Thursday, December 15, 2011Tonight's picture was taken in December of 2008. Mattie was sitting on his hospital bed in our living room and around his neck was the Christmas wreath Debbie, his art teacher, and classmates made Mattie for the holidays. On several of the paper leaves were messages to Mattie. Mattie loved this wreath and even today, this wreath remains hanging on the inside of our front door.
Quote of the day: The mystery of life is not a problem to be solved but a reality to be experienced. ~ Art Van Der Leeuw
For parents who lost a child to cancer, we learn quickly that there really is no mystery to life. Because there is NOTHING to be solved! In fact, we know all too well that life is beyond our control and that in all reality one must live in the moment, in the present tense. This is NOT an easy place to live in, especially when one has his/her health and the basic needs of life. Human instinct is to live for the future, to plan, and to try to analyze or predict one's journey and the journey of one's family. The mystery or meaning of life looks very different however in the aftermath of cancer.
I am a loyal 98.7FM listener and during this time of year, WMZQ always has their two day long St. Jude Radiothon. I must admit that if Mattie's cancer hadn't impacted my life, I am NOT sure I could handle listening to two days worth of this broadcast. The radio station commits to raise around $300,000 for St. Jude each year, and in the process throughout the two days you hear heart wrenching stories from parents and families impacted by childhood cancer. The focus naturally is on families being treated at St. Jude. One thing that captures my attention always is the fact that St. Jude TREATS EVERYONE in the family, NOT just the child! Clearly St. Jude is a special place, since families come from all over the world to receive cutting edge treatment and pay NOTHING for the services not covered by insurance and NO child is ever denied treatment because of the family’s inability to pay.
I can assure you that St. Jude is definitely a very unique experience. Because for the majority of us, cancer is VERY, VERY costly. The bills are endless! The cost of Mattie's overall care for 15 months of treatment was several million dollars. Which is why 50 percent of childhood cancer families go bankrupt (because insurance doesn't cover everything for many families), which is an additional trauma and stress to contend with on top of battling cancer.
But keep in mind that you can't just decide to get treated at St. Jude. You need a physician referral and have to generally have a disease currently under study and are eligible for a current research protocol on clinical research trials. I naturally fully support the work of St. Jude's, but I can't help but want to scream when I hear that money is being raised for cutting edge childhood cancer research. I know research must be done to learn more about the different forms of childhood cancer, but I am also a realist and understand that in several decades that have past little to NO progress has been made on new and effective treatments for children. Of course if you lose a child to this disease the notion of a cure seems beyond comprehension and also not tangible.
The main thing that I did capture from the radiothon today is I could relate to the parents who spoke. One father said there are NO words to describe how if feels when you learn your child has cancer and even worse when you hear the words that there are NO other treatments available. In the midst of listening to the radio, I heard a song that captured my attention. Its title is "One of those lives" by Brad Paisley. I have never heard it before but the song is in honor of the brave children and their families fighting cancer each day at St. Jude. I attached a link to the song so you could hear it and what I like about this particular youtube video, is you can actually read the lyrics of the song. I think the song speaks for itself, because once you hear a child has cancer, it puts the traffic, the unkind boss, and other life troubles into great perspective.
http://www.youtube.com/watch?v=lKTmUotx97c
This afternoon, I went to pick up Ann's children from school since she had to go out of town for the day. As I drove back to Mattie's school it was a surreal experience. It was hard to see many children from Mattie's grade running around and getting picked up. However, in the midst of these feelings, I saw my friend Ellen (Charlotte's mom), and we began text messaging each other. Somehow that helped tremendously, even though we never spoke about Mattie. As the afternoon wore on, I had to help Abbie (Ann's youngest daughter) get ready for gymnastics which meant that her hair needed to be put up and back. Not unlike Mattie, she did not want her hair brushed and we began running around the house after each other. None of this surprised me, since I had many of these moments with Mattie. Mattie taught me that in these kind of moments, you have to make light of the situation. So literally since Abbie was doing headstands to avoid getting her hair done, I began using the brush on her legs and tummy. I told her if I couldn't brush her hair, I was going to brush the rest of her. I caught her off guard and she thought this was hysterical. Just like Mattie! By the time I wore her out from laughter, I was able to brush her hair. I learned the tricks of the trade by raising the master of complexity!
This evening, Peter and I went out to dinner with Deborah. Deborah is the palliative care professional who invited us to speak at the DC conference in November. I have enjoyed this new found connection and Deborah understands loss quite well both from a professional and personal standpoint. We met Deborah at a restaurant in Chevy Chase, MD, and this used to be another Mattie favorite. Mainly because it has a toy train that goes around the perimeter of the inside of the restaurant. For many of the past visits that we took Mattie, the train wasn't working, and he was disappointed. But it is fully operational now, and each time the train passed us this evening, I thought of Mattie.
I would like to end tonight's posting with a message from my friend and colleague. Nancy wrote, "Vicki, for some time now the blog has been full of details about your life before, during, and after Mattie's diagnosis. Last night's entry was about you and you were so clear in this writing. Your use of capitals to explain your emotions right now were full of power and I could feel your frustration and loss so completely. Over the years we have discussed Mattie and how you feel robbed. He was, is, and will always be your focus. That is what parents do, even when they lose a child. Some days I wonder just how you do take care of so many issues, responding to Mary, responding to my emails and others, and I think part of the reason is you are a survivor. Life isn't filled with promises of joy and complete happiness. We are challenged by the inconsistencies of life and the fragility that comes with loving and reaching out to others. The quote last night made me pause as what lies within so many is thinking of themselves. You, my friend, take care of others and now have to take care of yourself and Peter. It doesn't make any sense, this disease. It hurts and disrupts families. It causes pain, physically, emotionally, and mentally. It tests the bonds of friendship and love. It is often an unwanted partner that just won't go away. I hope the days at sea will offer some relaxation and health for you both."
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