Tonight's picture was taken in August 2009 by Peter. Peter captured a moment in time when Mattie fell asleep on our couch. Mattie NEVER napped, but as he was battling cancer, and fighting for his life near the end, he would wear out very easily, and needed to periodically rest. There is something about this picture that captures my attention. Perhaps it was Mattie's peaceful and angelic look, or simply despite his body being ravaged by cancer, he still was a beautiful boy inside and out. As today marks, the 31st week since Mattie died, I thought this picture would be very appropriate. When I stare at this picture, all I can say is I miss that face, that personality, my son.
Poem of the day: Grieving by Charlie Brown
I know you said look up
Try to find hope in the future
But what hope is there
When he is gone?
Some days all I can do is survive
Breathing is a task
Getting up an obstacle
Facing the world an impossibility
Please don't rush me
Out of my grief
Don't ask me
To hide my pain
Just be here
Let me tell my story
To an audience
Once again
I know it is hard
To see me like this
So much harder
To actually be here
You can't find
A solution to my crisis
A salve for my pain
There is none
I have to learn
To live with it
Give me time
And space to grieve.
When you truly absorb tonight's picture and stare at it a while, it is impossible not to feel outrage and deep sadness over the loss of Mattie. I can't help but look at this picture and feel as if nothing is right in the world, nor will ever be right in the world, when pediatric cancer is alive and well. Keep in mind that 46 children A DAY are diagnosed with cancer, and cancer is the number ONE disease killer in children. Despite the high prevalence and growing health care costs associated with caring for a child with cancer, the funding for pediatric cancer clinical trials has gone down every year since 2003. Despite very aggressive therapies that approach the limits of tolerability for children, the overall survival rate for childhood cancer has remained unchanged since 1998. In fact, Dr. David Smith, Division Director of Pediatric Oncology at Johns Hopkins, stated that the survival rates for children and adolescents with osteosarcoma have been unchanged for 15 years. Childhood cancer is desperately underfunded and the standard medical protocols used to treat children are over 25 years old. Just SHOCKING! These facts are all unacceptable especially when considering that 2,300 children and teenagers die EACH YEAR from cancer.
The facts are what they are, and so much more needs to be done to help secure the lives of children diagnosed each year with cancer. The Mattie Miracle Cancer Foundation is committed to making a difference. As Peter and I talked over dinner last night, MMCF's mission is simple, just remember your ABC's. A.............Awareness and Advocacy for children and families dealing with cancer, B............ Building and providing support one family at a time, and C............... Children, we must always remain focused on why we are doing this, to assure that children have the chance to live happy and productive lives! Peter and I appreciate the wonderful support we are receiving through registrations for our MMCF Pediatric Cancer Walk on May 23. We thank you in advance for getting the word out about the Foundation's first event.
I had the opportunity to spend some time outside today, between being in Ann's garden, and having tree time with Abigail. The irony is our story about the two dogs on a cruise, picked up right where we left off. Today, Katharina joined us as well, and it was nice to have her participation. Mind you this tree is on a neighboring property. Today, the neighbor's children were outside, along with their dogs! Despite all these distractions, Abigail did not miss a beat. The story went on, and she can do this for hours. I am used to marathon play times because of Mattie, so in essence that skill shone through today. Mattie taught me well. He taught me a great deal about patience, love, persistence, and loyalty.
I would like to end tonight's posting with three messages. The first message is from Mattie's oncologist and our friend. Kristen wrote, "It is not only on Tuesdays, but everyday that you and Mattie touch hearts. I can not wait for the day when you are able to look at your work and see all that you, Mattie, and your team have accomplished in the fight against Osteosarcoma and pediatric cancers. They need is great...and you are fulfilling that need. Thinking of you on this Tuesday and every day."
The second message is from my friend, Charlie. Charlie wrote, "I am sure a lot of people had difficulty reading yesterday's blog; it is very hard to sit and not be able to do anything to help someone with the level of pain that you are experiencing. All that any of us can do is to listen and to witness and that runs counter to everything that we are taught to do. Facing a future without Mattie must seem pointless and empty; I know that nothing and no one can replace him but I hope you do find a reason to go on, a way to immortalize his spirit and memory that will eventually bring some healing to you. As you said AA works because people listen and don't give feedback; perhaps you can find that in a group like Compassionate Friends. As I practice today I will send you the energy to keep going until it becomes a way forward. I hold you gently in my thoughts."
The third message is from a former student, and now my friend. Susan wrote, "I read last nights "intro" explaining the picture and it made me smile. How very lucky Mattie was to have a mom who could enter into imaginary play so easily! When I see kids at the grocery story in their Superman uniform I laugh out loud. GO MOM, I want to yell. Any mom who can give herself up to not worrying about "what other people think" and can just love being a mom has just got to raise secure, independent kids...like Mattie. One of my favorite pictures was taken in LA at Victoria's Secret. Ari (age 5) and I were dressed up in robes with Caribou feathers...we'd been pretending we were French Spies on a mission. To the store's credit they let us run around there talking in our really poor French accents laughing our heads off. Here's to the special of the day, Chef Mattie's Bug Bouillabaisse!! And his mom who knows what is important!!"
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