The Sunday Series (93): #livelifelikeclaire
For nearly everyone there is a light which emanates from their soul. For Claire Marie Wagonhurst, the color of her light was coral. Not pink, not orange, not salmon... but coral. Claire's favorite color. A beautiful hue which defined her life and the color she brought into the lives of others.
The cold, hard truth at the center of all of this is Claire passed away on Oct. 16, 2014, at the tender age of 17. Claire is the daughter of Marianne Banister and Rocky Wagonhurst, little sister of Hillary Wagonhurst. Claire's death -- simply the unthinkable, unfathomable, heartbreaking consequence -- of adolescent melanoma.
"It was on her ankle. It was a mole she was born with," says Marianne. "Claire saw a dermatologist annually since the age of two. She always wore sunscreen. The mole looked fine seven months prior. She never went tanning. We did everything right. She developed melanoma simply because she went through puberty and her hormones changed."
As the message on the Claire Marie Foundation website, (http://clairemariefoundation.org/) explains:
Often melanoma develops as a result of hormonal changes during puberty. Melanoma on a child can look as innocent as a wart and can develop in areas of the body not exposed to the sun. Melanoma is one of the most deadly and aggressive forms of cancer and yet few people realize it can claim the lives of our young. It is the second most common form of cancer for adolescents and young adults between the ages of 15 and 29 years old.
Claire was 14 when the mole on her ankle started to change. The doctor recommended having it removed, but because of where it was located, right on top of Claire's ankle bone, a plastic surgeon would need to do the work. "We couldn't get in to see a plastic surgeon for three months," says Marianne. "I was told in the office that kids don't get melanoma. I was told that. By the time we had it removed it took a month for the biopsy results. The technician ran the test 2 or 3 times because based on Claire's age he couldn't believe what he was seeing."
The biopsy confirmed the diagnosis of melanoma. Despite being in remission twice, by her 17th year, cancer claimed Claire's life.
A mother's deep loss: "The moment that you died, my heart was torn in two. One side filled with heartache, the other died with you. Remembering you is easy, I do it every day. But missing you is a heartache that never goes away." -- Author Unknown.
The excerpt is from a poem which Marianne says has touched her deeply. "I absolutely know Claire is with me, and if your heart is open to it then that is what happens," says Marianne. "I am not the same person and I never will be again, nor are her father, sister, or grandparents and that is a deep, deep loss. But Claire would be so angry with us if we rolled up in a ball and went away. The Claire Marie Foundation is something we are all doing together as a family to raise awareness, clarity and hope in the fight against adolescent melanoma, because I know Claire would want others to know. Marianne believes skin screenings for children should be part of every annual exam, but it's not something pediatricians are trained to do, so a dermatologist should be part of the yearly routine checks. "Twenty-five people have notified me to say they have found pre-cancerous moles on their children since we raised the flag," says Marianne. "That means 25 people who have been alerted and it might just save a life."
A father's determination to cope: Claire passed away early in her senior year, with her college career just on the horizon. Just two days before she died Claire was accepted to the University of Alabama to study design. She had also gained acceptance to Georgia Southern. Rocky and Claire had decided to make a date to see the Alabama football team play against Ole Miss, wherever that game might take place. It turns out it would be held at Alabama the following fall. For Rocky, his idea to honor his daughter and her memory was to take her to college by bicycle, actually to both colleges where she had been accepted... and to honor his long-standing date with Claire to see the Alabama-Ole Miss game. Claire would be by his side, at least in spirit.
Rocky started his marathon cyclist ride, his Ride with Claire, in Charleston, South Carolina. He made the 630-mile trek to Georgia Southern and then on to Alabama, to honor his commitment to his baby girl. For Rocky, Claire was the wind at his back when the ride was easier, and she was the spirit of the butterflies who kept him company when the roads got rough.
A sister's undying devotion: Hillary is five years older than Claire, but Marianne says Hillary basically put her college career on hold while Claire battled the disease. And it was Hillary who walked across the stage to accept her sister's high school diploma at Claire's high school graduation. "Hillary is the best thing," says Marianne. "She has been here with me and she does a lot of the social media to make sure everything is how Claire would want it. She is the protector of her sister's legacy. I'm just so proud of her."
Claire Marie: An insight into Claire's life journey comes from an excerpt from her college application essay:
"Melanoma has taken its toll on my life; most notably stealing my innocence and the frivolity of youth. But as with all things in life there is a great gift that comes wrapped in pain if you look deep enough. I have the gift of family, friends and faith. I am proof that life is not fair. It's best just to accept that fact. Most importantly, I know I have the strength, fortitude, humor and commitment to get through any challenge or storm that may blow my way. Although I must say a little more sunshine would be greatly appreciated."
Marianne says if there is one lesson she wants everyone to know it is that every child is a gift and you should embrace and soak in every moment of every day and find something happy and joyful in it. "I try to find more happy days than sad days. I continue to look for 'winks' from Claire and coral in the sunset and know that she gave it to me."
Until next time, thanks for taking the time.
Mark
markbrodinsky@gmail.com/http://markbrodinsky.com/
Visit the Claire Marie Foundation to learn more and to help save lives: http://clairemariefoundation.org/