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Sean’s Burgundy Thread: Moving Mountains
By: Sean Murray; Published: May 7, 2013 @ 2:24 pm | Comments Disabled
Anyone living with multiple myeloma knows that the emotional hurdles faced can seem as formidable as the physical challenges.
Despite nearly five years of trying to maintain an upbeat outlook on life while sparring with myeloma, I still wrestle with the fact that there are circumstances that I can’t control and mountains that I can’t seem to move.
And just when I hit a low point, something happens to rejuvenate my spirits.
On a recent Sunday afternoon, Sophie G., a bright, outgoing, straight-A eighth-grader, deliberately made her way into the packed gymnasium of our hometown Intermediate School.
My family and an impressive cross-section of three or four hundred enthusiastic local citizens filled the bleachers and the sea of folding chairs set out across the gym floor. After we had all stuffed ourselves to the gills with a good old-fashioned spaghetti supper, we reveled in the music of a popular local band.
Parents, grandparents, and gaggles of children whooped it up beside teachers, principals, and guidance counselors. Ministers, nurses, and hairdressers rubbed elbows with a Missouri state representative, as construction workers, stone masons, lawyers, members of the school board, and the district superintendant joined in on the fun. Coaches, student athletes, both of our town’s veterinarians, the county prosecutor, a doctor or two, and many others added their energy to those assembled.
There was electricity in the air, and it was obvious that something important was happening.
Just in the nick of time, Sophie, led by her mom and dad, arrived as the real celebration began in earnest.
I should explain that Sophie is no ordinary kid. As a sixth-grader, she came up with a unique idea to raise funds for not-for-profit organizations and needy people in our area. She and her mom, a school secretary, approached the district administrators armed with a plan that they had dubbed the ‘Helping Hats’ program.
The idea was this: On one day of each month, students would be allowed to wear a hat in school, all day long, if they would donate one dollar to that month’s designated charitable recipient. Lo and behold, the school board granted the request and several area businesses agreed to match the funds received.
Helping Hats caught on like wildfire! In less than three years, the program has distributed more than $20,000 to the Humane Society, to victims of the devastating 2011 F-5 tornado that ripped through neighboring Joplin, MO, and to many other worthy causes.
For her innovative efforts, Sophie has received the American Red Cross ‘Everyday Heroes’ Award, was honored by the Missouri legislature, and is to receive a Prudential Spirit of Community Award in Washington, D.C., later this month.
As Sophie and her parents entered the gym, they were surprised by the spontaneous standing ovation and thunderous applause they received.
As a father, I’m well aware just how much teenage girls love their fashion, but I noticed that the style of Sophie’s outfit was a bit different than most.
Her head was festooned in a blaze-orange bandana, orange being her very favorite color. Even though this wasn’t a costume party, Sophie wore a mask that concealed her face, save her expressive eyes. Her comfortable, baggy pants were topped with the same t-shirt that many in the audience proudly wore to mark this special get together.
Printed boldly on the cotton shirts were the words ‘Team Sophie.’
But Sophie, this big-hearted kid who showed us all the power of reaching out to help others, wasn’t there to receive an award for Helping Hats. She was there for an even more compelling reason.
Sophie had very recently been diagnosed with acute lymphoblastic leukemia (ALL). Like myeloma, ALL is a dangerous cancer of the blood.
Her all-too-familiar look of head covering, no hair, face mask, unrestrictive clothing, and a tired countenance, conveyed that Sophie had been enduring chemotherapy at a children’s hospital four hours away in Kansas City.
As you can understand, no one was allowed to get near Sophie because of her suppressed immune system. Air hugs and waves were the order of the afternoon. And there were plenty of them.
It took super-human restraint for her fellow volleyball players not to rush in and scoop her up.
My heart ached for her parents and her family. Standing lovingly beside her, you could see how proud they were. And you could imagine just how scared they were.
To raise money to help offset the family’s immense medical bills, dozens of items were donated for a post-dinner auction.
As the auctioneer lightheartedly cajoled the crowd to open their wallets, many special moments took place. A simple lemon meringue pie was won after a heated salvo of bids that ended with a sales price of ... $200! The winning bidder then immediately put it up for auction again, and it fetched another $250! Sophie’s third grade teacher raised $300 by shaving his head. Others, including Sophie’s family, had shaved their heads, as well.
A lot of money was raised through the generosity of our small-town friends and neighbors helping out one of our precious own. But above all, our community came together on that afternoon to let Sophie and her family know that they were loved.
For this month, the students wanted the Helping Hats funds raised to go to Sophie, but true to form, this selfless eighth-grader chose to earmark the donations for a teacher recently diagnosed with breast cancer.
Even in her sickness, Sophie continues to reach out to others. She is not giving up. No way.
And that’s my point.
In the midst of your storms and dark times, do not for a minute think that you can’t make a difference in the world around you. Sick or well, young or not so young, reach beyond yourself to help someone else. Share your myeloma story. You have wisdom and perspective born through much adversity.
Sophie will continue moving mountains in her life. And so can you and I. Keep the faith.
Sean Murray is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of his columns here [1].
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