Tonight's picture was taken in June of 2006. This to me was quintessential Mattie. I have no idea why Mattie wanted to take a bath in the kitchen sink. It wasn't a typical occurrence. In fact, I think it was only that one time. Yet I clearly thought it was noteworthy and photographed the moment. I have many everyday moments with Mattie captured by camera and I am so glad I did this, as they remind me of the strong willed, free spirit he will always be.
Quote of the day: Today's coronavirus update from Johns Hopkins.
- Number of people diagnosed with the virus: 42,048,376
- Number of people who died from the virus: 673,464
I have to admit I have never met a family with 7 children before, and all the children's names started with either a J or a L. So it took me a while to remember who was who. But our 2.5 hours together flew by and we all enjoyed the energy the children brought into our home. They loved the pool and were excited to be having brunch with us.
This is what I said at the event:
Margy came into my life in a unique way in 2015. We did not meet at a hospital or clinic, and I did not know her firsthand as the play lady. Instead, we met on Facebook because we had a mutual friend in childhood cancer.To say we became instant close friends is not an exaggeration. She understood my grief right away, as I am a mom who lost her only child to cancer. But she also deeply valued the work of my non-profit, whose tagline is IT’S NOT JUST ABOUT THE MEDICINE. This maybe Mattie Miracle’s tagline but it truly was how Margy lived her life as she instinctively understood that children and their families need emotional and social support to help them cope with cancer and manage the long-term effects of medical treatment.I learned quickly that Margy invested deeply in those she knew. In fact, Margy wanted to know more about my own childhood cancer journey with my son, so she took it upon herself to read every entry of my daily blog. Which is an undertaking because I have been writing for over 12 years. But Margy read most, if not all my postings and even left me messages with each day’s entry. I loved her messages back then, but now I cherish having her thoughts, feelings, and reflections in writing.Many of you here can probably recall story after story of how Margy helped you, your child, and other families. You are lucky to have had Margy support you through your family’s cancer journey and I wish my son could have experienced her as well. Since I know they both shared a love for creativity, humor, and deeply connecting with others. I learned about Margy’s commitment, devotion, compassion, and incredible memory for milestone dates through our six-year long friendship. I observed that your children weren’t just patients to Margy, instead, I would say that you all became an extension of her family. She cared, respected, and valued each child, sibling, and family member and she took great pride in the photos, artistic keepsakes, and cards she received from you over the years.As friends, we would meet up on a regular basis. Margy and I could chat, and I mean for hours. We always had something to say to each other, and we both could be frank and honest with one another. Which is a unique quality to have in a friend. Someone who could listen, absorb what you are saying, and not be judgmental about it. It was through our chats with one another that I learned about Margy the play lady and Margy the effective leader of a successful non-profit, Growing Hope. A non-profit that raised over $1million to support children with cancer.In many ways, Margy paved the road for many other non-profits to come, as so many have tried to emulate Margy’s incredible work and passion. Which is a true testament to her. But there is and will always be ONLY one Margy.Margy was a founding member of the non-profit, Growing Hope. A non-profit created in memory of a child named Karen. I never met Karen or her parents, but it was clear that Margy loved Karen and I have no doubt Karen loved Margy. Margy ran Growing Hope for 20 years and the lessons she learned from being Karen’s ‘play lady’ guided her work. Margy was a fierce advocate for children and families, and she evaluated her play lady and non-profit work as being successful NOT through glitzy photography and social media postings, but through her meaningful one on one connections and feedback she received from families.I had the opportunity to attend many advocacy events with Margy. One was at Curefest on the National Mall, and another was at Children’s Hospital at Sinai in Baltimore. Margy was an outstanding childhood cancer advocate. Most of us become advocates because we were personally touched by childhood cancer. In Margy’s case, it was just her calling. When she was around children with cancer and their families, she became what I called... Magnetic Margy. As people naturally gravitated and attached themselves to her. I specifically remember touring Children's Hospital at Sinai with Margy, and during the tour, I turned to Margy to talk to her! But she wasn't there! Where was she? She was at the art table in the clinic interacting with the children. She made many little friends that day.Margy had an incredible aura about her, and families trusted her, respected her, and knew she would always provide a listening ear and a compassionate heart. But one shouldn’t think that her caring and compassion made her a push over. Because Margy was a force, had a way of making her feelings known, and as a result made sure that children and families had access to the resources and care they needed.After Margy retired from Growing Hope, she joined the board of Mattie Miracle. This was a natural fit, as she and I share a similar vision about cancer care. It is hard to believe that my dear friend is no longer just a text message away. There are many times I have thought… what would Margy think? My heart goes out to Ken, Michael, Kristy, Bill, her grandchildren, her siblings, and nieces and nephews. You all meant the world to Margy, and I assure you that I will work hard to make sure that Margy’s memory and her mini wishes for fun activities and wish list items remain alive in our Mattie & Margy family grant program.Margy did not like good-byes. In fact, whenever we'd meet, instead of saying good-bye, she would say.... "Vicki Brown, I love you." So today, I won't say good-bye to my dear friend, instead I say "Margy Jost, I love you."
In fact, I think Peter gained further insight into my relationship with Margy by attending this event. Margy and I weren't casual friends. Instead, I would say we had an intense friendship and bonded over grief and loss, childhood cancer advocacy, and mutual respect. It was very special to hear Peter's reflections tonight, because he could see what I always felt about my connection with Margy. I was given this yellow mum today from the event, and it is my hope to keep it alive.
