If Sam’s story were simple, I would’ve written long before now. But it’s not simple; nor is it easy. It is, however, ultimately uplifting. So, dear reader, please indulge me. I’ll get there, though you may find it an uncomfortable ride.
Born January 20, 2002 with bilateral clubfeet and unable to breathe, swallow or digest, Sam arrived before he was ready. Immediately after his birth, Sam was placed on oxygen and rushed to the NICU where he was put on a ventilator. From outside the NICU, we could see two nurses working with Sam around the clock. We couldn’t tell what they were doing, just that they were always busy. We learned later they were giving Sam a battery of tests including MRIs, spinal taps, EEGs, blood tests, and a thousand other tests of an unknown nature. All in the hopes of trying to find out why Sam was so critically ill.
Sam’s initial examinations revealed characteristics similar to a preemie. His lungs were not well developed, his body fat was below the desired weight, he was not responsive, etc. After being examined by neonatologists, pediatric neurologists and geneticists, Sam was diagnosed with Congenital Myotonic Dystrophy, a devastating form of muscular dystrophy. It was hard news. There was no cure and at the time, no prospects of a cure. Three days later, Sam’s baptism was expedited after Kirk and Liz were told to prepare for a loss. There was little to do except to keep Sam “first in our prayers and first in our heart.”
Against all expectations, Sam showed some improvement and his doctors began to debate whether Sam could be removed from the ventilator. This was an important step. If Sam was ever going home, he had to come off the ventilator. After two more days of observation, Sam’s condition worsened and the doctors decided the risk was too high. And so we waited – for something, for the “fog to lift” and for the path to be revealed. While we waited, Sam worked. And the product of his quiet work was revealed when he began to digest food and to move. With Sam’s improved condition, his doctors decided it was time to remove Sam from the ventilator. We were hopeful, even optimistic.
Two days later, Sam’s lung collapsed and he was immediately rushed back to the ventilator. I sat in an empty NICU lobby that Saturday night waiting to talk to a weary, tired Kirk. Around midnight, Kirk came out and I volunteered to stay. Kirk shook his head and told me to go home. I understood Kirk could not leave Sam. As I walked out of Baylor Hospital and across Gaston Avenue to my car, it struck me that Kirk needed to be with Sam as much as Sam needed Kirk. Just the two of them. Father, son. I drove down Gaston, turned on Abrams and wondered what roads Kirk was traveling in his mind. Did Kirk believe Sam would live to see tomorrow? Did he believe he could give Sam the strength it would take to make it through the night? Was he like me when I had traveled the dark, empty roads of rural East Texas in search of my father on an equally long and lonely night in March of 1990? Was he as desperate as I was, hopeful one minute, fearful it might be too late in the next?
By the following morning, we had the only answer that mattered. Sam’s breathing had stabilized and soon after the doctors took Sam off the ventilator for a second time. This time it worked. It was a stunning turnaround. Sam had turned the corner; he was on the road to recovery. We thought of it as “A Beautiful Day.” We still do.
This summer Sam joined his first baseball team, the Diamondbacks. The Diamondbacks are part of the Miracle League in Frisco. It’s not your average baseball league. These kids don’t aspire to join a select team. It’s not even about winning or losing. It’s about playing baseball. Playing baseball and having fun. My daughter Erin went to one of Sam’s games and quickly found herself on the field assisting one of Sam’s teammates. The young boy was as nervous as he was anxious. After every play, he turned to Erin and asked “is my father watching?” Erin knew he was deaf in his left ear and so she leaned to his right side and assured him that not only was his father watching, his father was proud of him. I suppose it’s a small anecdote in the scheme of things, but Erin learned something important there. She learned that boys like Sam and his teammate are like all other little boys. They want to play baseball. They want to make their parents proud. They want to be heroes, or in Sam’s case, superheroes.
My daughters don’t see Sam as “special” or whatever other euphemism you and I might offer. They see Sam as a cousin. They play with him the same way they play with their other cousins They love him the same way they love their other cousins. Sam isn’t different in Erin and Caroline’s eyes, he’s just Sam. Growing up with Sam, they don’t know what it means to be fearful of people who are “different” or “special.” They’re not threatened by people who look or even think differently from them. I suspect Erin and Caroline have learned more from Sam than Sam has learned from them. I don’t know if that’s true or not, but I do know that we live a more complete life with Sam as a part of it. Sam isn’t a burden, he’s a blessing. And no one realizes that more than Sam’s brother, Will.
Will understands well the challenges Sam has overcome since coming home. He’s watched Sam work with his physical, occupational and speech therapists. He’s seen Sam come home after a heel cord extension surgery and then watched Sam wear five consecutive toe to upper thigh casts on both legs in the course of five weeks. He’s seen Sam’s feet stretched, taped and splinted. He watched Sam wear prescription shoes (held together by steel rods) that rubbed terrible sores on Sam’s feet. He saw the helmet Sam wore and the hand splints. He’s helped Sam with his wheel chair and in the process learned what it means to be a big brother. More than that, Will’s witnessed the fearlessness that Sam handled these and other challenges. The next time Sam complains will be the first. The Florence and Allison families recognize the obvious here: Sam chose to overcome steep, steep odds and continues the battle every day. We are grateful for the opportunity of sharing a life with Sam, and with Will, Liz and Kirk.
Almost ten years ago, Sam exposed my lack of faith on that hard Saturday night. I couldn’t see the path. I’ve learned not to doubt Sam and promise never again to underestimate him. Instead, I’m content to keep Sam “first in my prayers and first in my heart.” Now and ever more. I know I’m not alone on that score. Nor am I alone in recognizing that there’s more we can do for Sam. When Sam was born, there were no prospects for a cure. There is now. Kirk and Liz will appreciate anything you can do to help them raise money for research for Congenital Myotonic Dystrophy. Consider it an investment in the faith Sam has earned.