Tonight's picture was taken in April of 2006. Mattie was four years old. I recognize Mattie's expression! What did it mean? It meant that he really did not want to sit still for a photo, but he did comply. Mattie got used to my photo requests. I did not just take photos on milestone moments, I snapped photos everyday. Every moment to me was worth capturing and THANK GOODNESS I was picture happy, otherwise, I would have nothing left.
Quote of the day: However many years she lived, Mary always felt that 'she should never forget that first morning when her garden began to grow.' ~ Frances Hodgson Burnett
As we approach May, it is Awareness Walk season for the Mattie Miracle Cancer Foundation. This year marks our 16th annual Walk. I honestly can't believe that the Foundation has been around longer than Mattie was alive and that I have been doing this work for 16 years. I remember shortly after Mattie died, we created the Foundation and I did not know if I was coming or going. I also did not really have a grasp for what the focus of the Foundation was going to be or even if we were going to be able to accomplish anything.
I will never forget that within the first few months of creating Mattie Miracle, another advocacy group basically told me in no uncertain terms, that we probably wouldn't make it! As this person said, childhood cancer non-profits typically last three years, and then they flounder. This person's statement has remained with me over all these years. Naturally when I heard what she was telling me, I felt dejected. It was daunting! Then if you know me well, you know I viewed this as a challenge. There was NO WAY Mattie Miracle was going to flounder, especially since the Foundation is in memory of Mattie.
What helped to create the Foundation's psychosocial mission? Two things. The first was most likely my education, training, and mental health background. I went through Mattie's cancer journey with a psychosocial lens and it was clear from our experience what was missing and inconsistent. The second is doing research and connecting with the top psychosocial minds in the childhood cancer space. After Mattie died, I started reading articles about medical traumatic stress. Mind you when Mattie was experiencing this, I called it PTSD, because that was what his symptoms clinically looked like. No one told me about medical traumatic stress, I had to learn about it on my own. I can't tell you how much it meant to learn that there was a term that described what Mattie and I went through. It normalized something that felt very abnormal.
I can recall one day after reading an article on medical traumatic stress, that I reached out to the author of the study. The article meant that much to me and I wanted this researcher to know this! Do I think most parents reach out to researchers? I don't know, maybe they do! This is where having a PhD evens out the playing field with the professionals I am interacting with, and in many ways we can talk the same language, which helps. It was from that one article that I read, that it opened up a whole new world for me and the Foundation. As this researcher (who happens to be the leading authority on medical traumatic stress in our country) responded to my email and from there our relationship bloomed. Do you know that this researcher and I still work with each other today?
It was from that connection, I got to meet and work with countless other amazing psychosocial professionals, who valued our vision to create Psychosocial Standards of Care. I will spare you the details, but what I think is absolutely transparent is that Mattie's journey is alive and well within me and his life guides the work I do with Mattie Miracle.
Our Annual Walk is the largest fundraiser we host each year and it helps us generate more than 80% of our operating budget to support our psychosocial programs and initiatives. I invite you to check out the links below, and I welcome your support of my Mattie Moon walk team. All donations are tax-deductible. We also run an on-line raffle and this year are featuring 10 wonderful items. All raffle proceeds go toward our overall Walk fundraising goal! I am deeply grateful to all our supporters, we couldn't make the Mattie Miracles possible without you.
Tickets are $5!
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