Tonight's picture was taken in July of 2009. Two months before Mattie died. Looking at this picture it is almost incomprehensible to believe that Mattie's body was being taken over by cancer. We just did not know it at the time. Yet despite that, he put up with our insistence to do physical therapy, and even when he said he did not feel like moving, he complied and gave it his all. I just want to impress upon you the feelings of hope we all had at that point in time. Mattie had completed his chemotherapy regimen in May of 2009, had all the surgeries behind him, and the goal was to gain strength and mobility to get ready for school over the summer of 2009. After over a year of torture, we thought we were finally going to get some sort of break. The funny part of living with cancer is that in the back of your mind there is always the sickening feeling that it will return, at least with multifocal osteosarcoma, it is just a matter of when. We quickly learned that a break was not in our future plans for Mattie. Instead of trying to rehabilitate Mattie in order to return to school, we had to learn a whole new world of palliative care and death and dying. When your hope is crushed like this, I can tell you it is very hard to restore it. In fact, hope is not a word I use in my vocabulary for the most part now. What I do see in this picture is that Mattie had an incredible spirit and will to fight for life. This was not only evident in how he handled physical therapy, but also in the manner in which he died. Mattie did not want to die and fought the process for hours, until he was heavily sedated. As I reflect on Mattie's death today, and the loss of his presence on this Tuesday, I can't help but be reminded of that horrible dying process.
Poem of the day: Did you? by Charlie Brown
Did you know
Did you have a clue?
I suspect you did
Because you're you.
I could not bring
Myself to say
You would not be
With us, always.
I'm sure you wondered,
How could you not,
When we gave you "Red"
There on the spot.
So we all pretended
And shared hope and love
And waited for a miracle
From up above.
It did not come
And you had to go,
But we loved you so much
That you certainly did know!
Today marks the 31st week that Mattie has been gone from our lives. Somehow Tuesdays are just complicated days for me. I did not sleep well last night, and that seemed to contribute to my oversensitivity today. As the day wore on, I found myself crying at least four different times. In fact my lifetime friend Karen asked me what in particular brought this on, and my response was nothing in particular. I gave her a laundry list of reasons I could be feeling this way, but it simply wasn't a happy day.
I began my day by meeting Katherine at Georgetown University Hospital. Katherine was one of Mattie's HEM/ONC nurses, and now serves the role as the HEM/ONC nurse educator. Katherine and I discussed the May 23rd walk that the Mattie Miracle Cancer Foundation is planning, and what role the nurses can play in the event. We would love for the nurses to participate in our educational awareness component, especially since educational awareness is one of our Foundation's goals. We had a productive meeting and feel as if the inclusion of Georgetown will be a great addition to the walk.
After that meeting, I then headed to Alexandria for a meeting with the Walk's Logistic committee. We did a walk through of the location for the event and discussed crowd flow and other vital components of the walk. It too was a very productive meeting, and it helped me envision how the event was going to be run. However, I did start the meeting off by telling the committee members that this was a hard day for me. When I am emotionally in a fragile place, it is some times hard for me to absorb information. At the end of the meeting, Tamra who sits on our Foundation board, is on the logistics planning committee for the walk, and is also our friend, came up to me and gave me a hug. Some times hugs are indeed better than words. As Tamra held me she also said that soon the day would be over, and tomorrow would be a brand new day. Tamra understood that today being Tuesday, was a hard day for me, and she wished me hope for a better tomorrow. I reflected on her hug, and the importance of this type of love in one's life. There are times, especially when I am having a bad day, that when you hug me, I can easily begin tearing up. Which is what happened this afternoon. Tamra has given me hugs under the most trying of times. I told her in an email that I will never forget her visit to the hospital on the morning of September 7 (a day before Mattie died). Tamra walked into Mattie's PICU room, dropped off hot tea and coffee for Peter and I. She did not have to say a word, because it was evident Mattie was very sick and dying. She came over to me, hugged me deeply, turned around and left the room. This interaction will always remain in my mind and heart. Because NO words were necessary. She was able to communicate the feelings all non-verbally. This was a powerful interchange, and clearly made an impression upon me, since I am sharing it with you tonight.
I spent some time with Ann this afternoon too, but I could tell I was dwindling and came straight home. When I got home, I attempted to do some things for the walk, but I quickly realized I just had to lie down. When Peter got home from work, I did not feel like moving, and he could also tell I did not feel like talking. He gave me my space, checked in with me a couple of times, and even made dinner. When these waves of sadness come over me, they are upsetting and also paralyze me.
In the midst of how I am feeling, my mom sent me an e-mail tonight with a message entitled, A Ray of Hope. There is that word that I no longer relate to, and yet it is clearly something I wish to find again.
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Over the week-end Mauro and I attended a Saturday evening mass at St. Francis Xavier, a church in our parish, and the homily given by the priest, since it was the week after Easter, focused on the promise of an afterlife made possible by Christ’s death and resurrection. I thought of Mattie and I tried to contemplate what renewal of life in a spiritual state in another dimension, time and space meant for him and whether he had at last found the peace and happiness he so eagerly sought in this life but that was denied him in his final days on earth. If anyone should be with God in paradise, I reasoned, surely it should be Mattie, an angel with a mystical smile and a generous and open heart who brought so much happiness and understanding to all lucky enough to know him in this life. I felt a strong desire to know how he was doing since if Mattie’s spirit in the afterlife was anything like the Mattie I knew, he would surely make a difference in his new eternal home and he would definitely have a strong opinion about the transformation and a reaction to his surroundings. What I really wanted was some sign that Mattie was at peace and felt free to be himself in his heavenly home. I guess I allowed myself to indulge in a metaphysical romp in an effort to stay connected to Mattie in any way I could, even if I had to wander into what some may think of as the “Shirley McLain” supernatural zone. However, after mass, we came home and it was time to prepare dinner. The real world kicked in and I quickly changed gears and went upstairs to my bedroom to change clothes to prepare myself to work in the kitchen. It was about sunset when I went upstairs to the bedroom and observed how dark it was, as the shades were drawn. However I noticed a powerful beam of light coming through the space between one of the shades and the window it was covering in the bedroom. When I followed that remarkable beam of light, glowing brilliantly in the dark, I noticed that it landed squarely on Mattie in a photo given to me by his parents. In the photo (as you can see in the picture on the left), Mattie shining face was illuminated and aglow and in contrast to the rest of the room. He stood out like an angel surrounded by sunlight against this blackened background revealing a luminous smile and a mischievous look of merriment. I thought of “Mr. Sun,” Mattie’s creative interpretation of what the sun meant to him and it was very fitting to see him surrounded by a flood of sunlight. It was a compelling moment and it almost felt as if Mattie was communicating his intense happiness through this magnified, unique and solitary beam of light that glowed in my darkened bedroom. I stared at his face for a long time and felt a sense of contentment at this “evidence” that Mattie finally found the peace that had so eluded him in his final fatal moments of life. I have gone into the bedroom on other occasions at about the same time but have not seen that magical beam of sunlight. After all, he was our nature boy here on earth and often expressed his emotions and feelings through his love of nature. Why wouldn’t he do the same thing now? Could it be that a strategic beam of light was sent that evening as a special message and awakened a promise of hope in our hearts that our precious angel has finally found the joy and happiness he so richly deserved at long last?
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I would like to end tonight's posting with two messages. The first message is from Mattie's oncologist and our friend. Kristen wrote, "Dear Vicki and Peter-- Just a short, but sweet, note to say that I am thinking of you on this Tuesday and every day. Much love."
The second message is from my friend, Charlie. Charlie wrote, "You did your best. You loved Mattie with a spirit and a will second to none and he certainly knew that. Mattie had tremendous courage and he faced things many of us would quail at. What I do know in my heart is that he no longer is in pain; that he is a part of all that is good in the world and that you should be proud of both him and yourself. I've been listening to the birds this morning and they just keep singing as if to lighten everyone's morning. I hope that hearing the sounds of nature and Mattie's splashing fountains lightens your day. As I practice today I will send the strength I find to help you as you continue to plan for the march and the foundation. I hold you gently in my thoughts."
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