Tonight's picture was taken in June of 2009 at Mattie's "bug and reptile" birthday party at our friend Christine's house. A surprise to all of us was Christine's husband, James, got into the theme and playfulness of the day. He bought a roach costume and carried Mattie's roach cake (literally shaped like a roach), out to Mattie. I am not sure what Mattie was more thrilled about.... seeing James as a roach or the actual cake. Both were pretty impressive and memorable! Actually for some reason seeing this picture tonight was hard. Hard because I remember the life, humor, and energy Mattie had that day, and it is hard to believe that he really is no longer part of our lives.
Poem of the day: The Battle Goes On by Charlie Brown
So many things I want to say
It was such an overwhelming day,
I seemed to see you everywhere,
It was almost more than I could bear.
I saw your friends at the ceremony,
And they were all very solicitous of me.
But I know what still lies ahead,
Even though "I'm fine" is what was said.
They continue to battle every day,
Against the cancer beast, dark and gray.
But your battle ended a year ago
And it remains quite a blow,
To be here without my boy,
And to try to cope with others' joy.
So though I don't have you any more,
I am committed to the core,
To fight to help these others survive,
That's what keeps my hope alive.
I received Charlie's e-mail this morning and I was surprised. Why was I surprised? I was surprised because I thought I kept last night's posting rather neutral. However, I guess after reading my writings for two years, you kind of get to know a person's style. Charlie clearly knows mine. She is astute, because she has observed when I do not report on something it usually means that it bothered me and either I am better off keeping my thoughts to myself, or simply I am not sure how to process my thoughts and therefore I remain silent. Charlie somehow knew from my lack of reporting on last night's Hyundai Hope on Wheels reception that something was up.
The reception last night was wonderful. The Hyundai dealers and leaders couldn't have been nicer, more gracious, or more energetic and committed to the fight against pediatric cancer. My issue with last night had to do with a couple who sat next to me at dinner. This couple also lost their son to Osteosarcoma. I asked them during the dinner whether hearing cancer success stories and talking about finding a cure and so forth impacted them like it does me at times. I guess I asked the question, in hopes that they shared similar feelings and thoughts as me. But on the contrary we couldn't have been more diametrically opposed. I will spare you the details, but the overall gist of the conversation was that the way Peter and I are looking at Mattie's cancer battle and death are ALL wrong. We shouldn't be questionning it, but using it as a positive force in our lives. The conversation continued, and as it did, I found myself unable to speak at the table. I was quiet because I respected their opinion, and the ways they have channeled their grief, yet on the other hand I was angered that they couldn't give me back the same courtesy. Peter tried debating our view point with them, but it was going no where, and I did not feel the need to have to justify my feelings. This whole interchange affected how the rest of the night went for me.
This morning, I attended the third Hyundai event. This event was held at the National Press Club in DC, and there was a wonderful formal program that ran for about 45 minutes. The media was there to capture the fact that this is the beginning of National Childhood Cancer Awareness month, and that Hyundai has given out 68 hope grants around the country to scientists to pursue innovative pediatric cancer research. Hyundai hopes to raise 23 million dollars by the end of September! At the event, we saw two videos. One was the commercial I posted last night on the blog, and the other was a video about the Hope on Wheels program. The 45 minute program went very quickly, and I think that was because there was incredible energy radiating from the Hyundai leaders themselves. Brianna, the National Youth Ambassador for Hope on Wheels spoke today as well. She is the picture of life, health, vitality, and commitment. She told the audience that some times people ask her what she wants to be when she grows up. Her response is a pediatric oncologist. However, then she paused and said she most likely wouldn't be able to achieve this goal, because with the amount of money Hyundai is raising for pediatric cancer, there will be no need for pediatric oncologists in the future, because cancer will be eradicated. It was a very sweet and empowering statement. We can only hope that Brianna's dream comes true, but at the moment I would settle for better and more effective treatments for pediatric cancer. When you think that the last FDA approved cancer drug for children came out over 10 years ago, and that children are being treated with drugs that are over 25 years old, it makes you pause. If you are a parent with a child who has cancer, you more than pause, you become livid, disgusted, and conclude that this is unacceptable.
Today's ceremony made me cry. In fact over the course of the last two days I have felt many emotions. I am saddened that Mattie did not have the opportunity to live, that he wasn't able to tell a positive story, and though I do not like this feeling within myself, I wonder why one child gets to survive, while another is chosen to die. None the less, I have had the wonderful opportunity to meet some amazing Hyundai leaders, such as the CEO, John Krafcik. He and many of his regional and national leaders are truly passionate about helping children and their families with cancer, and frankly it is sincere and not just a company going through the motions to look good in the eyes of the public. I learned a lot about Hyundai, and I hope as their commercial airs this week, it too gets you to pause about pediatric cancer and reflect on Mattie's story and the story of so many child affected by cancer.
I would like to share a picture from today's event. In the front row from left to right is Julie (a Lombardi Clinic parent), Vicki, Dr. Shad, Brianna, and Dr. Nelson (the chair of pediatrics at Georgetown Hospital) in the back row are some of the wonderful Hyundai dealers who support the Hope on Wheels program!
In the afternoon, I headed to Ann's house to water her garden. It was literally 100 degrees in DC today again, and without water the plants just won't make it. While I was outside, my friend Mary (Ann's neighbor) came by to visit with her two daughters. The girls handed me a big box of chocolate and told me they got this for me at Hershey Park. They know that Mattie died and they thought the chocolate would cheer me up. It was very adorable and very touching, and then they both gave me hugs. This is a scene that has played in my head all day. Mary's daughters did not have the opportunity to get to know the "well" Mattie, yet in their mind Mattie is their friend, and they continue to think about him and in essence us.
I brought Mary (Ann's mom) dinner tonight. She requested certain foods, and I know that when you are unable to choose your own foods for yourself it can take away the pleasure of eating. So I got Mary all the things she requested and sat with her and helped her eat. Before I left though, Mary said two things to me. She said that we have a lot in common. Or which I told her, I KNOW! Then she said if I should get sad or feel alone, that she is always there, and will understand.
What I have concluded about today is that it was a day of unexpected gifts. First I got a box of chocolate, then Mary verbally gave me a gift, and when I got home, I received two gifts in the mail. The first gift was from my friend and colleague, Nancy. Nancy creatively put together a survival kit for me, for the next couple of days. She literally wrote me a card in the kit for each day until I get to September 8 (there were cards for August 30 - September 8). The kit is composed of a beautiful mesh container. I told Nancy the container reminds me of something Mattie would have loved to use to collect bugs and butterflies. Inside the container were all sorts of treats from a book to lotions. It was a very thoughtful gift and definitely made me understand that others get how hard this upcoming week is for us!
The second gift I received in the mail was a book. The title of the book is "Selecting and Surviving a Doctoral Program in Counseling." As I looked at the book, I noticed I was a co-author. My colleagues, who I have worked with for years, took the ideas we presented at conferences over the years and turned it into a book. We had talked about this before Mattie got sick, but once Mattie developed cancer, I was focused solely on him. It was remarkable to see the work I had done and participated in for years, transformed into a publication. When I opened up the book, the book was dedicated to Mattie and the Mattie Miracle Cancer Foundation. I was deeply touched! Helping graduate students was my mission for the longest time, and I am hopeful that such a publication will allow students to see that the stresses of writing a dissertation are normal and the process is daunting. It shouldn't be taboo to talk about it, and knowing that you aren't alone in your feelings is powerful in and of itself.
When Peter got home, he too got a gift in a way. His parents sent him a geology paper he wrote in his senior year of high school. At first Peter did not even remember writing the paper, but as he paged through this 20+ page paper, it came back to him. Peter wrote an author's note to start off the paper, and it was fascinating to hear about Peter's interests and thoughts back then. I could clearly see that even though Peter was writing about glaciers, he inserted humor and even far side comic strips into the paper. That whole notion had me laughing, and clearly his teacher also appreciated his witty humor.
I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "I really don't know how you managed to attend both events yesterday. I was overwhelmed just reading about the grant ceremony and I found myself in tears at the computer. There is so much "Junk" in the news and yet there is so little dedicated to events and needs like this. No where does one see information about Childhood Cancer awareness month or the Hyundai Hope on Wheels Tour and I find that a sad commentary on our news media these days. The analogy of Atlas is a good one, the weight of the world is on one's shoulders and losing the battle only switches the fear you carry for grief, a different but just as heavy burden. I am thankful that there are companies willing to put the weight and funds of their organizations behind causes such as this; we would be even further behind in our research and efforts if they did not do so. As you go to the next event today, I send you my strength to help you through it, although you are probably one of the strongest people I know. I hold you gently in my thoughts."
The second message is from my friend and colleague, Nancy. Nancy wrote, "Congratulations to Dr. Shad and her team for receiving this much needed grant. Thanks, too, for telling all of your readers about this being Children's Cancer Awareness Month. It is something that I shall pass on to my NY friends and colleagues. What an interesting piece about Hyundai! I am so glad that more big businesses and foundations are appropriating money for health issues. It is something I wish our governmental Health organizations thought deserved more research, but, we'll take help from any source. The picture and story about Mattie and Maya was precious. They were kindred spirits and created a wonderful planet, I'm sure. I hope that one day I might be able to see the videos. It is unfortunate that Mattie couldn't be here , in person, to join you at the celebrations regarding the hospital's grant. I know that he was with you in spirit. My greatest concern was looking at your eyes. The lack of sleep is coming through in these pictures. I hope that you are getting some sleep, even if it is during the afternoon. Power naps work too. With love always and in all ways."
No comments:
Post a Comment