Saturday, October 24, 2009

Saturday, October 24, 2009

Tonight's picture fascinates me, because I always wondered what Mattie and Anna (his physical therapist) were talking about when this picture was taken. I wasn't present for this therapy session, in fact I believe this was one of the days I received more bad news about Mattie's condition and Linda (Mattie's childlife specialist) was kind enough to stay with Mattie during physical therapy and to take this photo. What I love about this photo is it captures the art of negotiation that ALWAYS took place between Mattie and Anna. They both learned so much from each other, and it was a beautiful process to watch their relationship unfold.

Poem of the day: The Cord

We are connected,
My child and I,
by An invisible cord
Not seen by the eye.
It's not like the cord
That connects us 'til birth
This cord can't been seen
By any on Earth.
This cord does it's work
Right from the start.
It binds us together
Attached to my heart.
I know that it's there
Though no one can see
The invisible cord
From my child to me.
The strength of this cord
Is hard to describe.
It can't be destroyed
It can't be denied.
It's stronger than any cord
Man could create
It withstands the test
Can hold any weight.
And though you are gone,
Though you're not here with me,
The cord is still there
But no one can see.
It pulls at my heart
I am bruised...
I am sore,
But this cord is my lifeline
As never before.
I am thankful that God
Connects us this way
A mother and child
Death can't take it away!


Peter began his day by walking from our home to Roosevelt Island. When he returned he shared with me a beautiful leaf and two acorns. Why? Because this is exactly what Mattie would have done for me. Mattie was always bringing me some sort of gift from nature. When Peter handed me the leaf and the acorns, he did not need to say anything. The message was loud and clear. The message was two fold, which was here is a gift from Mattie, he would want you to have this, and second, most likely Peter was telling me he missed Mattie and had to take a walk.

We had breakfast together (which doesn't happen during the work week) and while eating Peter turned on a music channel through our satellite TV that plays musicals 24 hours a day. I have always loved musicals since I was a little girl. Perhaps this was because my parents exposed me to the beauty of musicals starting at a very young age, or the simple fact that I love music, especially music with a purpose. The beauty of musicals is they tell a story usually about people, emotions, and human dynamics. I made great efforts to try to pass this love along to Mattie, and I felt successful, because he too loved music. In fact when he heard music, he couldn't contain himself, his body had to move. This morning the song, Edelweiss (from the Sound of Music) started to play. I have no idea what came over me, but that is all I needed to hear. I began to cry. When Peter asked me what I was thinking about, my response was I regretted that this was not a musical Mattie ever had the chance to see or really hear. Later in the day, the song, "I don't need anything but you" from the musical Annie was playing. That too sent me right back into my crying state. Mattie loved this musical, and even saw it performed at his school. There have been many moments this week that have sent me back in time and reflecting on Mattie's loss. This is very new for me because prior to this week I was unable to even let my guard down enough to feel these emotions. Nonetheless, when I do feel these moments of sadness, great emotional pain takes over, and I am left pondering why Mattie died and how do we go on without him.

I had the opportunity to have lunch with Tamra and one of her daughters, Meredith, today. Tamra has been a major Mattie supporter this year, and also was one of our co-coordinators of Mattie's Celebration of Life Reception (which took place TWO WEEKS AGO today!). I told Tamra that I will never forget her support for us this year. I also reflected on an interaction we had together the day before Mattie died. Tamra came to drop by breakfast and tea for Peter and I in the PICU. She came into Mattie's room that morning, took one look at us and at Mattie, handed me the items, gave me a hug, and turned around and walked right back out the door. We said NOTHING to each other during this two second interaction. Nothing needed to be said. The hug said it all, because all three of us could see Mattie was dying. This non-verbal interaction remains etched in my memory because I thought it spoke volumes about Tamra's level of understanding of the situation and of our feelings.

We had a delightful lunch and what makes this special is I am having these wonderful opportunities to get to know people who have been supporting my family all year long. Tamra and I really did not know each other before Mattie developed cancer, but she (like so many of you) know so much about me from the blog, and I view this point in my life as my chance and good fortune to get to know you all better. Tamra's daughter, Meredith, is a junior at Mattie's school. Meredith had the opportunity to help me with Mattie a couple of times, so that Peter and I could go out to dinner. Mattie had a great time with Meredith and her sister, Louise. Meredith chatted with me today about some fundraising ideas she has for Mattie's foundation. I was very touched by her thoughtfulness and most impressed with her level of maturity and sensitivity. She did tell me that when she played with Mattie she felt as if she was interacting with a peer rather than a child. I found this comment to be very perceptive and made me smile.

Later in the day I went to the mall to return several items I purchased a while back. Selecting to go to the mall on a rainy Saturday with a migraine headache wasn't too smart, but I felt the need to be productive. While at the mall I bumped into a colleague of mine. This colleague and I had presented at several national conferences together on a topic that I developed over the years. Because I have been solely focused on Mattie this year, two of my colleagues decided to take the topic I developed and turn it into a book proposal, which apparently he tells me just got accepted. Now if you told me this good news prior to Mattie getting sick, I would have been thrilled. After all this was one of my goals for this topic. Certainly I am still thrilled, but my feelings of thrilled are a bit different these days. In fact, my feelings about anything are skewed. It is my hope that my colleague understood my less than enthusiastic response, because in all reality as I am processing Mattie's loss, nothing right now seems manageable, doable, or even interesting.

I received an e-mail tonight from a colleague and friend of mine. Denise let me know that she was traveling today and while on the road stopped at a Dunkin Donuts! She told me that she can never look at a Dunkin Donuts store now without thinking of Mattie. She even quoted the song that got us through the first few months of chemotherapy, "One Donut a Day." Some of you may remember this catchy song, featuring a dancing vanilla frosted rainbow sprinkled donut, which was Mattie's favorite! Thanks Denise for writing today and letting me know that you were thinking of Mattie!

I would like to share the Mattie tribute that Bob Weiman delivered at the Celebration of Life ceremony. Bob was Mattie's head of the lower school of St. Stephen's and St. Agnes School. However, to many of you, Bob is the magic man, the man who shared his skills and time with Mattie. Mattie loved learning magic. He liked the intellectual challenge of learning a trick, and the art of performing it. Mattie also loved the fact that this made him unique and interesting, and when he performed, people focused on him and not his disabilities.


=========================================

Bob Weiman (Mattie's head of the lower school) Tribute to Mattie

Over the past couple of years I had the honor and pleasure of knowing Mattie Brown. As the head of the lower school at St. Stephen’s & St. Agnes, I remember Mattie as a kindergartner. He always had a twinkle in his eye- sometimes it was a twinkle of knowledge when he knew the right answer during circle time. At other times it was the adorable and impish twinkle of a boy who liked to have fun with his friends inside the classroom and outdoors. Last year and during the summer I was fortunate enough to be able to spend time with Mattie, and I was able to witness and experience the different facets of this special boy.

I got to know the perceptive and wise Mattie- Mattie knew what was going on at all times. There was no getting around that. Even when he seemed like he was not paying attention, he was listening and processing and eventually questioning. Mattie would have made a great spy.

I got to know the strong Mattie- Mattie had to endure so much, and he was a trooper! If one arm wasn’t working, he’d use the other one. If both weren’t working, he’d use his toes as well as most people use their hands. He was tough and adaptable. He was also strong in another way. Mattie was an extraordinary self-advocate.

I got to know the fun-loving Mattie- even when not feeling great, Mattie could be very silly. What joy he gave and experienced by sharing (often through the element of surprise) gross bugs and other disgusting creatures with his family, friends, nurses and other unsuspecting victims. Since I share this brand of humor, spending time with Mattie was right up my alley.

I got to know the creative Mattie- Mattie had a fertile imagination. He enjoyed dreaming up various characters and scenarios. And, as everyone knows, he also loved to construct amazing structures out of Legos and boxes. What a prolific and persistent builder he was. The architecture and engineering worlds have certainly lost out.

And I got to know the magical Mattie-for me the greatest joy was watching Mattie perform magic. I was so proud of him. To every trick he added his own dramatic flair. He also demonstrated his intelligence as he learned a multi-step trick called the Cups and Balls, which is usually reserved for middle schoolers. He amazed his nurses and brought joy to other patients at Georgetown with his great performances. Every year I teach the 5th graders magic and I phase out one trick and introduce a new one into the routine. This year I will teach the Peanutbooger and Jelly trick that Mattie and I learned together.

Mattie and Vicki and Peter’s fight against Osteosarcoma has taught me a lot. It has taught me what is important in life. It has taught me how to advocate and fight. It has taught me that it is okay to be silly even when (or especially when) things are very serious.

Mattie touched so many people’s lives and brought so many people, so many communities, together. Mattie’s goodness and positive spirit will live on in all of those who knew him.

A couple of weeks ago, when I was at synagogue observing Yom Kippur, I said a special prayer for Mattie known as Yizkor, or a prayer of remembrance.

This is the prayer:

May God remember the soul of Mattie who has gone to his eternal rest. In tribute to his memory I pledge to perform acts of charity and goodness . May the deeds I perform and the prayers I offer help to keep his soul bound up in the bond of life as an enduring source of blessing. Amen.
============================================


I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Thank you for posting Debbie Pollak's tribute. How wonderful to hear how Mr. Sun was created, I can "see" Mattie in my mind's eye "twirling like a leaf in the breeze, brushing with gusto"Debbie, you paint with words as well as with art materials, thank you. As for your day yesterday Vicki, I can just imagine how difficult it was to go past the campus and know that Mattie should be there with his friends but is not. I don't believe you ever get over the death of someone close, especially that of your child. You go on, you may be able to place a cover over your feelings so that you look all right to those who don't know you well enough to know how you feel but you don't "get over it". You survive, you look for ways to "make meaning" of your life, and you try to live in a way that honors that memory. I think that is the best one can do. In Mattie's short life, he reached far more than many of us as adults do. He made connections with so many people, some close to him like his family, friends and teachers and some who rarely if ever actually saw him, but his impact on all who were drawn into the circle of the dance of his life, was profound. Today find time to think about circles and Mattie, the sun and the moon, the circle dance of his being and the interconnectedness of all who held hands to celebrate him. I hold you gently in my thoughts."