I’m often pretty casual when I talk about them.
My daughter’s medical issues, that is.
When listening to me, some people may think I’m being flippant or minimizing serious issues like “surgery” and “hospitalizations” and “heart valve replacements”. And you know what? When I listen to myself sometimes I guess I can hear that, too. But it’s actually not the case at all.
When you have a child with a serious health issue, “routine” appointments are never routine.
Tomorrow we will be traveling for Evalyn’s cardiology check-up. Last November at the age of 8, she underwent her 4th cardiac catheterization where the stent in her heart that began to close up was ballooned open again. The cardiologists had hoped to put a new pulmonary valve in at the time as well, but were unable to, due to her crowded cardiac anatomy. The risks of performing the valve replacement at the time outweighed the possible benefits.
Today is Rare Disease Day.
Imagine taking your child to a new doctor for the first time. You sit in the exam room and give a detailed medical history for their chart. You mention the rare genetic syndrome that your child was diagnosed with in infancy. A concerned look washes over the doctor’s face. “Can you spell that, please?” they ask.