I made panini sandwiches for lunch today. It’s one of our favorite weekend lunches. It was the first time in a year I’ve made them. I pulled out the panini grill, cooked some chicken, sliced some delicious rosemary bread, cut leaves of fresh basil, and assembled the sandwiches. While I was cooking, Liam happily ate a grilled cheese sandwich with no protests…he ate like any 3 ½-year old would do with no cajoling, begging, or pleading. Larry was reading a magazine and talking with Liam. Ella was taking a nap. Liam was talking about how he’ll ride a school bus when he gets bigger. It was a totally normal scene, except for the fact that I couldn’t initially find the panini grill because my kitchen was rearranged by my mother to deal with her nervous energy after Liam was diagnosed!
It’s a beautiful day, this Super Bowl Sunday. And it is so, so, so great to have a just a typical day. Everything from the outside looked “normal.” It could have been except for the little gremlin that is permanently mounted on my shoulder whispering the words, “cancer….cancer….don’t take anything for granted….cancer…cancer…live in the moment…cancer…cancer…bloody, awful cancer.” The gremlin is always there. Always. No matter where I am, what I’m doing, if I’m with Liam or not, that gremlin is there. We haven’t talked about it, but I’m pretty sure Larry carries that gremlin too. It’s what makes us determined to keep doing whatever we can to raise awareness and money and make sure that progress is made. It also in a strange way has strengthened our relationship…we are on the same page of needing to effect change in any and every way we can. We have to. Too many precious lives are at stake, including my own precious son’s.
I don’t normally do this. I don’t normally talk about the other warriors...not because they aren’t constantly on my mind and with me…they are…constantly. But cancer is a very personal thing and I would never want to violate another family’s personal space by saying anything about their child. At the same time, it’s the names and faces of all the children we have met along the way that literally puts fire in my belly. I can feel the fierce Leo coming out in me and a desire to do everything I can to protect those children by shaking every tree I can to raise awareness. At times I’m angry…very angry that pediatric cancer doesn’t receive more support from either drug companies or the government. Can we not catch a break anywhere? But I try to kept those feelings to a minimum…they don’t do me or anyone else any good. And then I think about the mother who I’ve known since the early days who I recently saw and had a silent communication with as she excitedly pointed to her daughter’s new hair. I know how she feels. Every time I kiss Liam’s hair, I let the softness of his “new” hair brush my lips and drink in the feeling.
The faces of every child we’ve met are permanently etched in my memory. When I haven’t seen a child for too long or hear of another one who is in Vermont receiving a different treatment option, I worry and wait and grow even more determined and also sad that I can’t do enough, fast enough. Many nights I awake with a start realizing I’ve been dreaming about one of the children I know who is in the battle that I often refer to as D-Day. And the nights I awake in a cold sweat are the ones I know I was dreaming about Lillie, Grace, Beau, Lucas, James or one of the other precious children the world lost the privilege of knowing in the past few months. There are so many others…other people whose faces I recognize but don’t know the names of but know they’re on the same cancer “team.” One little boy who we have heard of but have not met is now at home with no treatment options remaining. My heart aches and breaks for him and his family. Please honor him by reading about him and while you’re reading, you’ll understand why we are determined to fight. Carter, I hope your days are free of pain and discomfort. Carter’s Mommy and Daddy, I would do anything to take this pain away…anything.