our community. Death be damned.
So now you know what we think about. And if I haven’t scared you away yet, perhaps you want to help. I have a simple way, and I’m not kidding: Buy Cookies.
Cancer kills more children than any other disease. I’ve said it before, but time is running out for our kids. Every 16 hours a child with neuroblastoma dies. And lack of research dollars bars the way to a potential cure. By buying cookies, you can help to level the playing field. Please visit cookiesforkidscancer.org, order something delicious, and give our children a chance at life.
Ed Clark, Christmas Guest
9 months ago