Monday, July 12, 2010

Monday, July 12, 2010

Tonight's picture was taken in June of 2003. Mattie was over a year old and full of life and energy. Mattie was our child who NEVER slept. He did not like napping, and sometimes I wondered whether he did not want to go to sleep because he thought he was going to miss out on the fun. It seems so unfathomable that a child with his energy, life, and spirit, could be consumed by cancer in a year's time.

Poem of the day: On the Inside by Charlie Brown


I know to you
I look calm
But inside is
The eye of the storm
A tornado spins
Within my head
All is chaos
Because you're dead
I mostly hold
My tears inside
The extreme sadness
I try to hide
But sometimes
It gets away from me
Then a glimpse of my tragedy
Is what you see
But only a glimmer
Of the intense feelings inside
I wish I could get off
This long, painful ride.

As you know from last night's blog, I received two beautiful oak tree related gifts yesterday. Today, I received two more gifts. The first gift was given to me when I went out to lunch with Katharina and her mom, Tanja. Katharina is on crutches and is doing very well. She is also in good spirits, considering she will be on crutches for a month. Katharina created a memory book, and I must admit this gift surprised me. On the front cover of the book, she drew a beautiful sun, using all of Mattie's favorite colors. I wanted you to be able to see the cover, so I took a picture of it for you. The title of the memory book is, "Mattie, his fight against osteosarcoma, and me." Katharina dedicated the book to Mattie, myself, Peter and all our family. In the book Katharina shared many memories she had from her times playing with Mattie. It was lovely to see them captured on paper. However, in Katharina's first page of the book, she talks about how Mattie's diagnosis impacted her. It seems that whenever she would think of complaining or wasn't happy about something, she would pause and think about what Mattie was going through. In essence, his cancer, made her re-evaluate her own thoughts and feelings, and she was able to see how lucky she is to be healthy. That is a very powerful statement and revelation from a ten year old. This gift made an impression on me, because it captures special times with Mattie, but it also illustrates to me that Mattie's cancer deeply affects all our lives, even the lives of his young friends.

The second gift I received was from Lauren. Many of my blog readers know Lauren. She is 12 years old, and was diagnosed with osteosarcoma around the same time as Mattie, July/August of 2008. I became connected with Lauren's mom, Carey, through e-mail, since Lauren was receiving treatment in Pennsylvania. I am happy to report that Lauren has No Evidence of Disease. For Lauren's end of school year project, she decided to create a project entitled, "Bows for Hope." The bows were hand assembled out of duct tape by Lauren and three of her friends. Each bow was sold for about 50cents. The beauty of this project is it took off, it energized her middle school, and united them around a cause. The week of bow sales, I received several e-mails from Lauren's teacher. She couldn't get over the number of children lining up outside her classroom each day to purchase bows. Lauren is a true example of how one person can and DOES make a difference. I admire Lauren's commitment to helping other children battling cancer, and instead of retreating (which could be easy to do after a cancer diagnosis), she is being proactive in letting others know about the disease. Lauren has educated her community about Osteosarcoma in a creative and meaningful way.

Along with the bow that she sent me (you should know that behind the duct tape bow is a bobby pin), Lauren also wrote a beautiful hand written note. The note says:

Dear Mr. and Mrs. Brown, I am pleased to present you with a check for $634.42 for your Mattie Miracle Cancer Foundation. As you know, I raised the money through my school by selling duct tape hair bows. It was a hit and my fellow students were very generous with their contributions. I can't think of a better cause for my donation. My hope is that other osteosarcoma children will have an easier time with the help of your Foundation. Love, Lauren

Lauren's end of the year project was an amazing fundraiser for our Foundation. I told her mom that Lauren should be an honorary member of our fundraising committee. I deeply thank Lauren for her hard work, vision, and passion to help other children and their families with cancer. I also am very grateful to Lauren's parents, teacher, and entire school community for supporting this remarkable project.



I had the opportunity to spend some time with Mary (Ann's mom) today. When I first arrived, Mary seemed sad and tired. However, as we began talking and I reoriented her to the day and where Ann was, I could see her perking up. It only further illustrates to me the power of a connection. It can be a very healing factor. We talked about Ann's trip, Mary's time living in Massachusetts, and the upcoming visits that her family will be making to see her this summer. Mary is greatly looking forward to these visits! While chatting with Mary today, I was looking out the window. A beautiful monarch flew by, minutes later, it flew by in the opposite direction. I look at these butterfly sightings now as a sign from Mattie. A sign that he is thinking of me, but that I am also in the right place at the right time!

Tonight, I received a text message from Brandon's mom, Toni. As many of you know, Brandon was Mattie's big buddy at the hospital. Toni let me know that Brandon's birthday is tomorrow, July 13. Brandon has decided he wants to try sky diving as his birthday gift. I told Toni, that Sean Swarner needs to move over, because here comes Brandon. Brandon..... Conquers cancer, and now taking on sky diving! Brandon is doing this in tandem, so an instructor will be jumping with him. For all my readers who have followed Brandon's story over the years, please keep him in your thoughts this weekend, as he takes this very adventuresome plunge. Toni also told me that she and Brandon were walking today, and right in their faces flew a monarch butterfly. Toni felt that Mattie was wishing Brandon a happy birthday! The symbol of the monarch has taken on great meaning to so many of us who were touched by Mattie's life.


I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I see many repeating patterns as you walk your path; nature especially trees, butterflies and the breeze that moves your wind chimes. Living in the city it is not so common to see these things, so for them to crop up over and over again in such a myriad of ways has to be a connection to something bigger for you. If I were a practitioner of a Native American religion or a druid I would say that the acorn and the butterfly have become sort of totems or sacred symbols in your life. I find it interesting that both of those start with something that is almost impossible to recognize when it is mature. In that way, they reflect what Mattie has become as he has transitioned to something beyond us but clearly still a force in your (and many others) lives. Sometimes when we practice, the instructor talks about the internal practice, the seeing with the "third eye" which sees within the spirit. As I practice today, I send you strength for your internal vision to help you find your way and to continue to see Mattie's spirit reflected in your life. I hold you gently in my thoughts."