They say time heals all wounds but I disagree. Maybe time can help you breathe again, but some wounds are just too big to ever mend. Ask anyone who has lost a child. Ask my friend Maria, whose daughter Brianna passed away in May as she waited for a heart transplant.
Brianna was a beautiful eight year-old girl in Dreamer’s class, her brother Luke was in Fearless’. When I returned from Ironman Florida, I found out she had left school, and was at the Shands Heart Clinic at the University of Florida in Gainesville. She was diagnosed with restrictive cardiomyopathy, a rare heart condition. Her family was launched into a race against time as she was placed in the heart transplant list. Brianna spent the last four months of her life at Shands.
Brianna’s story affected me deeply because a child’s health is a gift. And just as this was Maria’s child, it could be one of mine. I felt it was my duty, as a mom of two healthy boys, to help in whatever way I could. An entire army of friends, family and strangers felt as I did and Brianna united a community who just wanted to help. You can read about our efforts here, here, and here.
Throughout her time at Shands, we, her followers would be updated through facebook. We would receive pictures mostly of a smiling and brave little girl. I guess as an outsider I wanted to believe that the pictures I saw where the totality of the story going on with Brianna and her family. But of course it wasn’t.
I’ve spoken to Maria, Brianna’s mom, several times but I don’t have the courage to ask what it was like at Shands. Between hope and fear lies a universe. Between tests and surgeries lies risk, and though a child, Brianna was aware of her condition and lived that roller coaster as much as anyone else.
There was one respite though. Almost every day, Brianna received therapy from a loving group of artists. Be it art, music, or writing Brianna had a precious space where she could be just an eight year old little girl dreaming big, and expressing herself.
Maria understood how much this meant to her, and would protect that hour so that it was rarely missed. It was a sacred space.
Yet no amount of art therapy, or procedures, were able to keep Brianna alive, and after a courageous struggle she passed away. She left behind a hole bigger than the universe itself, impossible to ever fill or replace. She will exist in our hearts and memory forever as eight.
My friend Connie, who lost her son Matt when he was killed by a drunk driver, always says her biggest fear is that people will forget who Matt was, that he existed. She is happiest when she is speaking about him, remembering or honoring him. That’s probably true of most grieving parents, they want their children to be remembered and Maria found the perfect way to do that.
She set up a fund “Brianna’s Hopeful Heart” for the Arts In Medicine program at Shands Heart Clinic in Gainesville, Florida. This program will ensure that art, music, and writing therapy will continue to be given to children who are in long-term hospitalizations. More children can benefit from that “sacred hour” as much as Brianna did.
I heard a song Brianna wrote about the things she was thankful for. Though she was not able to record it, I could almost see her smiling as the musician sang with his guitar intonating the words as she would have done. Maria tells me there were other projects she was working on, things that kept her motivated and brave. Including one for me and others who raced for her … she was going to call those “Heart Warriors.” That broke my heart. The piece below is a a thank you to the employees of American Airlines who had generously donated to her transplant fund.
As Maria explains:
She titled it “Fast Flying Planes” and each of the paths represents one of her bravery beads that she received for her courage undergoing weekly PICC line dressing changes. I won’t go into it because these dressing changes were uncomfortable, painful and sometimes extremely difficult to get through. But she endured them, and she loved her beads very much. They meant a lot to her.
That is an example of how her art helped her process and face what was going on in her life at the hospital. Art helped her process something painful and difficult.
When I think about my upcoming races, the Swim for Alligator Lighthouse and Ironman Arizona I know it will be a challenge. Neither are easy feats. There is fear, challenges, exhaustion, and thoughts of giving up. I need to hang on to something as I swim, bike, and run. I need to remind myself that what I am going through was a choice I made, something Brianna didn’t get. There is a finish line to cross, and a battle to win. If things go as planned, I will finish the projects I am working on.
Therefore I am racing throughout this year first to honor Brianna’s struggle, but second to support Maria. I want to show her that we will never forget her little girl. That Brianna’s life though brief, was important. That we will always support her and never let Brianna be a memory faded away. I created a campaign to collect funds which will then be distributed to the University Of Florida Health for Brianna’s Hopeful Heart. There is more information about the program here. That is also a donation page, you can donate there if you prefer … it all goes to the same place.
I hope you will help. Any donation from $5 to $5,000,000 is welcomed. Please don’t think a gesture is too small. There is no such thing. Many grains of sand make a beautiful beach … like this one:
Help us make sure other children can benefit from the Arts In Medecine Program; and though Brianna might be gone, she will never be forgotten.
