Tonight's picture was taken in November of 2008, after Mattie's second major limb salvaging surgery. During that surgery, Mattie had part of his left humerus removed, part of his right femur (leg) removed, and a portion of his left wrist. It was a huge surgery and Mattie was in the operating room for about 10 hours. About a day or so after surgery, I snapped this picture of Mattie. Despite his other three limbs hurting, you couldn't keep a good boy down. "George," which was the name of Mattie's left leg, was always curious, and compensated for what the other parts couldn't do. Mattie's left leg and particularly his toes worked as well as fingers. Mattie gave us all a good laugh that day, because in between managing the pain, we all needed this comic relief.
Poem of the day: Lost by Brenda Penepent
Am I lost, God?
How sad for me if it is true.
I feel so empty at times.
The pain of separation is too much.
My heart aches for the sight of [his] face,
just once more.
I wonder if I have become
Too much a part of that other time
And less a part of this world.
I know You are watching me struggle
Reaching out to send messengers of comfort
When my strength fails and I cry.
Yet, there is something
intangibly familiar about this feeling
I can’t quiet describe.
Perhaps of some half-forgotten times
When angels held me softly
Stroking my hair.
Then for a just a moment,
the pain and empty ache
Have fallen away from my heart.
So, Father, even in my grief, I’ve known
That You are walking with me
And I am never lost for long.
Today marks the 36th week that Mattie has been gone from our lives. My mood seems to reflect how I typically feel on Tuesdays, however, somehow today I feel it in a more pronounced way. Maybe because my parents went home today and Karen left yesterday. I am not sure, or the simple fact that I have been working non-stop for the last three weeks toward the Walk, and now that it is over, I feel a bit lost again.
I drove my parents to the airport this morning, and after a long flight, I am happy to report that they are safely home. I had several chores to run in the morning, and then met up with Ann for lunch. We have been receiving a lot of positive feedback about the Walk. In fact, a good portion of the feedback we are getting is that the walk raised attendees' awareness of pediatric cancer, and that people found the posters very informative. Wonderful to hear! I am also thrilled that attendees enjoyed the actual Walk, and were inspired to earn a bead per track lap completed. The beads were strung on backpack clips to spell out....MMCF (Mattie Miracle Cancer Foundation).
I spent a good portion of the rest of the day in bed. I was just too exhausted to function, and I realized how tired I was when I was having a hard time driving. Before Peter got home, I did get myself up and decided to weed and water my own garden, which is doing beautifully! Peter planted green beans from seed, in honor of Mattie this year. This was a Mattie/Peter tradition to plant beans. In any case, tonight I picked two large hand fulls of beans and cooked them for dinner. We thought of Mattie tonight while eating, and I know he would have enjoyed seeing these beans. Mattie actually loved vegetables and was a very healthy eater. This was not something I enforced, it just came naturally to him.
I would like to share some more pictures of the Mattie Miracle Cancer Foundation Walk with you tonight. Hope you enjoy them!
Left: Sean Swarner is pictured with my nephews and niece. From left to right are Nat, the Manogue boys (friends of my sister-in-law's), Sean, Will, and Sydney.
Right: Vicki and the Magic Man (Bob Weiman).
Left: Peter, Mary (Lead Social Worker at the Georgetown University Hospital Pediatric Lombardi Cancer Center), Dr. Shad (the director of the Pediatric Lombardi Cancer Center), and Vicki
Left: The first lap was led by family and special guests. Our special guests were Sean Swarner, Maya (she is wearing a pink visor and is holding the banner), Jocelyn (who is next to Maya), and Brandon (who is also holding the banner and is next to Peter). These were three of Mattie's closest friends in the Hospital. In addition, the HEM/ONC nurses of Georgetown University Hospital were also walking the first lap with us!
Center: Dr. Bob captured a great picture of the crowd as the Walk began!
Peter and I were fortunate to receive a link to more pictures of the Walk that were taken by Mattie's very first babysitter, Emily Goodstein. Emily and Alyx were in attendance at the Walk. Alyx was also one of Mattie's babysitters, and none of us would have thought that the cute toddler they worked with would now be taken from us due to cancer. Emily is a very creative photographer, and I truly enjoyed receiving her pictures. I hope you enjoy seeing them too!
I continue to be very moved by the support that others are so generously offering to us. Wasfi and Peter worked together at Arthur Andersen, and is a friend of ours. Wasfi sent us a message today, which I posted below. I welcome you all to attend Twisted Vines on Wednesday in support of the Mattie Miracle Cancer Foundation. Thank you Wasfi for this creative fundraising idea!
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A MATTIE MIRACLE FUNDRAISER
This Wednesday May 26, 2010, Wasfi will be guest bartending at Twisted Vines, which (if you don't already know) is a great wine bar in Arlington recently opened by our friends Josh and Sybil Robinson. Wasfi will be donating all of his tips to the Mattie Miracle Cancer Foundation…So tip away! Wasfi will start bartending right around happy hour time (5:30PM - they run out of wine).
Info on Twisted Vines can be found on their website (and their food is SO GOOD):
2803 Columbia Pike
Arlington, VA 22204-4411
(571) 482-8581
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I would like to end tonight's posting with three messages. The first message is from Mattie's oncologist, our friend, and NEW MOM. Kristen wrote, "I hope you are well. I'm excited to read the blog (perhaps tomorrow) to hear about the walk. After just 6 days of parenthood, I admire your strength, courage, and advocacy for Mattie even more. You are amazing parents. Thinking of you on this very busy and tiring Tuesday and every day."
The second message is from my friend, Charlie. Charlie wrote, "Thank you for sharing the wonderful and inspiring words you spoke at the walk with the rest of us. It is clear that the walk and the entire day was a huge success and how wonderful that you were able to follow that up with a visit to Georgetown with Sean Swarner yesterday to connect with and give all those children battling cancer an injection of hope. Of all the medications we have that fight disease, hope is by far one of the strongest we have and Sean of all people knows this very well. I am so glad you were able to visit with so many of the professionals who helped Mattie in his fight including Dr Shad, Denise and the nursing staff. I am sure that your visit made a very difficult day seem like Christmas for many of the young patients in the hospital; giving and caring are clearly two of your greatest strengths. I do realize that today is Tuesday and that on top of the usual angst of the day, your parents are headed back to California, many of the out of town guests are headed home and you are exhausted from all the planning and preparation. Therefore, when I practice today, I will send my energy to you to help you find a new balance moving forward. Please give yourself some of the love and care you gave so freely to others over the past few days. I hold you gently in my thoughts."
The third message is from my friend and colleague, Nancy. Nancy wrote, "As I just returned from a morning walk, I wanted to check in on the blog from the last two days. Kudos to everyone on Team Mattie and the great success of the 1st Annual Walk. Charlie's poem was beautiful and captured the feeling eloquently. You continue to reach out of yourself even when you don't feel like it. Your greeting was passionate and resonates on paper as it did when you gave it. It is what made Mattie able to endure his treatment and show everyone how to fight, even when the results aren't as one would have hoped. Peter and you will do much with this Foundation and I'm sure that many more vendors and supporters will become aware of this dreaded disease and its effect on families. I plan to watch the video clips later today! I am glad that the sun came out for the walk. Although, I'm not surprised as your Mr. Sun was watching everything that was happening. Enjoy your success and care for yourself over the next few days. It is good that Karen and your parents are still here to balance this after time. Be well and know that you are in my heart and mind today."
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