When Anthony made his earthly appearance early on a frigid November 1986 morning, he was well over 9 lbs and screaming like a banshee. With that hefty physique and lungs to match, who would have ever guessed he was destined for a battle with Crohn’s Disease, something that would voraciously gnaw his 5’9′ frame to just over 100 lbs and barely holding? Now, 25 years later, like Rocky’s crusty boxing coach, Mickey Goldmill (Burgess Meredith), I move anxiously, deperately, furitively in the corner of the ring as I watch my beloved son bob and weave against his greatest foe. I yell obscenities at his foe. I shout encouraging affirmations to Anthony above the din of his confusion and anger. I hold the towel to wipe the tears from his face. I feel helpless.
Anthony was diagnosed in the late fall of 2011 but it is only now that we are seeing some action. Part of the delay has been due to doctors not really communicating with each other, part is due to doctors medicating symptoms vs treating the disease and part is because his primary care doctor, who was just beginning to understand his role is coordinating medical efforts at the base level, died a premature death just hours before his appointment with Anthony. And so another frantic delay as we searched for a new and competent primary care provider.
During the delays I began reading everything I could find. I made contact with Indiana’s Crohn’s and Colitis Foundation in Indianapolis and I began searching for others like Anthony and others like me – frantic parents who wished they could ring the bell that would stop the pain, stop the mountains of medication, stop the fear their child felt – stop the disease.
This is the way it is – In the Beginning . . .