My mind was wandering. Big time.
We go to see the retina specialist in Boston tomorrow. The idea that something 'more' could be wrong with my Max has me bathed in doubt. What else have I missed? I must have looked in his ears dozens of times since he was born, never wanting to make an unnecessary trip to the pediatrician's. But I never thought to double-check anything after an appointment. I only tried to prevent unnecessary appointments. I never checked his eyes. It was the same approach I took with my girls. If any of them actually had an ear infection, I would always take them to the pediatrician. Aware that I worried a lot about my own kids, I have always figured it was better if I left their medical care to someone more objective. I have always assumed that if my fear affected my judgement, it would be a negative thing.
We have a beautiful little bookstore down the street. I love to go in and wander around, just looking at the books is soothing. A little over a month ago, I picked up a nice solid hardcover labelled "a family memoir" as I browsed. When I read the cover, I realized it was a book about a boy born with congenital heart disease who dies as a teenager.
I dropped it quickly back on the shelf as if it had burned my hand and found a different book that didn't hit so close to home. But I couldn't stop thinking: "What if there is something in that book that I need to know to keep Max safe?" It haunted me for a few weeks until I came home with a copy of Immortal Bird last week.
So many things reminded me of us and Max. The book is about what can go wrong if you trust too much in medicine, in doctors, in the healthcare system. This is a story about why science can't always squelch that little voice in your head. This is a story about why we need to heed our fear.
This phenomenally educated family's first born child had prenatally undetected severe congenital heart disease. He had a Fontan operation which bought him many years but then developed complications and had to have a heart transplant. His family gave him so much during his precious years on this planet, but medicine ultimately failed him despite his father's constant pursuit of perfect care for his perfect son.
Max has had a cold while I've been reading this book. I started his inhaler and gave him ibuprofen. Everyone else in the house had it already. I tried not worry, watch his breathing as I normally do and waiting for a fever over 101 for more than 3 days to call the pediatrician.
No fever, just a cough and runny nose. But my nanny's daughter has been sick a lot lately and she had a fever. She was worrying me, so I suggested our nanny bring the kids to me at the end of my day and let me check her daughter. I plopped Max and her daughter next to each other on the exam table.
"Check me too, Mama!" Max requested, not to be left out of anything.
So I did. And two glaring bright red pus filled ear drums met my gaze into his unsuspectingly cheerful ear canals.
"Do your ears hurt, Max?" I asked.
"Yes, mama. My ear hurt," he said as he put on a sad, sympathetic face and patted both his ears.
Up until that very moment, I would have always called his pediatrician in such a situation. Always. I assumed my fear would negatively affect my ability to provide medical care for those I love the most. But now my perspective has changed. I was the one who found his eye problem. Doron Weber was the one who kept his son alive for as long as he did. Trusting in medicine may have allowed Max to lose sight in one eye and not allowed Damon Weber to live all of the years he did.
I called my husband to see if he agreed with my choice and we called in a prescription for Max's antibiotic.
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