Monday, October 26, 2009

Monday, October 26, 2009

Tonight's picture features my assistant chef. Mattie was my helper and he especially loved when I made him homemade waffles. He would be my mixer and he patiently awaited while I added each ingredient (flour, eggs, baking powder, etc), to the bowl. Clearly I have resumed cooking now, but things are NOT the same in the kitchen without Mattie.

Poem of the day: Are You There? by Diane Robertson

Misty breeze wraps about my shoulders, thinly clad.
I shiver not, despite the coolness on my skin.
Comfort, I now feel.

Is it you my precious Angel?
Are you there? I cannot hear your quiet voice, But bird song fills the air
From high treetops to grassy marsh.
I wonder – is it you, Dear? Are you there?

The roses in your garden bloom large,
And varied in hue from crimson deep,
to barely pink.
I cup the velvet bud, its fragrance soothes a troubled mind.
This must be you, my little boy.

Are you there?Are you the fiery autumn maples,
Or the star-like flakes of snow?
Are you the sparkle in the water of the lake that we both loved,
Or, perhaps, the warmth I feel in the sand beneath my toes?

Though your quiet voice I cannot hear,
Nor can I see again your sparkling eyes,
Or feel your dainty hand laid gently on my own,
You are here.

For memory's book will never close –
Each lovely sound, or sight, or scent,
Another page from special times that we have shared.
Oh, yes! You are here child – everywhere!

I was invited to Joan Holden's home this morning. Joan is the head of Mattie's school, St. Stephen's and St. Agnes School. Joan was very kind, thoughtful, and generous with her time today. As I had tea with Joan, I had the good fortune of meeting her dog and to see her own children's Halloween artwork that she had on display. This is one of the beautiful things children give us, the gift of their love and creativity. Here is one of the times my pack rat mentality actually worked out well, because I kept most of Mattie's masterpieces over the years. I am so happy I did that.

St. Stephen's and St. Agnes has been very supportive of Mattie and my family this year, and I want to acknowledge, that from my perspective, a school is only as good as its administrators/teachers and the families who attend the school. St. Stephen's and St. Agnes attracts the best of both. Joan led by example this year. She was washing cars at Mattie's car wash fundraiser and allowed us to host a Mattie Miracle walk at the upper school campus, of which she fully participated in. Joan visited Mattie several times during his year long hospitalization, and she practically e-mailed or called Peter and I on a bi-weekly basis throughout the year. For this support, I am forever grateful.

Meeting with Joan today illustrated to me that the support for us did not end with Mattie's death. We spoke about so many things, but Joan wanted to make sure we knew what a great job we did with advocating and caring for Mattie. I may appear like a person who doesn't need much positive feedback, and for the most part (under normal circumstances) this may be true, but under times of great vulnerability, having someone say to me.... you did a great job, is very healing. Especially when our battle landed up with Mattie dying. Joan and I spoke about Mattie's blog and she encouraged me to write a book. I admit this is something I have thought a great deal about, as well as other shorter educational awareness pieces that could be downloaded from the Mattie Miracle Cancer Foundation website that would hopefully be helpful to the next family down the line. There was SO much I had to learn and if I can save another family a few steps in the process, then to me, I will feel a sense of accomplishment.

I know I have used this analogy before on the blog, but as I was talking to Joan today, I feel very confident in saying what Peter and I survived this year is similar to fighting in a war. We weren't in Iraq or Afghanistan, but a PICU. Nonetheless, aspects of these environments, and living with cancer, are just as toxic. We were sleep deprived for over a year, dealing with one medical bombshell after another, no privacy or control over what was happening to us or anything around us, isolation, and the list goes on. It is no wonder besides dealing with grief, that reintegrating back into society is almost impossible when you think about the toxic world we lived in for 13 months.

Later in the day, I had the opportunity to get together with Ann and Alison. The three of us helped to reorganize Mary's room in her assisted living facility. Mary was actually very pleased with her new arrangement today and now feels as if she has both a bedroom and a separate living space. It was nice to know we made her happy, and before I left, Mary told me that she hopes I live a long, happy, and healthy life. I told her that was very nice of her to say, but she quickly responded that I have paid my dues by losing Mattie, and that I should not be subjected to any more pain or heartache. I found her sentiments very touching and heartfelt. It is interesting to me how two women, Mary and myself, who are SO different in age, can actually have this mutual admiration for each other. But I think cancer and losing a son can do that to people.

When I got home this evening, I made dinner, and instead of doing this alone, I had Peter in the kitchen with me. We chatted throughout the entire cooking process as well as dinner, and we are working hard at trying to find and define our world now without Mattie in it.

I would like to share the Mattie tribute Joan Holden (Mattie's head of school) delivered at the funeral. Mattie was only a student at St. Stephen's and St. Agnes for one year, yet through his journey he clearly left a lasting impression on his community.

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Joan Ogilvy Holden's Tribute to Mattie

First let me say what an honor it is to be asked by Vicki and Peter to represent the St. Stephen’s & St. Agnes community this afternoon. Secondly, and I want to address this directly to Vicki and Peter, please know how much Mattie, who was bright, curious, creative and I must admit one of those Kindergarten students who just always seemed a step if not two, ahead of me, was loved by our school. From the moment we learned of his illness, St. Stephen’s & St. Agnes, as well as several other area communities went into action. As we did so, we all quickly learned the tremendous impact Mattie was making on his teachers, administrators and fellow students in the short time that he was with us. I am reminded of the time a colleague was introducing Mattie to our boys Athletic Director and head varsity football coach, Mr. David Holm. Not sure exactly the best way to introduce him, my colleague decided to introduce him as his friend Dave, Mattie looked up without a moment’s hesitation and very naturally said “Hi Dave” and put out his hand to shake. Mattie became an honorary member of our Saints football team. Mattie and Coach Holm formed a deep and meaningful relationship. This is an example of a very human moment. Mattie Brown showed us over and over again the beauty, the power, and depth of the human moment.

In addition, to being a school that honors great academic achievement, we also honor something just as important. We honor hope and faith. Everyone struggles with the questions that Mattie’s illness and death raise. I will not try to offer any easy answers. Instead what we are doing this afternoon is reminding ourselves that Mattie’s life had meaning and purpose. As an educator, I feel Mattie was a true teacher. He taught us courage, perseverance, resilience, humor and faith. I am convinced there is more love in the world today because of Mattie Brown. When Mattie became a member of our St. Stephen’s & St. Agnes School community, Mattie heard the phrase all of our students do. That he is a child of God. Mattie was and is a child of God. And as a child of God I feel confident in saying that Mattie is in God’s safe hands.

Our hope for Mattie is changed but it has not ended. Both his life and death will have meaning. There is an old Christian saying that goes like this “God has no hands but ours, no feet but ours, no words but ours.” This is how we learn to live in the midst of difficulty. We acknowledge the pain of the loss, yet we also remind ourselves that we need each other and that we are not alone. Our hope is found in the community. Our hope is found in those around us. Our hope is found in a God who loves us. Vicki and Peter, all of us in this room will continue to be here for you. Mattie Brown’s oh so treasured and short life taught our community how to be community. We often refer to our students as Saints. Mattie was a saint, is a saint and he will always be a saint. The warm and bright light of Mattie Brown is not extinguished, rather it is spread out, it is reflected in the beauty that surrounds us every day, or perhaps in a complicated Lego set, and it resides in each of us. This is what it means to be a child of God.


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I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I read the blog and your Mom's story of Mango Mouse definitely made me smile. I then spent several minutes trying to imagine what kind of car Mattie is driving around up there but came to the conclusion that nothing I could come up with compared to the wealth of Mattie's imagination and that now, fueled by new abilities we can only dream of, I am sure he will probably be on the welcoming committee driving new arrivals to their appointed places and taking new friends for a "spin" in his vehicle. As for anger with G-d for what happened, all I can say is that the Lord can certainly handle your anger and all the other feelings you have. In Judaism, we believe it is quite all right to be angry with G-d, to ask "why" and to challenge. What the rabbis tell us is not okay is to walk away and to become numb and unfeeling. I am not sure if that is for us or for the Lord, but either way, for mental and spiritual health, be angry, be free to feel, to cry, to challenge, to ask or whatever comes up. The supreme one can handle it and we need to do it. Today, give yourself permission to do whatever it is that you need to do."