Tonight's picture was taken in August of 2008. Mattie was beginning his first cycle of chemotherapy, and we were getting acclimated to spending time in the Lombardi Pediatric Cancer Clinic. Jenny and Jessie (his art therapists) had the brilliant idea of allowing kids to paint the ceiling tiles. Mattie thought that was a phenomenal idea, and jumped at the chance to paint a tile. Naturally in light of his Scooby Doo phase, we created a tile with the entire cast from Scooby Doo. However, this was not the only ceiling tile Mattie worked on during his long and extensive treatment process. In fact, Mattie went on to do a huge cockroach tile, a rainbow tile, a train tile, and a haunted house tile. Though Mattie is no longer physically with us, his tiles remain up in the Lombardi Cancer Clinic. I will never forget creating these tiles and the joy this painting project brought into our confined lives, and each time I visit the Clinic now, I always stare up at the ceiling to check on Mattie's creations.
Poem of the day: Grief by Charlie Brown
Since you died
I have a new partner.
We dance a lot
Even when I don't want to.
His name is Grief
And he spins me 'round
To tunes not of my choosing.
Unsung music of missed opportunities
And things that will never be.
I will not see you dress for the prom
Instead I am at the dance
where my steps are
Punctuated by my tears
Sometimes many
Or just a few
But always there.
I wonder when
He will leave me
And move on to
A new partner
Leaving me remembering you
With smiles instead of tears
During Mattie's treatment process, I had the good fortune to be introduced electronically to a mom living in Pennsylvania whose daughter was diagnosed with osteosarcoma about a week after Mattie. Lauren is 12 years old, and during Mattie's 15 month battle, Carey (Lauren's mom) and I would email each other back and forth at all hours of the day. We had the wonderful opportunity to meet this family when they came down to the Candlelighter's Christmas Tree lighting ceremony held at the Old Post Office Pavilion building in Washington, DC in December of 2009. Though that event was challenging for me, I enjoyed meeting Lauren and her family. Lauren has a brother named Matthew, who is Mattie's age, and because I read Lauren's blog, I felt as if I knew her in a way, despite never meeting her in person before. I am happy to say that Lauren is doing well thank goodness, and went back to school this year. Carey e-mailed me today and shared the following message:
I had the opportunity to spend some time at Ann's house today. This was her children's last day of school, and since Ann was coordinating her older daughter's end of school party, I was happy to stay at her house and spend time with Michael, her son, until she got home. I appreciate Michael's sense of humor and though we did independent activities throughout the day, Michael would periodically check in with me, and we would talk. In the quiet moments I had today, I picked up a book I started months ago. In fact, I have about three books I have been trying to read for the longest time, but just can't seem to sit still long enough to complete any of them. Well today I made significant headway into Nicholas Sparks' new book, The Last Song. As the book evolved, I could tell one of the main characters was most likely sick with cancer, and as I predicted it, I was correct. I began to be absorbed into the book and the description of the shock about the diagnosis and the pain of caring for someone who is dying from cancer. In fact, here is the excerpt from the book that struck me, because it was as if Sparks' was writing this to me...... "On his way out of the office, the doctor had given him some information. Little pamphlets and a list of websites, useful for a book report but good for little else. Steve had tossed them in the garbage on the way to the car. As he stood beneath the winter sun on the deserted beach, he tucked his hands into his coat, staring at the pier. Though his vision wasn't what is once was, he could see people moving about or fishing by the rails, and he marveled at their normalcy. It was as if nothing extraordinary had happened. He was going to die, and sooner rather than later. With that he realized that so many of the things he'd spent time worrying about no longer mattered. His 401k plan? Won't need it. A way to make a living in his fifties? Doesn't matter. His desire to meet someone new and fall in love? Won't be fair to her, and to be frank, that desire ended with the diagnosis anyway."
What struck me about Sparks' excerpt is that when cancer touches your world, for you, the world stops, and it is almost incomprehensible that the rest of the world doesn't feel the same way. Though I never threw medical facts in the garbage, I did throw many brochures and information away that pertained to the psychological ramifications of cancer. I did this because the information was trite, not real, and certainly not sensitive to the fact that each person and family copes with cancer differently.
As I continue to search through the pictures from the Walk, I have noticed some wonderful photos of children of all ages that our friend and photographer, Jeff, captured. I hope you enjoy these tonight. To me, these are the faces of hope. Hope because to me, their presence at the Walk is crucial. I want the younger generation to be able to understand that pediatric cancer is real, it affects families, and their awareness and knowledge are vital to helping future generations. Some of these pictures are priceless and I assure you there are many more to come.
I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Thank you for posting the pictures you chose yesterday for the blog. First, the one of you and Mattie, reminding us how important it is to step outside the created "rules" occasionally to create islands of joy in our lives. Little events like putting up the Christmas lights in July can help to remind us of what life's celebrations are all about. They are about our connections to and with each other and not about specific dates on a calendar. I really appreciated seeing the posters you created for the walk. Those statistics are horrifying and hard to believe; so many children facing the fight with so little funding to support the battle. It is hard to comprehend how we set our priorities. And finally, your words about Sean's comments. While cancer may have been what sent Sean on the road he is currently on, he is still here to walk that road. To be a mother deprived of one's child is to be on another road. That you can find and appreciate the connections and love that battling on Mattie's behalf brought into your life, says that you are on your own road to recovery, although it certainly has a different trajectory than Sean's. It is hard to sit and examine one's feelings in this way, I respect and honor what you've done and all you have accomplished so far. I hold you gently in my thoughts."
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