Friday, October 16, 2009Tonight's picture was actually taken by Mattie. I gave Mattie the camera while Dr. Bob was removing his leg cast. I always loved Mattie's creativity, and I particularly admired this photo. Mattie was able to capture the intensity of Bob's concentration, focus, and steady handedness. After all, Mattie had a camera pointed right at Bob, with the flash going off, and yet Bob never flinched throughout the process. The picture also gives us the perspective of what things looked like from Mattie's point of view while getting his cast removed.
Poem of the day: I Need To Be Heard by Leslie Delp
I need to be heard....
Please don't tell me how you feel!
I need to be heard...
Please don't try to comfort me by telling me "You'll be better in time."
I need to be heard...
Please don't pacify me by trying to "top it"with a hurt of your own.
I need to be heard...
Please don't look away when I mention that precious name.
I need to be heard...
Can't there be anger among sadness and misery?
I need to be heard....
Meet me where I am, and listen to me....
Until I don't need to be heard anymore.
I began my day by watching the Mattie Tribute video we created with Mary, Mattie's technology teacher. This video captures Mattie's life beautifully, and it also featured songs in the video that meant something to Mattie. A lot of thought and love went into this video, and I can't thank Mary enough for giving me this gift. Whenever I get lonely, I can turn to this video and remember my Mattie. After watching the video, I reflected on Mattie's life, and I began to realize, as I expressed to Peter, that I can't remember Mattie walking and most of all I can't remember when Mattie was healthy. All I remember is the sick Mattie, the traumatized Mattie, and the dying Mattie. These images will take some time for me to process and come to terms with, which from my assessment makes the grieving process for me more complicated and difficult. Not only do I eventually have to deal with grief, but I am dealing with traumatic grief. From my perspective, I have to feel somewhat safe in order to be able to process such a loss, yet after experiencing Mattie's cancer for 13 months, repeated crises, living in a PICU without much sleep, and his horrific death, I have learned that nothing about life is safe or guaranteed. I don't say this lightly, but I can assure you I have seen more things in one year than most people see in a lifetime. I am not touting this fact, on the contrary, I don't wish this nightmare on any one of you. However, unlike a nightmare, I can't wake up from it, this is my daily existence.
It is an uncertain existence, and an existence that makes no sense to me, and therefore I am left to feel so insecure that it is hard to feel safe enough to explore my own emotions. This revelation came to me tonight. I also came to the conclusion that a part of me feels guilty to have survived Mattie, this is not how things are supposed to happen in life. Children are expected to outlive their parents, which in my perspective only further compounds my trauma.
Peter and I met with Peter Keefe (a fellow SSSAS parent and now our friend) and a lawyer today to finalize the paperwork for The Mattie Miracle Cancer Foundation. I naturally do not have a business or law background, nonetheless, I feel like I am learning a lot from this process, and I found today's meeting very helpful. The lawyer Peter Keefe connected us with is simply human and incredibly knowledgeable. Not to mention supportive of our endeavor. Despite my own tumultuous feelings about Mattie's death, I do feel like we are making significant progress on the Foundation front. However, it became very clear to me from the meeting that many foundations that are set up each year, however the majority fold and are not successful. I made a mental note of this comment throughout the meeting. In a way this comment reminded me of my graduate school days. I distinctly remember sitting in a predissertation writing class, and the professor turned to all of us on the first day of class and said, "take a good look around you. The majority of you in this classroom will NEVER complete your degree, in fact maybe only 20% of you in the room will get a PhD." I still remember this sickening feeling I had in my stomach when I heard this pronouncement! I did not like hearing this, but what the professor was stating was a fact, since only 2% of people in the United States actually obtain a doctorate degree. Okay, so why am I telling you this story? Because for some reason, when I heard about the success or lack there of with foundations today, I got the same sickening feeling I did in graduate school. The same feelings of self doubt, concern, and disillusionment resurfaced. Clearly we know how the graduate schooling worked out for me, but I must admit I was a different person then. I was determined, younger, and not beaten down by the worst thing that could possibly happen in my life. So in the process of dealing with trauma and grief, I now know I need to start building up my confidence to attack this foundation endeavor. With all that said, we can't thank Peter Keefe enough for all he is doing for us. His guidance, patience, and support are invaluable to us.
Peter and I had the opportunity to have dinner with Ann and her family tonight. Bob's brother and sister-in-law are visiting, so we had the chance to get to know them and to also connect with Tanja and her family. I am working very hard at connecting with the outside world, yet in a way I feel as if I live in a parallel universe. My body is present, but because of what I have experienced with Mattie, my brain and heart seem to be in a different location. It is a hard feeling to describe. At dinner we also talked about Mattie, and hearing about Mattie is actually a very good thing for me. I love hearing about how others experienced him, how they felt about him, and how they continue to remember him. In fact, Ann shared with me a story about her daughter, Abigail tonight. As many of you know Abigail and Mattie were buddies and attended the same preschool and kindergarten class. Today Abigail went bowling with her siblings and some friends. Abigail picked out a particular bowling ball (yellow in color) and told Ann that she wanted to name the ball, "Sunshine." Why sunshine? Because she told Ann that Sunshine reminded her of Mattie. You may recall that Mattie received a lovely stuffed toy albino snake from his osteo buddy Jocelyn, which she gave to Mattie in remembrance of his 7th birthday party. In any case, this bowling ball was "special" and "lucky" to Abigail today, and she truly did not want to part with this ball. If others tried to use it to bowl, she got upset, and of course there could be many explanations for her being upset, but the one that seems to make the most sense to me is that Abigail in her own way is grieving for Mattie. I also find it fascinating that Abigail is now playing with Legos. Not something she typically played with prior to Mattie's death. Hearing this from Ann today gave me great pause. I was not only touched by Abigail's connection to Mattie, but I was taken aback by the sensitivity and the depths of grief experienced by a 7 year old.
I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "Yesterday was such a grey, sad day and I can just imagine Peter walking about on Roosevelt Island. Finding the one citrus fruit must have been a bit like finding a little sunshine in all of that and I would like to think that's how Mattie would have seen it. I listened to Ann's tribute in person on Saturday but I am glad you printed it in the blog; I missed parts of it because I was crying. How much better our world would be if we lived as Mattie lived,"caring deeply, with details, friends, family and life" taking priority. Take a space of time today to feel just how much many of us care about you, Peter and Mattie and how we each honor him in our own ways."
The second message is from a fellow SSSAS mom. Ann's daughter, Claire and Mattie were in the same kindergarten class in 2007. Ann wrote, "I have been thinking of you on this dreary day. Hope you're hanging in there. I also can't stop thinking about the service and celebration of life for Mattie last weekend - so thoughtfully planned and beautifully executed. Every element simply shone with the love you, Peter, and so many others have for Mattie. After listening to all the speeches, observing his wonderful works of art and looking through all the photo albums, I feel like I really got to know Mattie. I also wanted you to know that your careful attention to the needs of the children made it a very therapeutic event for Claire. She had been coping with her sadness and confusion by refusing to talk about Mattie. Participating in the celebration shifted the focus to an emotion she is much more comfortable with - the joy of having known him. You are very generous to have thought about their needs."
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