Tonight's picture was taken in July of 2009, in the physical therapy gym at the Georgetown University Hospital. As you can see Mattie was working hard trying to build up strength in his arms. The yellow ball in the picture was actually quite heavy, and it took a great deal of energy for Mattie to toss it. But Anna (Mattie's physical therapist) knew how to inspire Mattie, and Mattie for the most part always complied and gave it his all. This picture was taken two months before Mattie died, and though he complained that his stomach always hurt him and he wasn't hungry, I never imagined the reason for this was that his cancer had spread rapidly. I assumed it was an after effect of the chemotherapy. You will also notice that Mattie was wearing a shirt with orange in it. Orange and red were Mattie's favorite colors. He liked bold and vibrant colors, which is why we felt the Mattie Miracle Cancer Foundation colors had to incorporate Mattie's preferences.
Poem of the day: I Miss Your Laughter by Nicholas Gordon
I miss your laughter, fun, and gentleness.
I miss the things I used to do for you.
I miss the time, now filled with emptiness,
When each day was a stage for something new.
I miss your love, though mine for you remains,
A passion with no outlet to the sea, A teardrop in a desert,
that contains What's left of my maternal ecstasy.
I miss your presence, like a silent chord
That anchored even solitude in grace.
I miss, for my love's labor, the reward
Of seeing some small pleasure in your face.
All these I miss, and yet they are all here
Within my heart, far more than I can bear.
I had the opportunity today to help Ann with several flower arrangements for her daughter's upcoming Holy Communion party on Saturday. It is amazing how fresh flowers can transform any living space and make it special and magical all at the same time. Ann and I have been trying to track down sunflowers for the last three days and some other specific flowers as well. Today, we were successful and I would say that Abigail's party is well on its way to being quite memorable.
My lifetime friend, Karen, has been following my craft projects very carefully, and today as always she sent me an hysterical e-mail. In these witty e-mails, she tries to joke with me, and at the same time encourage me to open up my own business specializing in crafts, landscaping, party planning, and maybe throw in professional counseling in this mix. Karen has known me since 6th grade, and she has always seen me as a very creative person. However, this is not a side most people see in me. I find it particularly interesting that as I am dealing with Mattie's loss, I am returning to skills that I used when I was much younger. Seeing and creating beauty seem to be very therapeutic for me.
I went to AC Moore (a craft store) today to look for some materials for the MMCF Pediatric Cancer Walk. I have spent a lot of time in this store recently, and I am getting to know certain people in the store. There is a lovely lady who works the check out counter, and today she admired the beaded bracelet that Mattie made me. She asked if I made it, and I explained that I did not, but my son made it for me. She went on to tell me that he is very talented and that I should cherish it. I responded by telling her I most definitely do especially since he died of cancer. She was visibly stunned to hear this, but responded in a very warm and sympathetic manner. Which fits her personality. But she is not the first person to comment to me on Mattie's bracelet. I have experienced complete strangers coming to me and asking me about the bracelet. There is something very special about it, it means a great deal to me, and it makes me feel closer to Mattie.
We are continuing to make great progress with plans for the MMCF Walk, and we are thrilled that registrations are rolling in. When Peter got home from work today, we went for a walk by the water. It was nice to get outside together and chat about the day's activities. As we were headed back inside tonight, Peter pointed out the moon to me. As always, I said to myself, "there is my Mattie Moon!"
I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "I love this picture of Mattie with the legos from Kazu; so much of Mattie's time was spent building and creating with legos. I suspect that if you did a search for legos, your blog would come up. I am sure that yesterday's meeting with the DC city council budget oversight committee was very challenging. It really is difficult to know what is the right thing to do on behalf of one's child; our children trust us and we in turn trust our doctors to give us the best medical advice they can. Unfortunately, sometimes they don't know or there is just not enough information available and there are many members of the medical community who are unwilling to say that they don't have all the answers. I am glad you had the best help available in spite of the outcome; you could not have had a more open, supporting and caring group of professionals to help you as you fought for Mattie. Today as I practice, I will send you the energy you need to continue the planning for the walk that is both a tribute to Mattie and a hope for the future for other children with this dreaded disease. I hold you gently in my thoughts."
The second message is from a friend of my sister-in-law's. We had the opportunity to meet Lesley for the first time in September 2009, at Mattie's celebration of life event. What you should know is Lesley lives in Boston, and came down to Washington, DC just for the day to attend Mattie's funeral. I am also proud to report that Lesley was our first official on-line Foundation contributor today, and we are very grateful for her support. Lesley wrote, "There is not a day that I do not think about you, put myself in your position, and wonder if I would have the strength to give back in the way that you do. I am sure the walk will be a success. It will be another reminder of how adored your son was and how this horrible disease needs funding."
1 comment:
Hey Vicki,
I just wanted to let you know that I copied your Native American Poem from one of your older blogs, and used it in the folders of Keaton's obituary that we handed out at his funeral. We posted it under a picture of his beautiful, smiling face. I have read your blog over the last couple of years. Since Mattie left you, I read your words of pain, and wondered if I would be able to make it through that pain if my Keaton left me. Even though he left his body on April 7th, I still feel that he is somehow still with me, and have not been able to grieve as of yet...maybe I am still in denial. I wish you success with Mattie's Miracle Foundation, that it will be able to bring much needed awareness and funding for research into a better treatment for this monster disease, as well as helping the families of the monster's victims.As for me, I am still wondering if I, indeed, will be able to go on, for without my son, my world is lost.
Karen, Mother of Keaton www.caringbridge.org/visit/keatonlee
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