Tonight's picture was taken in August of 2009. Mattie just received an incredible Lego set from his buddy, Kazu. As you can see Mattie was all smiles with excitement. Mattie was having great difficulty breathing by this point, and was on oxygen pretty consistently while at home. Unfortunately his time at home was short lived, because as the cancer was taking over his body, the pain was too intense to be at home.
Poem of the day: Grief by Claire Abbott
Grief
One word.
Used to describe so many emotions.
Hollowness, pain, anger, guilt,
Hurting, sadness, lonely,
Do I need to say more.
One word, Grief.
Don't say you have been there,
You may have lost someone, something,
but your grief is not the same as mine.
Grief, does not explain how I feel
I had the opportunity to attend a DC City Council Budget Oversight Hearing this morning. As the chair of the DC Board of Professional Counseling, I was asked to testify regarding 2011's budget and specifically to recommend to the city council the need to create an interdisciplinary team of licensure board chairs to oversee our own budget. Clearly, because of Mattie's illness and death, I have been out of loop with everything. However, I could see my physical support and presence was needed at this hearing today, so there I sat for three hours, until the city council was ready to hear from the panel I presented with. Mind you, before it was my turn, I must have heard the testimony of over 20 individuals, and at least five other organizational panels.
While listening to people talking for several hours one issue in particular caught my attention. Several individuals came to testify about the HPV (Human Papillomavirus) vaccine, which in 2007, became a mandatory vaccine for girls entering the sixth grade in the District of Columbia. There was NO one in the audience today in favor of this vaccine. Gardasil, is the name of the HPV vaccine, created by Merck. Right from the Gardasil webpage it says, "GARDASIL is the only HPV vaccine that helps protect against 4 types of HPV. In girls and young women ages 9 to 26, GARDASIL helps protect against 2 types of HPV that cause about 75% of cervical cancer cases, and 2 more types that cause 90% of genital warts cases. In boys and young men ages 9 to 26, GARDASIL helps protect against 90% of genital warts cases."
There were medical professionals and parents who testified about Gardasil. One woman's daughter died after the administration of the vaccine, a girl who was otherwise healthy, and had no pre-existing conditions. This mom was down right angry and upset over the loss of her daughter. I couldn't help but feel for this mom, because though our situations are quite different, I get that loss all too well. She explained to the audience that she trusted the government to make sound and ethical decisions regarding their recommendation to make such a vaccine mandatory. However, she expressed her distain for this decision, and she said that it was made in haste, without adequate efficacy data. In fact, Gardasil has only been tested on a couple of hundred children. That really isn't many, and as one physician stated, this vaccine isn't right for every child. Individual differences must be taken into account before administering it, and she went on to say that there are more effective and proven ways to prevent cervical cancer than the vaccine. Needless to say the dialogue fascinated me, and what was even more interesting is the fact that $150 million was allocated for HPV vaccine educational sessions in each of the wards in District of Columbia, and for the most part many of these training never came to fruition. Participants were asking what did the government do with this money if it did not go toward education? The irony is many parents did not realize they could op out of this mandatory vaccine, if they did not want their child to receive it. The sad part is this language is stated very clearly in the Bill that was passed into law. But some how parents and physicians in the District were unaware of the option to op out. All I could think about while listening to this is parents must be responsible for making the right decisions for their child. No physician or governmental agency can do this for you. Taking on the role of a parent is perhaps the toughest life challenge, and once in this role, you must be forever viligant.
With that said, I felt absolutely awful for this mother who lost her daughter. She trusted the city government, and better yet she trusted her doctor. Most of us are conditioned to getting vaccines for our children, so it is very understandable why this mom allowed her daughter to get the HPV vaccine. It appeared to be required by law, and her daughter's physician was recommending it. I can only imagine the guilt this mother lives with each day, and I admired her courage to stand up today and speak, in order to prevent someone else from experiencing her same nightmare.
It came to our attention today that there are many of our readers who want to support the Foundation, however, because they live out of State, will be unable to attend the Walk. Therefore, tonight Peter created a donate button on the cancer walk webpage, so our supporters will be able to make contributions. I appreciate those of you who suggested this to me, and most of all we appreciate the continued support you are giving us. For more information about the Walk and to make a tax deductible contribution to the Foundation, please visit:
https://www.mattiemiracle.com/Cancer_Walk.html
This evening Peter and I had a delightful conference call with Liz. Liz was the chair of the Mattie Miracle Walk last year. Her son and Mattie were in kindergarten together, and we are so fortunate to have Liz on our core planning committee for this year's Walk. To know Liz is to love her, she is dynamic, creative, and very passionate about what she does. She is helping us create a professional logo for the Foundation and has connected us with a very thoughtful graphic designer. Another woman who seems to be captivated by Mattie's story, and truly wants to help us make the Foundation a success. At least from a branding perspective. As I told Liz earlier today, in the initial phases of getting the Foundation off the ground, it is imperative to me that we work with others who understand our convictions, and who also share the same passion to help children and their families living with cancer. I find when someone's heart and mind are behind this cause, then only great products can result. A logo is a very important mark for the Foundation, and it is important to Peter and I that it captures the essence of Mattie. This is Mattie's legacy, and I take such a symbol very seriously, and thankfully we found a graphic artist who shares our vision.
I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "Today's practice was totally different from any I have done before. Today, all in the room were women and we did "moon salutations" rather than sun salutations. The sun represents the male energy in us and the moon, the female. We were centered on our breath and our emotions; acknowledging but not judging and accepting where we are now. It seemed very different and although there was much I could not do; I felt as though I would eventually get to the place where I could do it if I was willing to accept my own limitations and grow at my own pace. I left practice feeling very centered, calm and filled with energy. I send that on to you especially, as it is from my female side to yours; to help you accept what you have to and to see the small spaces in which you can begin to grow. I hold you gently in my thoughts."
The second message is from a fellow RCC mom and friend. Carolyn's daughter and Mattie were in the same preschool class, and Carolyn is our raffle committee leader for this year's Walk. She and her committee are doing a great job and working very hard at finding wonderful and enticing raffle items. Carolyn wrote, "I just had to write this morning to thank you again for your blog. I have to admit, this morning wasn’t going so well - had a rough morning with the kids, e-mails from staff bickering about petty stuff, feeling a bit overwhelmed by work and life in general, basically I was in quite a “funk.” Even when getting coffee this morning. a colleague asked “how are you today” and my response was “it’s one of those days – is it over yet” (which is very rarely my attitude). Then I sat down and opened up the blog and saw Mattie’s sweet, angelic face. This photo is one of the most beautiful and touching photos I have ever seen and if this doesn’t put into perspective what is important in life, I don’t know what could. I distinctly remember the first time you posted this photo on the blog – and remember the tears streaming down my face uncontrollably. So, I shut my door, had myself a little cry, and am now ready to face the day and whatever challenges it holds."
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