Monday, November 2, 2009

Monday, November 2, 2009

Tonight's picture was taken in October 2008. Mattie was sitting in the Childlife playroom at Georgetown University Hospital. In front of him on the table was his ocean creation. He painted the blue backdrop, and then created sea creatures out of model magic. Mattie even pulled Brandon (his big buddy) into this project. Brandon created a shark and other creatures to add to the scene. Mattie played with this ocean set up for days, and with each new day of play, he would add more things to the scene. Mattie's ocean became the topic of conversation within the playroom for that week. It was through these projects that Mattie showed others his natural creativity, his fun for life, his ability to draw others into his play, and most of all, looking back, Mattie was teaching us all something about ourselves. I miss that beautiful face, his creative spirit, and mostly his tender and loyal love.


Poem of the day: Not Like You by Sheri Hess


I am a mother, though not like you.
You cradle your sweet baby in your arms,
Mine are empty, but I hold him in my heart.
You brush her soft curly hair,
and tie pretty pink bows just right.
A lock of his hair is tucked neatly in a book.
You pick daisies and tie them in a chain to wear around her neck.
I cut lilacs and arrange them in a vase to set at his grave.
You look forward to dreams and plans.
I hold on to memories.
I am a mother, though not like you.


Charlie sent me this poem today, and it spoke to me. Mainly because the poem expresses my reality. I may be a mother, or let me rephrase this, I will ALWAYS be Mattie's mother, but what defines me as a mother is no longer. I no longer have a child to care for, someone to help dress, feed, take to school, do school projects with, after school activities, and the list goes on. These are things parents take for granted each day, but I assure you when these perceived difficult, stressful, or perhaps mundane tasks are taken away from you through death, you realize just how much you miss them. How you long for them to be a part of your life, and how each day without them and without Mattie seems more unstructured and at times meaningless.

Peter and I spoke this evening over dinner and he shared with me a revelation he had about our situation. On some level I understood this already, but I guess I hadn't verbalized it. Peter explained that we are dealing with THREE losses in our life. I stopped to think about that because I wasn't following him at first. The first loss, was the loss of our everyday life. Specifically the life we were living back in July of 2008 before Mattie was diagnosed (July 23, 2008). As soon as Mattie was diagnosed our world changed DRAMATICALLY. We no longer left our home for the most part, we lived in isolation because of Mattie's compromised immunity and because of the way his treatment impacted him psychologically, and in this process we retreated or disengaged from the world slowly, but it happened. During Mattie's treatment I stopped reading the papers, stopped watching TV, and in all reality there were many a day that I would joke with Alison (our Team Mattie Fund Coordinator) to please let me know if there was a local or national emergency because I was too far removed from reality to know. I was joking, so it seemed, but I was actually VERY serious. The second loss, and a very profound loss at that, was Mattie's death. This is a loss that I must say I may never get over. It lives deep within me, it pervades my mind and my heart, and at times is all consuming. The third loss pertains to losing a support network that became a crucial part of our daily living for 13+ months, and that is the separation from Georgetown University Hospital. I would say for the most part, people do not become attached to their doctors or nurses who care for them. However, the level of care provided to Mattie and our family was intense care, life and death care. The doctors, nurses, and support personnel at Georgetown became our family. When Mattie died, this social network was pulled from us, and in essence what does this leave us with???? We do not feel a part of our former world (the pre-cancer world), and we no longer are part of our cancer community. So Peter and I feel like we live in limbo, or as I tell Ann, purgatory.

Peter spoke to me tonight about the importance of Ann in our world. Not only does Ann keep me grounded, makes me feel needed, makes me feel as if my life matters, but as Peter so astutely stated, Ann is our main bridge between our former world (our pre-cancer world) and our cancer world (not only was Ann our Team Mattie coordinator, but she checked in with us daily, sat with me through every scan result that we received - results that usually weren't positive, played with Mattie on a consistent basis so that I could take periodic breaks, and most of all dug deep to instill HOPE, when it was very hard to find it for ourselves). She carried us through both worlds, and now she is desperately trying to help us find a way to live in our new reality, a world without Mattie. This is no easy task. There are days that I shut down from Ann as well, and she understands that, but also never gives up. When you experience such a traumatic death, nothing makes sense, and the level of vulnerability I feel is intense. It is hard to reengage back into the world, it is hard to let others in, and most likely I am sure how I deal or don't deal with those in my former life is disconcerting to some of you. It is in these times where you feel you can't understand me, or you feel as if I need help. I encourage you to pause and reflect on what Peter and I have survived in one year. If you truly felt what we went through, then you know that judging me, judging my decisions to protect myself now, only makes perfect sense. It took me 13+ months to learn to live and survive in a PICU, so after this trauma and losing Mattie, I can imagine it may take me that amount of time or longer to feel comfortable again in your reality.

After the depressing day I had on Sunday, I did manage to get up today and leave our home. I went to visit with Ann and Mary (Ann's mom), and then Ann and I went to the mall together. I had the opportunity to brainstorm with Ann her daughter's upcoming 12th birthday party. For that moment in time, I stepped out of my usual state of sadness and walked around, chatted, and had lunch with Ann. It was funny, while looking around, Ann and I spoke about Peter's birthday which is coming up in November. In one breath Ann mentioned that she would watch Mattie so Peter and I could go out. Then she caught herself. To some extent, Mattie is dead, but his presence is so deeply felt and it is hard on some level to accept his loss. Ann is never afraid to mention Mattie in front of me, and I appreciate this very much, because he is alive and well within me.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Thank you for sharing that wonderful picture of Mattie with the haunted house he created. I think Mattie appreciated the "spirit" of what Halloween is supposed to be rather than being caught up so much in the collection of candy. I am not surprised that you hit a low yesterday the day after Halloween; you got through the difficult day but that doesn't make the other days easier. People describe grief as the ocean, with it ebbing and flowing like the waves or as a roller coaster with days that are so difficult that they can take your breath away. No one can take your grief away but as long as you are willing, friends and family will be there to help you over the most treacherous spots. I do want to say that as far as I am concerned you are a mother, you have been one since you knew you were pregnant and you will be one your whole life. Mattie is not physically on this plane of existence any longer, but everything I know about how you cared for him while he was well and while he was ill argues that "mothering" is in your soul. On Mattie's behalf I thank you for your love and advocacy for him."