I've secluded myself in a hotel room this weekend to work on writing stories for our book. Today I wrote one of my own stories. As I sit here reading it, it makes me cry. It makes me cry not only because of the importance of the message, but because I realize how incredibly fortunate we were to have some of the most amazing doctors care for Jack. They are not just amazing clinicians, they are amazing human beings.
I really miss them.
I was sitting at my desk at work when my cell phone rang. I knew I had to answer it because my six-month old son, Jack, was in the Pediatric ICU (PICU) at our Children’s Hospital, where he had been for the last two months. The doctors didn’t know what was wrong with him or why he couldn’t wean off the hospital ventilator and breathe on his own. They were in the process of conducting a series of tests and, at the moment, he was stable, which made it possible for me to work a few hours each day.
I answered my phone fearful it might be a call from the hospital. On the line was the neurologist who was caring for Jack in the PICU. A week prior, a muscle biopsy was taken from Jack’s thigh to test for various known neuromuscular diseases. One of the diseases they were testing for was called Merosin Deficient Congenital Muscular Dystrophy (MDC1A). I was told up front by the neurologist that we did not want Jack to be positive for MDC1A because it was a devastating disease that would confine Jack to a wheelchair.
In a genuinely relieved voice, the neurologist told me that Jack did not have MDC1A. She was happy. I was happy. Although, I wasn’t convinced Jack had a muscle disease at all. He had a rough start to life – born seven weeks premature and then, when he was two months old, he had surgery to correct a congenital cardiac anomaly. He just needed time to grow and get stronger. The suggestion that he had a muscle disease wasn’t in my realm of possibilities.
After the neurologist shared the good news, I pushed her to give me answers I wanted to hear regarding Jack’s prognosis. Knowing now that Jack didn’t have MDC1A, I boldly said to her, “You can’t tell me that Jack won’t ever walk.”
This neurologist has years of experience specializing in neuromuscular diseases at one of the top medical institutions in the country. I suspect she had a good idea about Jack’s prognosis based on her evaluation of him, even if his specific disease was not yet identified. However, rather than tell me it was unlikely Jack would ever walk, she said to me, “I can tell you that I don’t have another patient exactly like Jack.” And she left it at that.
The impact of that simple statement was profound. What the neurologist gave me that day was hope. By not laying out all the possible negative scenarios for what Jack’s future might hold, she didn’t steal my hope that day.
Jack was ultimately diagnosed with a rare form of congenital muscular dystrophy when he was seven years old. Jack never walked. He never breathed on his own without the support of a ventilator and he never ate food by mouth. However, on that day I made my bold proclamation to the neurologist, had I been told that Jack would never walk, talk, eat or breathe on his own, I don’t know that I would have been able to get myself out of bed every day. By not taking away my hope, this doctor allowed me to believe that everything I did with Jack during his early years – trialing him off the ventilator, putting him in his stander, trying to get him to eat by mouth – were all worth the effort. She allowed me to accept Jack’s ultimate destiny in my own time and on my own terms. And in doing so, she allowed me to give Jack every possible chance to reach his full potential within his limitations.
The importance of hope cannot be overstated. Having hope does not mean having an unrealistic understanding of your child’s prognosis. We live the truth day in and day out. Parents are able to distinguish between hope and wishful thinking. Hope is what allows you to take a chance on the future. It’s what gave me, as the parent of a child with a devastating life-limiting disease, the strength to get up each day and “keep on keeping on.”
How information is conveyed by a physician can go a long way in preserving hope. By choosing words that didn’t steal my hope when Jack was six months old, Jack’s neurologist was instrumental in ensuring that Jack had the best quality of life for the fifteen years that he lived.