Tonight's picture was taken in July of 2007. Mattie was five years old. He climbed one of his favorite rocks at Roosevelt Island, and we snapped a picture of him at the top. Mattie was always a very cautious child, however, after spending two years in preschool, he began to venture out beyond his comfort zone, and learned to enjoy climbing, jumping, and running around. Roosevelt Island was a special place for Mattie, and continues to hold special meaning for Peter and I. It is hard to believe three years ago Mattie was healthy, happy, and seemed to have a bright future ahead of him.
Poem of the day: Losing a Piece of Me by Tammie Thompson
Imagine someone has opened your chest with clawed hands,
grabbed your heart in a crushing grip and torn it from your body.
But you do not die. You remain alive, in agony.
Agony that will continue for days,
weeks, months and years.
This is what it feels like when your child dies.
This is how I felt when my son Dale died,
age two years and one day.
To hold the limp body of my precious child in my arms
and feel its emptiness was pain that defies words.
I sat cradling my beautiful child, knowing that I
would never again see his smile,
hear his laugh
or feel his hand clinging to mine.
I would never again hold his warm body close and
breathe in the scent of his hair. I would never
know the person he would have grown up to be.
I walked from the room knowing that I had seen
and held my child for the last time ever.
I wondered why I still lived,
and how I was supposed to keep going.
I wanted to die; I wasn't suicidal - it's just that
the only way to end my pain was death,
and I ached to hold him in my arms again.
Never again will I feel 'whole'.
My whole future is flavored by the loss of my son.
A part of me went with him,
and a gaping hole exists that his warm
presence once filled.
I asked questions that no one could answer;
Why did he die?
Why not me instead?
Death has struck close to me once -
what if it happens again?
What do I do now?
How will I manage?
Why am I still here?
I rode an emotional roller coaster.
One moment I felt I was managing well -
the next I was curled up in a corner
pleading with God to take me, right now.
I went for long periods where I did well and thought,
"Okay, I've accepted it."
Then out of the blue, it hit me anew -
"He's dead. God, he's really dead."
And I began a new round of grieving.
Gradually, I found that the lows
weren't quite as low as the previous ones,
and that I rose from them quicker.
Then just when I thought I was cruising on a level piece of track,
it dropped out from under me yet again.
I did this over and over and over,
but living with it gradually became easier,
and I even found that I could live a 'normal' life again,
although it was a new normality.
I will never forget Dale.
He will live forever in my heart
and in my memories.
Death makes him no less a part of our family.
Living with the fact that my child has died
does not mean forgetting.
It means knowing and accepting that he is gone,
but still holding close those precious memories.
It means that my love for him does not change,
but that I don't allow my grief for his death
to over-rule my life forever.
It's about remembering that Dale would not expect
nor want me to spend the rest of my life
in misery.
My new normality is not necessarily an unhappy one.
Dale's life and death is part of what makes me who I am.
It has had an immense impact on the way I look at life,
and although I wish he was still here,
I know that I have grown from my experience.
Dale's official date of death is the 2nd of January, 1995,
the day he was taken off life support,
but I tend to think of the real date of his death
as the 31st of December, 1994,
the day he drowned.
Even though his heart had been started again,
he was gone.
As I write this, it's the 30th of December, 1998;
Dale's 6th birthday.
I wonder what he would look like now,
and imagine him playing with his brothers,
even as I sit here writing about his death.
We tend to celebrate his birthday rather than his death-day.
To us it's more important that he was born than that he died.
We choose to celebrate his life,
not his death.
It means more to us
that he was here
than that he left.
Remember?
Always.
Love?
Eternally.
Forget?
Never
Losing a piece of me is a poem that speaks very loudly to me. I relate to the pain this mother is expressing, however, for those of you who have managed this long journey with me most likely know the two words that set me off in this poem. If you guessed, "new normality," then you get a gold star. There is something about that terminology that rubs me the wrong way. I did not care to hear it when Mattie was first diagnosed, and I certainly do not care to accept it now that Mattie is gone. If you look up the word normality in the dictionary, you will see that it means specifically: conforming to the standard or the common type; usual; not abnormal; regular; natural. Keeping that in mind, you can clearly deduce that there is NOTHING normal or natural about a child developing cancer and/or dying. You will find no example of either of these issues next to the word normal in the dictionary. Therefore to tell me to psychologically accept cancer and Mattie's death as my "new" normal is beyond absurd, it is insensitive. Clearly this terminology doesn't incense other parents in the same manner as it does me, but you can rest assure that I will NEVER be using this phrase when working on behalf of the Foundation to help children and their families through their cancer journey.
Despite waking up and feeling extremely fatigued, I decided that I was going to get up and out of bed today, and go visit Ann and her mom, Mary. Before meeting up with Mary, I went to Ann's house to check on her garden. I was worried about my green friends while I had been sick this week and unable to care for them. While I was outside weeding, I met up with Ann's neighbor, Tina who was walking her dog. Tina introduced me to Max, her labradoodle. Max and I got along splendidly and Tina tells me that Max doesn't relate to everyone. Pretty soon, other dogs in the neighborhood came in to join in our social circle. It was actually funny for me to see the beauty of living in the suburbs, where people stop to chat and connect. A thing that rarely happens in the city, or at least in my area.
While shopping with Ann and Mary, I saw my friend, Denise by happenstance in the store. Today was a day about connections. Though Denise and Mary never met before, Denise was very familiar with Mary, since she is an avid blog reader. In a way, the blog has established a virtual "Mattie" community.
Ann took Mary out to lunch and in the process also invited several other friends along. This was actually wonderful stimulation for Mary to hear all of us talking and interacting with each other. Mary has known many of Ann's friends for years, so in a way it was nice for Mary to hear how these women and their children are doing. While at lunch I chatted with Tanja and Tina. Tina and I were sharing stories about making preserves and jarring them. I learned to do this by watching Peter's mom, who can transform just about any fruit into a tasty jam or preserve. So Tina and I traded stories and had the opportunity to learn more about each other. Tanja was telling us about her pet bird, Ginny. Mattie happened to love Ginny. Tanja then went on to tell me that she still collects Ginny's feathers. I looked at her for an explanation, and she reminded me that Mattie loved Ginny's feathers and in honor of him she still collects his feathers in a ziploc bag. Maybe because I haven't been feeling well, or maybe because I was struck by how Tanja remembered this, I started to cry. Tanja is used to my crying, but I observed the other women around me not knowing how to react. Mary, from across the table, also observed me crying, and not much had to be said. I could see she got it. Mary spoke to me alone at various points today. She asked me if I thought it was possible to wake up in the morning and already know that it is going to be a bad day? When she says 'bad,' she means that her feelings about her son's death will be overwhelming. I told Mary I understood and I definitely had and have many of those days. Toward the end of the visit, she also told me that she doesn't think that she and I can ever truly be happy again. That may sound depressing to an outsider to hear, but for those of us in the inner circle (of having lost a son; a circle none of us every wanted to add to our resumes), this sentiment is real and very understandable.
Later in the day, I went with Ann to pick up her youngest daughter, Abigail at camp. Abigail was enrolled in a nature camp near her home, and I had the opportunity to walk through parts of this lovely preserve. Abigail was very excited to show her mother what she made in camp throughout the week, and even walked us into the woods to show us the fort that she and her group build on their own. While waiting for Abigail to pack up her things, I observed all the children running around and the parents admiring what their children created. In a way, it is in those moments that I feel as if I am in slow motion. As if the world is functioning around me, and yet I am seeing things in snapshots and still pictures. In a way, I have been removed from this parent world, and when I try to walk into it, internally it feels awkward and uneasy. I had parents try to talk to me today about my child in the camp, I had counselors asking me which child was mine, and I answered politely, but thought..... wow if you only knew my real story. On the way back to the car, Abigail told me that she thought Mattie would have really loved this camp. She is most likely correct!
In fact, I know that Ann really wanted Mattie to attempt this camp in the summer of 2009. Or at least this was her thinking before we learned that the cancer took over his body. The beauty of Ann throughout this process was she was a ray of hope for us. Peter and I couldn't think about the summer or the future, but Ann could. She would always have me envision Mattie's high school graduation and prom. In the beginning I tried to go there, but in the course of the battle, I realized my mindset changed. In fact, my thoughts were quite accurately reflected in a passage from the book, My Sister's Keeper. In the book, the girl with leukemia is named Kate. This is what Kate's mother says, "When Kate was born, I used to imagine how beautiful she would be on her wedding day. Then she was diagnosed with APL, and instead, I'd imagine her walking across a stage to get her high school diploma. When she relapsed, all this went out the window: I pictured her making it to her fifth birthday party. Nowadays, I don't have expectations, and this way she beats them all." With Mattie's cancer, I too learned to have no expectations. That way, each crushing blow that was dealt to us during his battle did not cause additional heartache. I see that my thinking is probably in line with other mothers whose children have cancer. With that said, I did not belittle what Ann or others were telling me. I too wanted to have hope, but I learned that sometimes hope is not enough. Just living in the moment of fighting the battle that present day was all I could do.
Peter and I went out to dinner tonight, and we shared stories about our day and how we are feeling about this upcoming weekend. Peter and I visit our neighborhood restaurant often so we are familiar with the owners and everyone who works in the restaurant. Peter and I had a fascinating dialogue with one of the women who works at the restaurant. I don't care to discuss the specifics of the content, but needless to say, she got me thinking about a lot of things.
I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I grew up with Little House on the Prairie so I understand about becoming involved in the lives of the characters in the stories. I remember the storyline when Mary became blind and how it all worked out. I tried to imagine my life had that happened to me and I am sure I would not have dealt with it as well as she did. I am so dependent on what I see that it is very difficult to imagine how I would cope with life without sight. It was her existential crisis and she found her way to eventually becoming a wife and teacher of others who were also blind. It was not the life she imagined for herself but it was a life that had meaning for her and for others. I believe that is the only way to come through an existential crisis. My grandfather lost all of his family in the concentration camps. He had to find a way to continue on with his life and make meaning of it. I read a lot of Holocaust literature but I never found any answers there until I stumbled on some of Victor Frankl's quotes in other people's writings. Frankl concludes that the meaning of life is found in every moment of living; life never ceases to have meaning, even in suffering and death. "We can discover this meaning in life in three different ways: (1) by creating a work or doing a deed; (2) by experiencing something or encountering someone; and (3) by the attitude we take toward unavoidable suffering." You have to have faith that there is a future and that the future does hold meaningful work/events/relationships for both you and Peter. You have the inner spirit to do this; it is something akin to an internal "quest" to find what will bring you emotional satisfaction. As I practice today I will send you the energy to help you regain your health and continue your search. I hold you gently in my thoughts."
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