He lost. The long struggle to win was lost. But he never quit fighting. He might have been the weakest, but he was a strong fighter. And I was his eternal cheerleader. He was only thirteen when he died from the disease he was born fighting. I was only twelve when I lost my brother, Michael, my best friend. He taught me so much in those twelve years…how to fight the good fight, to never let struggle get you down, to appreciate what you’ve been given, and to have the faith that we’ve all been given a special path to travel in this life that will lead us to our purpose, and possibly, that purpose is to touch the hearts and inspire others to keep up the good fight.
His struggle to catch his breath, have a productive cough, or even simply convince someone to please pick up that Lego piece he had dropped for the hundredth time, stole every bit of the simplicity of life that we all don’t even think about, unless we experience life with a loved one who has a disability. Michael was born with Duchenne’s Muscular Dystrophy, a death sentence at birth. The cruelty of this disease was that he appeared completely healthy until around age two, when crawling and walking became difficult because his skeletal muscles were atrophying. I never knew any different. He was my brother, and I loved him. Period. I became his cheerleader to use furniture to help him stand up when he would fall down in kindergarten, I cheered him to drive faster, faster, when he got his first electric wheelchair in first grade. “Spin tighter!” I would exclaim, holding onto his wheelchair handlebars as he pulled me around on my roller skates. Even when the disease had robbed him of the ability to move his limbs and began destroying his internal muscles, I would cheer him, keeping both of us focused on the positive, even though we both knew silently in our hearts that his battle would soon be coming to an end.
The night he died, when we said goodnight, he and I shared our silent goodbyes with just a look. My cheerful smile that can often light up a room, was well practiced because of the beautiful years I was blessed to share with my brother’s joyous spirit. I hope my smile that night lit his heart brightly, full of the love he had shared with me in those twelve short years, teaching me that I may not be able to help everyone win the battles in life, but how important it is to cheer them from the sidelines.
The picture above was taken during the Jerry Lewis Labor Day Telethon in 1992, as I presented a donation check from the Universal Cheerleaders Association to help children with Muscular Dystrophy.