Tuesday, June 14, 2011

Tuesday, June 14, 2011 -- Mattie died 92 weeks ago today.

Tonight's picture was taken in June of 2007. Mattie was proud of his airplane drawing behind him and was happy to show it off!

I Heard Your Voice in the Wind Today ~ Unknown

I heard your voice in the wind today and I turned to see your face; The warmth of the wind caressed me as I stood silently in place.
I felt your touch in the sun today as its warmth filled the sky; I closed my eyes for your embrace and my spirit soared high.
I saw your eyes in the window pane as I watched the falling rain; It seemed as each raindrop fell it quietly said your name.
I held you close in my heart today it made me feel complete; You may have died...but you are not gone you will always be a part of me.
As long as the sun shines... the wind blows... the rain falls... You will live on inside of me forever for that is all my heart knows.


As we enter the 92nd week of Mattie's passing, the poem I posted tonight seems appropriate. It is amazing how the wind is no longer just the wind, that a passing butterfly is NOT just a butterfly, and certainly the moon isn't just some sort of celestial body. Instead, for us these are all symbols and connections we have with Mattie. This poem captures that quite beautifully. Some times I feel trapped now in a world that doesn't understand the magnitude of my loss nor the pain one will always have over this loss. 

Though this song has absolutely NOTHING to do with Mattie, it was playing in my head all day. It is a Lerner and Loewe song featured in the play, My Fair Lady. The song is entitled, "I've grown accustomed to her face." In particular, the verse below gets me because it is almost impossible to grow accustomed to your son's face and then not see it again.

I've grown accustomed to her face. She almost makes the day begin. I've grown accustomed to the tune That she whistles night and noon. Her smiles, her frowns, Her ups, her downs Are second nature to me now, Like breathing out and breathing in.

For those of you not familiar with this wonderful song or the movie My Fair Lady, I attached this link for you to see the clip. http://www.youtube.com/watch?v=HroAq_E075Y

I spent part of my afternoon today with Mary, Ann's mom, and Mary's caregiver, Shayla. I think having lunch together and then chatting was wonderful stimulation for Mary. Mary and I sometimes reflect on the fact that we have only known each other for two years, and yet it seems like much longer. Or as she says, "a lifetime."

There were many aspects of today that left me teary. This evening, I spent about four hours at two different hospital meetings. The first meeting was about creating a grief and bereavement program at the hospital for families who lost a child. Three other families were in on this meeting as well, and as we were discussing ways to help bereaved families, I realized the word TRANSITION kept coming up. I have found that NOT all grieving parents need the same thing to heal and accept the loss. Of course that doesn't surprise me considering that Peter and I, who have a lot in common, need different things and at different times as we process Mattie's death. However, many parents find comfort and support from talking to other bereaved parents. I unfortunately am NOT one of these people. However, this brought me to my point, that the transition from living in the hospital and being surrounded by hospital support, to being cut off from this support once Mattie died was impossible to handle. As I explained to the hospital employees tonight, many people from my outside world do not always understand me. Some do not understand the chaos and trauma I lived through and continue to deal with, and most of all, it is hard for friends to sit with someone who is sad, depressed, and/or crying. Which is why follow up grief and bereavement services are NEEDED at the place of treatment.

Before I went away on vacation, I worked with Dr. Aziza Shad on writing a grant to establish a grief and bereavement program at the hospital. Though the grant was beautifully written, the corporation offering the grant summarily denied it. NOT because of the grant itself, but the content. They did not want to financially support a program that doesn't directly impact a sick child. I can not tell you how disappointed I am to hear this response and to learn of this corporation's perspective. However, this is NOT just this one corporation. Grief and bereavement issues are in a way taboo issues in our American culture and certainly they are not very enticing to support financially. So we will continue to look for other funding options.

However, I found the meeting about grief and bereavement very emotionally jarring. Toward the end of that meeting and into the next one, I was crying. So overall, it has been a challenging day, which seems quite fitting for a Tuesday. I would like to end tonight's posting with a message from Mattie's oncologist and our friend, Kristen. Kristen wrote, "Know that you are thought of often and by many. Much love this Tuesday and everyday."