Thursday, January 14, 2010
Tonight's picture was taken when Mattie was a year old. Mattie was desperately trying to learn to walk by that point, but he needed extra support and time. Mattie began to walk independently at 16 months of age. The irony is that at 3 and 4 months of age, we could hold Mattie under his arms, and have his feet touch the ground. When we did this, he would literally start walking (almost running!). He would put his feet firmly on the ground and just started putting one foot in front of the other. Naturally he wasn't strong enough to really walk without us, but he loved that motion and would do this over and over again. Developmentally I know babies can have a primitive walking reflex, but in Mattie's case his desire to repeat this motion over and over again gave him great joy and it thrilled us to see his enjoyment.
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 him and begged him to stay,
but he slipped away like the ocean at low tide,
receding into the blue distance till he 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...
Charlie sent me this poem today, and as I read it, I began to see it resonated strongly with me. Mattie's cancer journey and death has been a series of "Doors." Naturally when life presents you a door, you either turn around and walk away, or you open it and walk through. Unfortunately when cancer came knocking, we had no choice, we had to walk through this door. There was no question about this door, because we had to attempt to do whatever was earthly possible to try to save Mattie's life. But throughout his 13 month journey, many doors presented themselves. Many of which I hoped never to have to face ever in my life! Moving forward with each stage of treatment was cumbersome and difficult, and it seemed with every scan result, more depressing news was revealed. Yet despite what we had to face, moving through each of these doors, was a family journey. Mattie, Peter, and I moved in tandem, without skipping a beat. Going through this crisis brought us closer together in many respects, and watching Mattie greet each challenging day, was indeed the purest picture of HOPE. There were days, I would look at Mattie and wonder how on earth he survives, handles, and copes with all that we ask of him. His treatment was toxic, debilitating, and disabling. It was through his frail and disintegrating body, I saw his true inner strength and character shine. Yes I was helping Mattie each day, but he was also helping me. His smiles, hugs, and trust were powerful motivators. All the doors we had to walk through make his death extremely tragic, because, how does a bright spark, who fought Osteosarcoma with amazing spirit and courage, get extinguished so quickly? I continue to grabble with this question, and most likely will for the rest of my life.
I met Ann for lunch today, and we had a chance to catch up with each other, since she was away earlier in the week. Today was her dad's birthday. The first birthday she was unable to celebrate with him since he died in October. I can't even fathom how this feels, and I do try to empathetize, especially since I am already concerned about how I will feel when April 4 (Mattie's birthday) comes around. There was a feeling of sadness about the day for me, and though I did not know Ann's dad very long, our time together was intense toward the end of his life. Helping someone die is a very powerful experience, and as he was dying, I could see he wasn't worried about himself, but his daughter. He wanted to know that Ann would be okay, and in his more lucid moments, wanted me to promise to look after her (not that she needs looking after, she is very self sufficient; but once a parent, always a parent, we naturally worry about our children no matter their age!). Ann's dad, Sully, knew how much Ann helped me with Mattie, but he also wanted to acknowledge me. Sully appreciated my help in the end, and expressed his gratitude especially since I had just lost Mattie. Sully was a very honest individual, and had no problem telling you how he felt, and certainly as he was dying, I wanted him to know that my friendship with his daughter was not time dependent. That it wouldn't expire after I helped her care for him, that seemed to comfort him. I will never forget the dialogue we had that particular night (sitting in a very dark room), it remains very vivid in my mind. It seems fitting on his birthday, that I share with you the special man that he was, he deeply loved his daughter, and the kindness he showed me helped me greatly during those tender weeks after Mattie's death. You must also remember that Sully and I had another commonality, we both lost our sons to cancer, and he understood the depths of this pain all too well.
When I got home this afternoon, I felt physically exhausted. So in those moments, I know I have to retreat. I went to lie down and regroup. Peter had a late night at work, so I started the blog earlier in the evening. As I was writing, I was deeply reflecting on Charlie's poem that is posted tonight. It somehow expressed everything I was feeling, and therefore while reading it I began to cry. Typically poems do not move me to tears, but this poem was about the cancer journey, and somehow captured the depths of sadness that Peter and I live each day. It is in moments of sadness, as I told Ann today, that I can't see a way out of the pain. That I feel the pain will always be there, and perhaps this is the best life has to offer me into the future. Ann always tries to acknowledge my feelings, and allows me to feel however I need to feel, but she also works hard at providing me with some hope. She was our Team Mattie coordinator and was always my angel of hope during the ordeal, but now her role from my perspective is much more complex. How do you help me pick up the shattered pieces of my life? I don't know, this is a door I am still trying to find!
I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "I am so glad yesterday was a positive day for you. I think joining a book club would be a nice way for you to forge a new connection with some people who were originally connected to you as a mom because of Mattie's illness. Although you are worried about your ability to concentrate, the pace of a book club will usually give you plenty of time and this is not technical material that requires such an indepth level of understanding anyway. It was nice that you and Peter had an evening with lots to talk about; I know that during Mattie's illness you both got out of the habit of talking and sharing because he could not handle the sound. These are all very positive steps and tell me how hard you are working to process your grief. I hope you continue to find bright spots in your day to help see you through the grey times. I hold you gently in my thoughts."
The second message is from a former student of mine. I have had the pleasure of seeing Betsy twice at the ice skating rink that Ann takes her daughter to. Betsy wrote, "I just read the blog and wanted to express what a wonderful, strong, giving, compassionate and amazing woman you are. You continue to give to others in need, even when you are in great need yourself. I know this is an unfathomably difficult time for you, yet you continue to go to children's birthday parties, help those who are sick, help upcoming professionals, etc. Please recognize the gifts that you have and be proud of yourself. You may not recognize it because you are so buried by pain right now, but your gifts are shining through - the same gifts of compassion, empathy and creativity that Mattie inherited from you. And he continues to be so proud to call you mom. I hope you have some happy moments today."
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