Tonight's picture was taken in May of 2009 at the March for a Mattie Miracle. Mattie is pictured with his cousins, Sydney, Will, and Nat. Mattie's cousins live in Boston, but over the course of his illness, they came often to visit him in the hospital. Despite however Mattie was feeling, he enjoyed these visits, and his cousins filled his room with energy, laughter, and made him feel like a kid again. It is not easy for a healthy child to enter a PICU environment, much less to see a family member contending with cancer. Mattie's cousins were very courageous, and never flinched or treated Mattie differently. In many ways, one of the greatest lessons I learned through Mattie's cancer fight, is that children are amazing. They have the gift and ability to be able to see through the exterior trauma, and appreciate the things that are important. Mattie's cousins played with him, talked with him, and made him feel included and important. It is simply hard to imagine that Mattie's smiling face is no longer with us this year.
Poem of the day: The fog of grief by Charlie Brown
I know where I am going
Or do I?
I've been here before
Or have I?
Now I know what they mean
When they say,
"I am lost in the fog of grief"
You cloud my thoughts,
I am like the child
Who blindfolded,
Is spun around
Until dizzy.
Confusion dogs my steps
And I cannot
Find my way along
Once familiar streets.
Perhaps the reason
I can no longer
Navigate these streets
Is that none of them
Any longer,
Lead to you.
I had the opportunity to have lunch with Christine (Campbell's mom) today. Christine is coordinating the registration process for this year's Walk. Christine came to lunch armed and ready to talk about the logistics of registration. We are lucky that Christine has run the registration process at many school events, and this experience was evident as we were discussing the issues at hand. Christine, like many of our dedicated Walk volunteers, perform their roles with dedication, grace, and amazing enthusiasm and energy. Peter and I feel very lucky to be surrounded by this incredible community of people. It is hard to believe that out of such great tragedy in our lives, we have come to see the true inner beauty of people.
After I met with Christine, I drove to see Ann and we discussed the registration process and updated her on how well things were progressing. It is funny how much Ann and I can say to each other in a very short period of time.
Later in the afternoon, I had the opportunity to connect by phone with Alison. As many of my faithful readers know, Alison helped coordinate Team Mattie on many occasions, and was also our Mattie Fund manager. Since Mattie's illness, I would have to say I avoid phone conversations. I am not sure why, other than Mattie couldn't stand me talking on the phone. It seemed to provide him intense pain, and naturally it distracted my attention from him. He trained me well, and to this day, being on the phone is not my desired way to communicate. I prefer seeing people in person. However, Alison and I have been through a lot over the course of Mattie's illness, and therefore talking to her on the phone seemed very natural. As Charlie's poem indicates, sometimes I do walk around in a fog. It isn't intentional, but it does happen, and one of the by-products of being in such a fog is that sometimes you can hurt someone else's feelings. Unintentionally, but nonetheless it happens. Losing Mattie has freed me to have more open and honest communications with people, and today I had the opportunity to chat with Alison and apologize for one of the e-mails I sent to her. This is the beauty and downfall of electronic communication. It is quick but in being quick, sometimes things can come off as being curt and insensitive. I guess my point to this story is the importance of reaching out to friends when you sense something isn't right. Alison had long since moved passed the issue, but I could not. To me when you care about someone, making things right is very important, and can only further the depths of a friendship. Living through cancer has enabled me to understand what is important in life, and what things are worth pursuing, and at the end of the day, a friendship is always worth nurturing.
Tonight, I had the opportunity to see the final revision of the NEW Mattie Miracle Cancer Foundation logo. Thanks to Liz Chiaramonte, our friend, and last year's walk chair, we were connected to a wonderful graphic artist, Kristen Johnson. Kristen volunteered her time, and generously shared her skills with us, and designed a logo that in my opinion captures Mattie's favorite colors and memorializes his "Mr. Sun." It is a whimsical and spirited logo, and it is now posted on the blog and at the Foundation website for all of you to see. We can't thank Liz and Kristen enough for the countless hours of work that went into this project. A project that sets the tone and illustrates the direction of the Foundation.
As the week progresses on, I have been invited back to Mattie's lower school campus on Friday. I will be meeting with the "Magic Man," Mattie's head of school, Bob Weiman. Bob and I will be discussing where the memorial tree for Mattie will go on campus. The tree ceremony will take place later in the month, and I am so grateful to the generous donations that second grade parents (the grade Mattie would have been in this year) provided to the school, in order to remember Mattie in this very touching manner. I have no idea what walking back on campus will feel like, but most likely while doing it I will be fine, because I noticed with me, I always experience a delayed emotional reaction. Nonetheless, I am honored to be meeting Bob, and to have the opportunity to discuss Mattie's tree.
My mom wrote to me today, and sent me the poem below. I hope you enjoy it as much as we did.
___________________________________________________
Touched by an Angel by Virginia R. Sardi
When I think of that impish grin and fourteen carat smile so bright,
I was touched by an angel for a brief second of sweetness last night,
The sun, moon, stars and planets met their match in your brilliance it seems,
I was touched by an angel that exists not only in dreams,
Days were sparkling adventures, as you charted the course of fascinating things we could do,
I was touched by an angel that made life entertaining and serendipitously new,
That spark of creativity with its unpredictable eruptions kept us mesmerized under your spell,
I was touched by an angel enchanting us with his magic out of Bob’s bag of tricks that he did so well,
You were blessed with mental energy, challenged what didn’t seem right,
I was touched by an angel thoughtful, compassionate and bright
Unbounded by nature, you aspired to make the world a better place,
I was touched by an angel who brought love and hope despite the high hurdles he had to face,
You were chosen, we know not why, to share the legacy of your meteoric life to its untimely end,
I was touched by an angel who brought strangers together to become lifelong friends,
On my walk through the hills this morning I spotted a beautiful bird on the wing
I was touched by my angel and I could feel my heart sing
__________________________________________________
I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "As you said, Tuesdays are always a challenging day, not that any of them are really easy right now. At least you are out, meeting with people, moving forward with the foundation and the walk. Those two things are challenging in their own right and so it is not really surprising that you did not have the energy or focus to figure out where you were going. I am glad that you called Peter and that he was able to "come" to your rescue and help you figure out where you were supposed to go. I do want to tell you that you and Peter are very unusual (in a good way). Normally, once a child leaves the hospital in either a positive way or by death, it is very unusual for the family to continue to reach out to the staff and include them in proposed events. I believe that they are open to this because of the special people that you and Peter are; they have come to value you as more than Mattie's parents, but also as friends and advocates for improved care and treatment. This is a very special gift. As you continue to work on the planning of the march and the foundation, I hope your efforts bring you some satisfaction and serenity. I hold you gently in my thoughts."
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