Friday, September 9, 2011

Friday, September 9, 2011

Tonight's picture was taken in May of 2006 at Sesame Place in Langhorne, PA. It was Memorial Day weekend, and we were lucky the park wasn't crowded. The weather was also perfect and it allowed Mattie to do all the water activities at the park. Mattie had a great time and went on all sorts of water slides! I love the matching hats in this picture! Though Mattie wasn't a baseball fan, he was very pro "Boston" and rooting for his dad's team!

Instead of a grief quote tonight, I am sharing a beautiful poem that was sent to me today by my friend and colleague, Nancy. Nancy wrote this poem and was inspired by my connection to butterflies and her passion to honor Mattie.

Two Years Have Passed… Dedicated in memory of Mattie Brown by Nancy Moskowitz

 

What began as a blob

Wrapped tightly in a blanket
Waiting for the proper time to emerge
Stretching and poking towards the sunlight
One wing, a body, another wing
Fascinating shapes and patterns etched delicately
And the colors, each different
Some muted, others bold
Like the sky before a rain.
 
This perfect insect that flutters
Through the air, occasionally landing on a treasured blossom
To sniff the fragrance of said repose.
This is your emblem, sweet Mattie
One of many symbols that those who love you
Treasure and hold dear.

We think of you passionately

Some minute by minute, others at a pace
Fashioned by their memories.
You lived a short life, much like the sacred butterfly
And like this wanderer, carved your mark
Completely within our heart.

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

Waking up early today to preside over a licensure board meeting was beyond challenging. I felt absolutely wiped out from yesterday and really the week in general. However, I dragged myself out of bed and hosted the meeting. Unlike our typical marathon meetings, today's meeting was only two hours long. So it was doable.

My friend Tina (who I made squash relish with), wanted to give me gifts today to bring to California. She wants my parents to sample our relish and her fig jam, which I know they will be delighted to experience. So we decided to meet for lunch and chat. Tina hasn't known me very long, and we hadn't had the chance to become friends while Mattie was alive. It was only once Mattie died and I began practically living at Ann's house, did I get to know Tina (who is Ann's neighbor). In fact, 2009-2010, seems like a completely lost year. I know it is a part of me, but I was so traumatized and numb, that my memory of that year is fuzzy. If it weren't for the blog, I really wouldn't have a strong sense or recollection for the day to day activities I did. It was during those days that Ann kept me moving, focused, and doing. She gave me a direction, when I was directionless. However, it is hard to become self-reliant and establish one's own direction in life now. I have had to do this since no one else can do it for me, but I have to admit it is hard and I have to admit at times it is scary. Because it means venturing out on my own and finding who I am again and what I am comfortable doing.

I tell Tina all the time that our friendship works, because it is just that. We are friends because we get along and have commonalities. We are not tied together because of our children. Children bond parents together, and without these ties friendships can disintegrate. In a way, I have learned one of life's most painful and bitter realities..... you learn who your friends are and those who want to remain in your life regardless of the circumstances. Naturally all friendships evolve, but the death of a child in a way is a forced evolutionary process. It forces changes in me and changes in those around me.

Later in the day I came home, did some Foundation work, and then literally had to lie down. Patches, our cat, took to our bed as well, which is VERY unusual. I think the rain and the entire week knocked us out. This evening I can say that I am packed for California and the next time you hear from me I will be in Los Angeles.

I wanted to end tonight's blog with two wonderful messages I received. The first message is from my good friend Christine. Christine's son, Campbell, and Mattie were VERY close kindergarten buddies. They understood and appreciated each other. They were kids who could PLAY for hours with each other. Not in front of a TV, a computer, video games and so forth. They played, they talked, they ran around together, and they created. They loved Legos, but they also had a wonderful way of taking everyday objects and transforming them into all sorts of things in their world of imaginative play. It was beautiful to see and experience their friendship evolve and while observing them, Christine and I became friends. We supported each other through kindergarten and we really looked forward to our continued school days together. With Mattie's cancer and then death, we have lost our everyday playground contact. Despite that, we are still very connected. Mattie created a bond between us and Mattie is also a friend who remains in the forefront of Campbell's mind. You can see below that today Campbell went to Mattie's tree and hung sand dollar ornaments on the tree. He wanted his buddy to know he remembered him.

I received this message from Christine last night. Christine wrote, "Well, the rain has interfered with our plan this evening to visit Mattie's tree. I did want you to know that we are thinking of you, Peter and Mattie. Campbell has two sand dollars all ready to hang in honor and remembrance of his friend. I am sorry it did not work out for today. I really debated getting on my step ladder in the rain, but when the lightening came, I thought it would be best to wait a day or so.  I have a strange incident to share with you...I read on your blog that you recently had a flat tire. A few days ago, we saw that the rear driver's side tire on Austin's car was almost completely flat. A day or so earlier, I placed your Mattie Miracle ribbon magnet on his car on that same side. I wouldn't have given it a second thought if I hadn't just read about your tire experience. Interesting."

The second message I would like to share with you came from one of the undergraduate students at Georgetown University. Charlotte was in attendance on Thursday when we lectured a business school class on the Foundation. Charlotte reached out to us yesterday and shared her meaningful reflections with us about Mattie's story. Her words captured my heart because what they illustrate to me is that our talk impacted her and made a difference. It has caused her to think differently and to also think creatively about ways to help children with cancer. Since yesterday, Charlotte and I have been communicating back and forth and today, I connected her with Linda, Mattie's childlife specialist. I am thrilled that Charlotte wrote to me and shared her perspective with me. As I told her she gave me a great gift this week. I will remember Thursday for a long time to come, but without feedback sometimes it is hard to know whether you really made a difference. Read Charlotte's message and you can judge this for yourself.

Charlotte wrote, "I first of all want to thank you both for coming in to talk to us today about your son Mattie, especially on his anniversary. Today must be extremely difficult for you and I cannot even imagine the pain Mattie and your family have gone through since Mattie was diagnosed with Osteosarcoma. No one should ever have to go through such hardship. It is unbelievable to learn about the lack of funding and attention to psychosocial impacts of childhood cancer and I had no idea until your presentation today. In fact, during lunch I shared Mattie's story and your presentation slides with my sister who is a Nursing student here at Georgetown, and she did not realize the lack of treatment and funding either. Though on an extremely micro-scale, hopefully she can pass this along to her classmates to spread the word.  I wanted to ask you a question in class, but I was extremely touched by your presentation and knew that if I spoke up I probably would have broken out into tears. I thought an email might be safer. I remember you saying how Mattie loved animals, and I was thinking of how great it would have been if Mattie had received a pet visit while he was in the hospital. This idea came to me because my family friend does "pet therapy" once a week at a hospital in Florida and brings her dog in to the hospital to let the patients stroke the dog and be given love. Dogs are so lively and spirited, and I thought it might be nice for children in the cancer ward, like the one your son was in, to be visited by a creature full of life and love. I pet-sit here in Georgetown and perhaps the owner would allow me to bring her dog in to visit the patients. However, I know that patients may have allergies, etc. and Georgetown Hospital might not allow animals to enter. Therefore, I was wondering if you knew by chance their policy in the cancer unit Mattie was in regarding pets, and if you think the children would like to have a pet visit? I am just trying to think of something to give joy to and excite the children and families when I visit, and distract them from their distress and pain. I would appreciate any thoughts you have. It was very moving to listen to the passion you have for funding and providing awareness for childhood cancer. and I feel honored that you came in and talked to us today. Saying that I am so sorry for your loss does not do enough justice. When you said that Mattie was diagnosed on July 23 2008, all I could think about was the fact that I was celebrating my 19th birthday while your poor son was experiencing the worst news of his life. Hearing stories like Mattie's really gives perspective, and it is something we need in this day and age where the business and complications of life distract us from realizing how blessed the rest of us are to be living in healthy bodies and that we should be helping those who need our love and support. Thank you again for your time today, and I hope that you received much warmth today from friends and family. I should think that Mattie is looking down and very proud of the legacy you have given to his life and carried out for the sick children of the world."