Wednesday, October 6, 2010
Tonight's picture was taken in March of 2009. Linda (Mattie's childlife specialist) snapped this picture of Mattie in the childlife playroom. Based on Mattie's activity, I can tell it was chemistry day on the floor. The Georgetown Chemistry Club came to visit the kids every friday, and they would also have a neat experiment to do with the kids that captured their attention. Mattie loved the experiments and he got along famously with the president of the chemistry club. That particular day, they were making ice cream, using dry ice. As you can see in this picture, Mattie was neutropenic (or his white blood cell count was low, and therefore he was susceptible to infection) and had to wear a mask in public spaces. I must admit I was vigilant with Mattie on a lot of things, but mask wearing and gown wearing wasn't one of them. Having cancer was daunting enough, living in a bubble was just over the top for me. Instead, I would be cautious to what I exposed him to during the times he had low white blood counts, but I couldn't see holding him back with masks, gloves, and gowns. His life was limited enough physically! What I love about Linda's picture was it captured Mattie's curiosity, his love for doing hands on activities, and really his joy in learning (even when so sick and not feeling well!).
Quote of the day:
No light that was born in love can ever be extinguished. ~ Darcie Sims
I woke up this morning and to my dismay, my cell phone was not working. That may not seem like a major issue to some of my readers, but for me, this is a serious problem. From my days in the PICU, my cell phone has been my life line and my mobile support network. Though our cancer crisis is technically over, the aftermath is that I still live parts of my life in crisis, and I believe it will take a great deal of time to normalize (if that is even possible). With my phone not working, there are at least three people that I need to alert to this otherwise, my lack of response during the day will cause great panic in them. So I let Peter, Ann, and Karen know that my lack of emails and text messaging was a result of a blackberry issue, and did not signify that something was wrong with me.
At 10:30am, I was invited to Mattie's upper school campus, to attend their weekly chapel. Meredith, Tamra's daughter, was going to be giving a talk at chapel and I knew she integrated Mattie into her talk somehow. Meredith and her sister, Louise, got to know Mattie when he was battling cancer. They sat and played with him many times, so Peter and I could go out and take a break from our caregiving roles. I believe it was through these playful moments that Meredith and Louise learned a great deal about life, ironically from a seven year old. I wasn't really sure I absorbed that message at the time, but after Meredith's talk today, I can say this did sink in. I appreciated Meredith's talk SO much, that I asked her to send it to me electronically tonight. I want you to experience what I heard this morning. Frankly, I know Mattie profoundly changed my life, but hearing these words out of a 17 year old made me pause. Meredith captured in a most eloquent way the manner in which Mattie has changed her world view, and better yet, through Mattie she has discovered that life's true beauty is experienced in helping and being there for others. Though her words are powerful, her delivery was memorable. She was witty, charming, humorous, and serious all at the same time, and what I noticed was her style captured her audience's attention.
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Meredith's chapel talk
Good morning my name is Meredith Bentsen and I’m a senior. If it weren’t a Wednesday, I’d be telling you to sit down right about now. But it is in fact Wednesday, and you’re sitting down so that takes care of that.
So anyways, before I went on that tangent and did the cliché chapel introduction, a parable was read. This parable, formally known as the parable of the workers in the vineyard, is a pretty simple one to understand.
One guy works hard, the other doesn’t, but both get the same amount of payment. The harder working guy gets upset because he thinks he deserves more, and God says that the payment was good because every person is created equal and that if the hard working guy wants to be a good person, he’ll live this lesson.
Easy right? Well yeah, it’s easy to understand, but it isn’t always easy to follow. We are fierce competitors, which can be a very good trait to have. You always hear about those kid geniuses that skip like five grades, just because they can. But then when they’re doing graduate research instead of going to prom or making friends, they often feel unfulfilled and depressed, even though they may have developed an amazing cure.
Accomplishing things is great, but if you don’t step back every once and a while to appreciate everything and everyone that you have, life is worthless.
Before late 2008, I had not learned to balance competitiveness and being thankful. My competitive nature started over seventeen years ago. I competed with my mother’s doctors throughout the labor process. I was due in August, but I wanted out early. On July 3, 1993, I tried to kick myself out. I kicked my mother so hard that I broke one of her ribs. Ironically I was born two weeks late on August 16,1993. On my birthday, I really wanted out. I even broke my collarbone being born because I pushed myself forcefully through too quickly.
This competitiveness became a pattern in my adolescence. A couple of years after the “birthday brawl,” I broke a bone yet again when my sister and I were racing to the kitchen for cut up hotdogs and broccoli with cheese on top, our gourmet lunch staple. My sister said she didn’t mean to shut my finger in the door but I’ve always thought differently.
At age twelve, I broke my leg in a dance off with my cousins. I spent New Years of 2006 in the emergency room of the only hospital in McCallen, Texas.
Fast-forward three years to my sophomore year. I was a fifteen-year-old battling trigonometry and scientific notation. I hung out with friends on the weekend and went to school during the week. I did clubs, and played sports, and life was pretty good, but I always felt like something was missing in my life.
In the winter of my sophomore year, I met Mattie Brown, known fondly to my sister and I as Matticus Brownus. As many of you know, Mattie Brown was a kindergartener at school who battled osteosarcoma, a severe form of bone cancer. My sister and I babysat and became friends with Mattie for a number of months during 2008 and 2009.
Usually I’m uncomfortable with sickness and people in pain, but this was different. Even in the most excruciating pain and treatment, Mattie remained a loveable and laughable child.
Mattie Brown died on September 8, 2009. He was seven.
Mattie was a fighter; he was a light in this dark world. I didn’t realize, however, until his ceremony, how much he taught me. Slowly but surely, Mattie unraveled my tightly closed heart, and revealed a new attitude towards life.
Those nights of playing in the tipi tent, and days of looking for Easter eggs, sharing jokes, and outsmarting me every time gave me a appreciation for one of God’s greatest gifts: companionship.
Amiss every assignment and task I had to compete for those truly few months, Mattie gave me a light in the tunnel. Seeing a mere child in such pain with such demeanor and charisma changed me.
I believe that Mattie was a gift from God, sent to make me realize that there’s more to life than competing against someone or something, and that the special people around you won’t be there forever.
While Mattie and I shared a fierce competitiveness, he fought with the most dreadful and heart-breaking disease in the world, while I took down opponents on the squash court, his ability to fight while remaining a happy child was amazing.
One of my favorite songs is “Give Me Your Eyes” by Brandon Heath. Disclaimer: it’s a Christian rock song, but I like it anyways. The lines that most stuck out to me were in the chorus when he sings “Give me your eyes for just one second, give me your eyes so I can see everything that I keep missing give me your love for humanity.”
I think that God sent Mattie to the world to open my eyes and the eyes of others. He helped me see the true meaning of life: not to be focused solely on succeeding but on loving one another and loving God.
Every morning when I get out of my car, I take a minute to look at a very special charm on my keys. It is a simple one, just four letter beads. But what the letters mean is most important to me. The letters MMCF stand for the Mattie Miracle Cancer Foundation. A foundation founded by Mattie’s parents, Dr. Victoria Sardi and Mr. Peter Brown, to try to educate people about childhood cancer and to lobby congress for more funding for childhood cancer. Every morning when I look down at those letters, I remember to appreciate everything and everyone that I have. I remember what Mattie taught me, and that he is still with me everywhere I go and with everything I do.
Seniors, class of 2011, my peers, and my friends: Next year we will be freshmen yet again. But thankfully, that’s nine months away. Don’t take these months for granted. Try something new at school, make friends with someone you’ve never talked to before, appreciate everything that we have here before we are handed diplomas and sent on our way. Nine months seems like a long time, but it's going to go by before we know it. Embrace this community before you have to leave it.
And to everyone, if we all open our eyes even for “just one second” as Brandon Heath sings, we can see what God wants us to see. A world where being the best is loving the most, and winning is helping someone else see the light.
Amen
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After Meredith's chapel talk, I stayed after for a while and had the wonderful opportunity to chat with Joan Holden (Mattie's head of school), Larry Jenney (Mattie's assistant teacher, who now works at the upper school and is an assistant head football coach and is the assistant director of the summer camp program at the school) and Dave Holm (a major Mattie supporter and head football coach at the St. Stephen's and St. Agnes School). Dave and I landed up in tears together, as we reflected on the fact that we will never be able to see Mattie attend high school. Mattie will never be like one of the young men I saw in attendance at chapel today. That is a harsh and painful reality, and that was enough to set me off, and Dave as well. I found it extremely touching to hear how Dave and Larry were touched by Mattie's life and I so appreciated their time and sensitivity today. You should note that Dave wears Mattie's wristband (that was created for the 2009 Walk) everyday, and it has changed colors from orange to yellow from such good use. I also had the opportunity to chat with Mary on campus as well. Mary was Mattie's technology teacher and many of my faithful readers may recall that Mary came to the hospital on a regular basis to have computer time with Mattie. These individuals made coming back onto campus today meaningful, and I am touched by their commitment to keep Mattie's memory alive. You should also know that when I asked Joan if we could use the campus again this year for a Cancer Walk, her response was that it was the school's honor to participate in such an important event! This continued support means a great deal to Peter and I.
I had lunch today with my friend Mary Ann. I met Mary Ann in graduate school and have remained friends throughout the years. Mary Ann lost her mother to cancer this July. Though clearly our losses are different, we do have similar feelings on many issues. In a way cancer has forced us to see clearer and to value people for who they are, despite the differences we may share. I can see that grief has left us tired all the time, emotionally drained, sad and depressed, challenged when engaging with the outside world, and constantly seeking the safety and security of certain people in our lives. We had a fascinating conversation about religion and God and we both came to the conclusion that God loves us whether we attend church each Sunday or not, and he loves us regardless of the faith we choose. I think it is people who like to interpret religion who place guilt upon their followers, but I personally feel that God loves all of us, and he doesn't care whether we worship in a church, temple, or mosque. But I believe it is our actions, behaviors, and how we treat one another that matters to God. Through cancer, Mary Ann and I have learned about our families, and the simple fact that such a disease doesn't always bond people closer together. In fact, it can tear families apart, and without understanding, work, and sensitivities, these connections can be permanently damaged. However, we both have discovered our need for gardening and connecting with flowers and natural beauty. I do not think this is happenstance, I think this is a direct response to experiencing death. Seeing, hearing, and smelling death in someone you love are traumatic, and in order to try to re-engage with the living again, seeing natural beauty is almost imperative. After lunch, Mary Ann showed me her mom's house in Alexandria, and we chatted about the beautiful flowers that she and her mom planted at the house over the years. It is hard to say good-bye to a family home, and the feeling of leaving the emotional connection of your loved one behind is heart wrenching.
After lunch, I met up with Peter to solve my phone crisis. He took me to the AT&T store to replace my blackberry. The poor salesperson did not know what hit him today. He was trying to get me to move into the 21st century with an i-phone or a touch screen. Forget it! I told him I wanted the equivalent to my current phone. So by the time he realized I wasn't budging, he started the transaction, and transferring my data. He then asked me if I was aware of the fact that I produce over 1000 text messages in one year. Since I have an unlimited plan, I wasn't sure where this was going. He seemed curious to know who I was talking to you, and I then retorted back that...... I couldn't be the only person who walked into the store who generated a lot of text messages. Any case, he transferred things onto the phone and I when I tried to use it and I couldn't get it to work. So he assumed I was some sort of clueless wonder and took the phone and tried it himself. He then said to me that the phone responded slowly because I had TOO many text messages stored on the system. Well that did not sit right with me, and I said to him I am not technologically savvy, but shouldn't the new phone respond quicker than my old phone? My old phone had NO problem with storing my messages. His manager came over and heard this dialogue, and before I knew it, the phone he was selling me went into the trash bucket and a new phone came out. My joke is I went through three cell phones in just one day. Needless to say, he got the point, I wasn't leaving that store without a functioning phone.
At 6pm, Peter and I attended the Mattie Miracle Cancer Foundation board meeting. This is an eight member board and despite busy schedules everyone either attended the meeting live or on conference call. I appreciate the commitment of these professionals, and I am learning to manage being on the phone with groups. This is not a format I prefer for communication, I much prefer live contact where I can see someone's face and determine how they are feeling and connecting with others. Peter did a great job keeping us organized and setting our agenda. I tried to highlight for the board some of the psychosocial interests I have for the Foundation and gave them an overview of my visit to Georgetown University Hospital yesterday. They liked this direction and helped me flesh out some of the other ideas I have been brainstorming. I will be sharing them with you soon as I begin to work on them. Needless to say, it was a productive meeting and I appreciate the board's input and suggestions. I also appreciate that several of the members are also looking out for my emotional well being, so that I do not take on more than seems physically and psychologically possible.
