Tonight's picture was taken in February of 2004. You can see the beauty and excitement of Mattie. But what you can also see was Mattie in red. Naturally when he was a toddler, I dressed him in all colors. But the color he gravitated to was red. As he got older, he would tell me that red was his favorite color, and then continue on by saying..... that's your favorite color too!
Quote of the day: To the romantic soul, the rituals of Valentine's Day echo every day of the year. ~ Richelle E. Goodrich
Pictured from left to right are:
Vicki, Pat Martin (Anthem), Lori Wiener (NIH), Andrea Patenaude (Dana Farber), Melinda Marchiano (Lymphoma survivor), Lee Marchiano (Melinda's mom) and Peter
Melinda and Lee were asked to tell their stories in relation to the psychosocial standards of care. Meaning if the standards had existed when Melinda was diagnosed.... would it have made a difference? Of course the answer is YES! Melinda addressed our survivorship standard and Lee addressed school re-entry and psychosocial support for parents.
Though I have heard Melinda speak before, several things she discussed resonated deeply with me. In our everyday lives, we walk around with a shell, to protect us from our losses/issues and the world. However, to do a presentation like this means opening one's self up to be vulnerable. Exposing truths, real feelings, and also dredging up the past. Don't get me wrong, the past is always with us, but having to find the courage to verbalize it and it to make sense to others takes great energy. Melinda also mentioned that she can talk to people in her life and yet no one truly understands what she lived through, which compounds the isolation. So much of what she reports as a childhood cancer survivor is true for parents as well. Especially parents who lost a child. Which brings me to another misnomer..... when people think of childhood cancer survivors they think of only the children. But in all reality it is everyone in the entire family system who is a survivor.
Needless to say, we had 130 attendees and people sat through the 90 minute presentation. You could have heard a pin drop!
1 comment:
Vicki, that is a very impressive panel for your presentation especially having a survivor and her Mom talk. I too, think it must takes great courage to open yourself up partularily to a group of mostly strangers. Even if their ultimate goal is so do their part to help to implement the Psychosocial standards. I greatly admire her & her Mom. I have great Faith in Mattie Miracle, you & Peter. At the end of the day, it is still you, other bereaved parents and this young woman & her Mom who live daily with the results of Childhood Cancer. The Drs.making decisions , for children & families with a child in treatment, will eventually make those decisions about their medical protocol and their psychosocial care because of Mattie Miracle. I have lots of Hope!
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