Sunday, September 13, 2009This photo of Mattie was taken on a beach in Florida. You can see that Mattie was in the process of creating an alligator in the sand. The tail of the gator is behind Mattie, and the gator's eyes are huge and are directly in front of him.
Poem of the day (Thank you Julia!): The Door by Donna Weigel
I dreamt of you last night and awoke
with overflowing pain and fresh understanding…something like an epiphany of the heart;
Funny how we go through life not seeing where we really are,
sometimes standing in the middle of a golden moment and not recognizing it;
When you became sick I began to see,
that in life there are doors we must open;
There came a knock at your door one fateful day
and when we opened it we found an insidious serpent….cancer;
We drew our mental swords and began to fight;
In the days and months to come we opened many doors,
always together because we loved you so…
Fear knocked often, gnashing its horrible teeth and biting our hearts;
At times it overwhelmed us all,but it also bound us inextricably together;
Some of us found Faith on the other side of that door,
and we discovered what a slippery slope we had to climb;
Some precious days Hope would visit us,
always in the form of a frail, small child;
We clung to her and begged her to stay,
but she slipped away like the ocean at low tide,
receding into the blue distance till she was no more than a small speck on the horizon;
We lost our fight to save you…
when too soon we opened the door and found
Death waiting there for you,along with his whole cast of characters;
With him came Grief, Despair and Utter Sorrow,
blotting out the sun which had shown so brightly while you were here with us;
I found a deep well of sorrow within my soul that day,
As I held your hand and watched you,
drifting off into the weary arms of Death,your light slowly going out…
Though some time has since passed
and eased a small fraction of my pain,
yet the smallest of reminders draws up a bucket
from that deep well within me,
its cold contents spilling out to cover me in fresh sorrow,
I miss your face,
your warm embrace,
your love will never leave me…
It is 1:30am, and Peter and I are still up and WIDE awake. What explains this? Who knows, maybe it is grief, living in a PICU for 11 months, or the intense stress of having a child diagnosed with a rare form of cancer and then a year later having to watch him die. All of these things together are a volatile combination! One of my mentors from GW sent me an e-mail tonight, and he asked me how do I go from the intensity of caring for someone 24 hours a day, seven days a week, to nothing? Great question, I have no answer, and may not have one for some time! All I know is that for Peter and I our world is askew and nothing seems right, feels right, or is right.
I have found for me the only saving grace I have right now in my life is the thought that I am being somewhat helpful to Ann. Peter and I both spent time with Ann's parents today and helped them with dinner, I did Mary's (Ann's mom) nails, and provided them with some companionship to help break up their long days in their assisting living facility. Each time Mary sees me, she comments on the necklace I am wearing. She can't believe that Mattie actually made it with his own hands. In fact, yesterday I took the necklace off from around my neck so she could feel the beads and examine Mattie's bead selection choices more closely. I was touched that Mary was so interested in his creation, because I figured it only meant something to just me. When you lose your child, your world in a way flips upside down. You lose sight of who you are, what your priorities are, and it becomes easier and easier to slip into further isolation. Going to help Mary and Sully (Ann's dad) pulls me temporarily out of my funk and enables me to focus on helping someone else, and in the process of helping them, they are ultimately helping me. They are giving me a purpose, direction, and in a way they are telling me they trust me to do the right thing for them when Ann is not there (because Ann is caring for her three children).
As I was driving home tonight, I reflected on several things that I have learned about myself. The first of which is after experiencing Mattie's devastating illness, I have concluded that I am no longer fearful of getting profoundly sick or even dying. I have seen how my precious seven year old died before my eyes, and maybe because of the compassion of the nurses around him, I have come to peace with the process of death. It demystified it for me. However, the second revelation is a little more daunting. I have come to the conclusion that I feel most understood and comfortable in the world of the sick and the dying. These are concepts I live and breathe, and to some extent feel as if I no longer feel understood in the healthy and well world.
We would like to thank Charlie for a wonderful lunch and the Petersen family for a wonderful home cooked meal. We so appreciate this incredible level of support. Thank you Karen for the wonderful pie and apples from the farm.
As many of you know Mattie's obituary was published in the The Washington Post today. I included a link below in case you did not read it this morning. Here is what my mom had to say about the obituary. My mom wrote, "We read the Obit and neither one of us had dry eyes afterwards. It was beautifully written and could only have been crafted by a loving and devoted mother like you. Looking at the picture of Mattie with his captivating smile and gorgeous face, we confronted the inevitable question that haunts our thoughts through each of these sad and troubling days and that is why the promise of life so evident in that photo was destined to be snuffed out like a candle whose wick had betrayed it so that it could no longer sustain its precious light. That picture was taken in May 2008 on Grandparents' Day at SSSAS and we remember vividly how excited Mattie was to share his Kindergarten experiences with us and how he proudly introduced us to the faculty and staff that made his time there so incredibly happy. Little did we know then that his life would be cut short and that he would not live long enough to ever attend SSSAS again.. As we gaze on that beautiful face full of life and promise, we realize how much that is precious in life is taken for granted until it is taken from us."
Mattie's Obituary in The Washington Post
http://www.legacy.com/washingtonpost/DeathNotices.asp?Page=SEARCHRESULTS
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