I was watching news coverage of the devastation in Haiti, trying to imagine the depth of suffering being experienced by tens of thousands of families at that very moment, when I heard a sound from my son’s bedroom. A sound which had become all too familiar.
My twelve year-old, Matthew, was screaming in pain, as he had been doing for the past few weeks. In November of 2008, Matthew was diagnosed with a little known and even less understood neurological condition, now referred to as CRPS: Complex Regional Pain Syndrome. In simple terms, pain signals from his foot are constantly being sent to his brain, even though no injuries are outwardly apparent.
He was originally misdiagnosed with a broken ankle, prompting doctors to place his foot in a cast for several weeks. When the cast was removed, the pain continued to escalate and it took a team of physicians and trips to the emergency room, a series of MRI’s and X-Rays, to finally settle on this one diagnosis.
Matthew’s pain is so severe that he is unable to touch any part of his foot without triggering spasms of intense, burning agony. I fashioned a foam pillow for his calf, allowing him to rest his leg on top of the covers, safely supporting his foot well above the bed. Even his ceiling fan had to be turned off because it created a draft of daggers against his foot.
It is difficult to express the feeling watching your son cry and scream and experience so much pain that they say they wish they were dead. Even though he later admitted that he did not mean it, those words still pierce the air with severity and seriousness.
As parents, our first instinct is the overwhelming desire to protect our babies. The inability to relieve the pain by even the smallest of degrees is, to this father of three, a helpless and horrible feeling. A twelve year-old’s days should not be spent in bed, away from school and his friends, and traveling to physical therapists, psychologists, neurologists and psycho-pharmacologists.
His initial battle with this syndrome and his “cure” less than two months later prompted me to write the chapter “Miracles” in my new book, The Last Day of My Life because his recovery was, simply put, sudden and miraculous. Ironically, while I was in New York, promoting this book of gratitude and hope, Matthew had a full relapse. His world and ours were once again shattered. The debilitating pain, which we all thought was gone for good, now frightened and angered him. CRPS was once again testing the resolve and strength of this wonderful boy. As his father, it humbled me and clearly reminded me that, even during that full year when Matthew was well again, I had fallen into a typical trap: I had taken his health for granted.
If you are a parent, be grateful if your child is healthy. Because nothing tests your spirit and faith like watching your child suffer. I know that my boy will recover. I have to believe that because, right now, it’s the only thing that bridges the hope and knowledge of his recovery.
Wherever you are right now, take a moment and honestly consider the blessings in your life. Big things, small moments. It’s never too late to count your blessings.