Saturday, January 28, 2012Tonight's picture was taken in February of 2009. Yes it is blurry, but because it captures SO many wonderful things, I thought it was worth posting. Notice that Anna (Mattie's physical therapist) and Linda (Mattie's Childlife Specialist) were both wearing yellow gowns. That was because Mattie was isolated to his room because it was thought that he had a contagious infection like rotavirus or even worse MRSA. Isolating Mattie to his room was BEYOND painful. It meant that we couldn't really interact with others and Mattie couldn't go to the childlife playroom (this was done to protect the other children in the units from being exposed and catching this virus). Mattie was suspected of having such contagions at least five times during his treatment. These times were sheer torture for us, it was truly like being imprisoned (since the hospital rooms are VERY TINY). However, on this particular day, Anna and Linda brought in all sorts of games for Mattie to do, to get his body moving. Here Anna was demonstrating a rocket that Mattie could shoot up into the air by stomping his foot on this orange pedal. For you or I, this would be VERY simple to do. But for Mattie this was very painful. Mattie's right leg had a prosthetic, and he was cautious using it. However, even if he were to use his left leg to stomp on the pedal, he still had to balance on his right leg, and that too was cumbersome for him. In the midst of all this action, Mattie's big buddy came by to visit. You can see Brandon in the door jam, he couldn't come in because of Mattie's suspected infection. Brandon by this point was in remission from lymphoma but was rushed to the hospital for an appendicitis. So Brandon was in the room next door to Mattie recovering from a lot of pain. What this picture clearly illustrated was physical therapy with Mattie was NEVER boring and he was surrounded by people who really cared about him and his recovery.
Quote of the day (Actually a POEM): Annabel Lee by Edgar Allan Poe
It was many and many a year ago,
In a kingdom by the sea,
That a maiden there lived whom you may know
By the name of ANNABEL LEE;
And this maiden she lived with no other thought
Than to love and be loved by me.
I was a child and she was a child,
In this kingdom by the sea;
But we loved with a love that was more than love-
I and my Annabel Lee;
With a love that the winged seraphs of heaven
Coveted her and me.
And this was the reason that, long ago,
In this kingdom by the sea,
A wind blew out of a cloud, chilling
My beautiful Annabel Lee;
So that her highborn kinsman came
And bore her away from me,
To shut her up in a sepulchre
In this kingdom by the sea.
The angels, not half so happy in heaven,
Went envying her and me-
Yes!- that was the reason (as all men know,
In this kingdom by the sea)
That the wind came out of the cloud by night,
Chilling and killing my Annabel Lee.
But our love it was stronger by far than the love
Of those who were older than we-
Of many far wiser than we-
And neither the angels in heaven above,
Nor the demons down under the sea,
Can ever dissever my soul from the soul
Of the beautiful Annabel Lee.
For the moon never beams without bringing me dreams
Of the beautiful Annabel Lee;
And the stars never rise but I feel the bright eyes
Of the beautiful Annabel Lee;
And so, all the night-tide, I lie down by the side
Of my darling- my darling- my life and my bride,
In the sepulchre there by the sea,
In her tomb by the sounding sea.
My 11 year old friend, Katharina, emailed the poem, Annabel Lee, to me this morning. She is studying this poem in school and I imagine when she read this poem it made her think of my connection to Mattie. Annabel Lee is the last complete poem composed by American author Edgar Allan Poe. Like many of Poe's poems, it explores the theme of the death of a beautiful woman. The narrator, who fell in love with Annabel Lee when they were young, has a love for her so strong that even angels are jealous. He retains his love for her even after her death.
The portion of the poem that captured my attention was.... "That the wind came out of the cloud by night, Chilling and killing my Annabel Lee." Though I can't relate to a wind, my figurative wind was Mattie's cancer that blew into his life, consumed him, and took him away from me. Yet despite Mattie's death, we remain connected to each other. Maybe not in the same way Poe describes at the end, but our connection is more spiritual in a way, and as with Poe, the moon beams do have great significance to both of us. I was deeply touched by re-reading this poem, and impressed that an 11 year old would read this in school, and connect such a very loving and heart wrenching poem to me.
After the poem, I received another gift today. This one came in the mail from the founder of Bows for Hope, Lauren. As my faithful readers know, Lauren is 13 years old and an Osteosarcoma survivor. We met through Mattie's blog, because Lauren and Mattie were battling the same cancer at the same time. In Mattie's honor, Lauren developed her own non-profit, which creates beautiful duct tape bows. Her mission is to raise funds for Mattie Miracle and I welcome you to visit her website to hear her own inspiring story: www.bowsforhope.com
Lauren mailed me a check from her December bow sales! However, in addition to this wonderful gift, she made me 17 bows of hope! They are beautiful! What amused me though was also her creativity on the outside of her packing box. I took some pictures of this adorable box! I loved the marketing!
Here is a side view of the box!
This is what it is says on the bottom of the box!!!
This is another side of the box. It says.... "Let's Go BFH!" Which of course stands for Bows For Hope!
Lauren created these bows for me because she knows this coming Friday I will be meeting with the Girl Scouts and introducing them to Mattie and the Foundation through a formal presentation. When I learned about this opportunity through Heidi, I decided to reach out to Lauren. Since Lauren is a teen who uses her passion, creativity, and experiences to help others, I thought it would be meaningful for the Girl Scouts to see a live example of how teenagers can and do make a difference. So on Friday, I will also introduce these 12 girls to Lauren, her non-profit, and give each girl their own Bow for Hope! To me these bows are beautiful, and when you understand the story behind them, they are sheer miracles. Lauren is a courageous survivor, who knows first hand about the ravages of Osteosarcoma. Yet she lives with that knowledge daily and channels it to make a difference and help other children and their families. If this isn't the definition of a hero, I don't know what is.
Peter and I had a working lunch. One of the business school groups sent us 14 questions and a social values survey to complete on behalf of our Foundation. You should note however, that this group is using Mattie Miracle as a case example for a second business school class. So for this group, we are their center of focus for TWO classes. We will meet with this group on campus this coming week, but we wanted to give some thought to their strategic questions ahead of time!
After lunch, we walked Roosevelt Island together. It was a beautiful sunny day in the 50s, and while walking I heard a hammering sound. I knew immediately we had a Pilated Woodpecker in our presence. Peter saw it in the distance, and snapped a picture! Despite not feeling well, I needed to get outside and get fresh air. Roosevelt Island is always an oasis for us in the heart of the city!
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