Recognising Illness in a Loved One: The Obligation to Speak, the Pull of Silence

The day Marcus died the jasmine scented wind sent blossoms eddying along the footpaths. The day before I had watched him sleeping on the fold out sofa bed in the family room. With the covers pulled up and his dark lashes resting on his pale cheeks he looked like any other sleeping child. When he was awake his lack of motor control told another story. He could not hold his head and torso steady, he slumped in his wheelchair, he could no longer talk and often used his feet to communicate. Watching him sleep I was reminded of how much he looked like his mother, same fine bone structure, same dark lashes and almond shaped eyes. I remembered him as a baby in the park, smiling up at Stacey; the amazement I felt seeing my friend's smile on another's face. I remembered Stacey smiling back at him, saying "you are my best surprise ever"; a surprise because he was conceived naturally.

That day in the park was before we knew Marcus was unwell. He was a smiling baby, just a few months younger than my second son. His story still held as much possibility as the other children's stories.

Even before we knew he was unwell, Stacey worried about Marcus. Parents inevitably worry about their children, but Stacey's worries had, although I did not appreciate it at the time, a different quality to them. She told me that Marcus often seemed to be in his own world and she was concerned that although he liked other children he rarely joined in their games. I reminded her that all children are different and that Marcus seemed a little like my eldest son who was anxious and reserved.

One day, just shy of his third birthday, Marcus was taken to hospital via ambulance. He and his sister, Molly, had been playing outside when she ran into the house to say she could not wake him up. Stacey found him outside covered in dirt having a seizure. My husband and I were apprehensive. We are both doctors and we knew that an afebrile convulsion could herald a serious illness.

Following multiple tests Marcus was diagnosed with epilepsy. His parents were understandably sad and anxious, but epilepsy felt like something that could be managed. Months passed and although Marcus' family adapted to the diagnosis, Stacey became increasingly concerned about his development. Marcus' neurologist did not share her concerns so Stacey waited for his routine child health nurse review.

In January, not long before his child health review, I realised that something was wrong. I had taken my children to Stacey and Daniel's house for a barbeque and we had chocolate cake for dessert. The children ate their cake outside. I went outside and explained that if they wanted a second helping they needed to bring me their plate. Molly and my sons ran toward me eagerly, plates in hand, but Marcus looked perplexed. I explained again, but he remained baffled. I asked if he wanted more cake and he said "yes" and began to walk toward me, I reminded him to bring me his plate and he turned to get it, but then, without collecting the plate, he turned to walk to me. I knew he was not trying to be difficult so I fetched his plate and gave him his cake, but I was worried; surely the average three and half year old could follow the instruction "bring me your plate", especially if the outcome was more cake.

I was worried, but I was not brave. I knew Marcus was due to see the child health nurse so I did not speak to his parents about my concerns. I was their friend, not their doctor, and I wanted someone else to tell them that something was wrong.

My feelings were complicated by the fact that my concerns where nebulous; I knew something was wrong, but I did not know exactly what. From a medical perspective, I did not have a diagnosis and I did not know how to...