Monday, October 5, 2009When Mattie was four years old, we took him out to eat at his favorite restaurant for Easter. What he wasn't expecting was a visit from the Easter Bunny. At first Mattie was quite intimated by this big fellow, and jumped into my lap, but after a few minutes, Mattie got into the spirit of things!
Poem of the day (Thanks Charlie!): Borrowed Hope by Eloise Cole
Lend me your hope for awhile
I seem to have mislaid mine.
Lost and hopeless feelings accompany me daily.
Pain and confusion are my companions.
I know not where to turn.
Looking ahead to the future times
Does not bring forth images of renewed hope.
I see mirthless times, pain filled days, and more tragedy.
Lend me your hope for awhile, I seem to have mislaid mine.
Hold my hand and hug me, Listen to all my ramblings.
I need to unleash the pain and let it tumble out.
Recovery seems so far distant,
The road to healing a long and lonely one.
Stand by me. Offer me your presence,
Your ears and your love.
Acknowledge my pain it is so real and ever present.
I am overwhelmed with sad and conflicting thoughts.
Lend me your hope for awhile.
A time will come when I will heal,
And I will lend my renewed hope to others.
Today was a productive day for us in many ways. Peter and I have sorted through Mattie’s artwork, and dropped off the pieces going on display this weekend at Tamra’s house. Thank you Tamra for taking on this monumental project with your committee of Team Mattie supporters! I am grateful to all of you, because it means a lot to me to have Mattie’s art at an event celebrating his life. For Mattie this year, art was life. Last night, I did find the courage to go into Ann’s closet and look at all of Mattie’s cardboard box creations. I selected two boxes to display. These were boxes he worked very hard on and had a holiday theme, Halloween and Christmas. The Christmas box has a surprise inside, which I hope you get to see!
Peter also had a great conversation today with Peter Keefe. Peter K., is a fellow SSSAS parent, and he and his family have been outstanding Mattie supporters this year. Peter K. is guiding us on the establishment of “The Mattie Miracle Cancer Foundation.” On today’s phone call were also two lawyers working with us on generating the required paperwork to become an official corporation and publicly held entity. I am very grateful to Peter K.’s skills and guidance, because I know my limitations, yet understand and embrace Peter K.’s strengths. We are compelled to make this Foundation a success, because Osteosarcoma should not be an orphaned disease, which is the classification given to diseases, which are under researched and under funded. So stay tuned for more exciting developments about Mattie’s Foundation. In a way, Mattie’s life and energy was a gift and a miracle, and therefore selecting the title of the Foundation was actually very easy for me. I hope you think it is catchy too.
Today however was not a good day for Ann’s dad. He is practically in a catatonic state, yet is sensitive to noise and all visitors on some level. In a way, he reminds me of where Mattie was toward the end of his struggle. I am all too familiar with the no talking, no noise policy. Within one month’s time, Ann, Peter, and I have seen more than enough death for a lifetime, yet as we sit during these final hours, it is hard not to relive and reflect upon Mattie’s short life and death. I think losing a child is by far one of the worst losses you can ask a person to go through, yet, I also know that saying good-bye to someone meaningful in your life is not easy regardless of the age. The only comfort I have in watching Sully die is knowing that he lived a full, productive, and happy life. Not that it makes losing him any easier, but somehow we as human beings like to rationalize that it is okay for an older person to die. That this follows the natural order of life. True I suppose, but I know whether a death is expected or it is sudden, there is still an overwhelming amount of sorrow, anger, sadness, and emptiness that results.
I certainly have experienced many relatives in my lifetime die, and I have gone to funerals. But until Mattie, I had never helped a person die, and to actually be with a person when one’s last breath was taken. This puts death in a whole new light and context. Death isn’t pretty, it is not like it is on TV, where this is a melodramatic last breath, and the pain and suffering is over within seconds. On the contrary, death can be quite the opposite and it also doesn’t follow a script or plan. You never know what each minute holds. I distinctly remember someone at Georgetown Hospital saying to me that death is natural, but watching death happen is anything but natural. This is actually a brilliant comment, which at the time meant nothing to me until I watched Mattie’s five-hour death march. Mattie’s death had sights and sounds to it that I will never forget. Ann said she heard her dad make this “death rattle” sound today, and so far I haven’t heard it, but believe me when I do, I will be able to identify it in seconds. So in essence Mattie has given me a medical education without ever having to go to medical school. His strength and courage live within me. Having helped Mattie live and battle with cancer has taught me a lot about life, priorities, and helping friends.
I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I know right now it seems you are marching toward a marker (Mattie's funeral and ceremony) with no idea of what to do after that. How do you go on without him? What will the shape and form of your life be? None of us know the answer to those questions but I believe you will find them if you give yourself time. It certainly won't be what your life wouldhave been with Mattie in it but knowing you and Peter, you have too much to give to just lock yourselves away. Before Mattie's illness you had a life that conformed pretty well to the way you envisioned it; then his illness dumped all the pieces out and his death made many of them unusable. Now you have to find new pieces to fill the container of life that you have. I think some of this maybe trial and error; trying on new things/lifestyles/ways of being. Some will be better than others for you and worth keeping, some not. However, in all thissome of Mattie will always be with you, in your thoughts, your hearts and your minds and will help shape what comes after. Today I wish you a space of time in which to believe that there will still be life after the funeral although it certainly doesn't seem that way now. Be kind and patient with yourself."
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