When my chronically ill daughter was about five years old, a (hopefully) well-meaning family member got very angry at me for taking what they called unacceptable risks with her and her health. My family member went on to tell me all about a friend of theirs who had a similar-aged child who had a heart transplant and had since that time lived in a bubble. They were very proud of …
What my chronically ill daughter taught me about failure
When I was in medical school one day the dean stood up in front of my class holding a cheap, plain pen. He just stood there holding it for a minute without uttering a word. He then very slowly and deliberately said, “This, this pen is the most expensive tool you will ever hold. With this you will during your career spend hundreds of thousands of dollars.” He continued to …
The hospital that made us cut my child’s care in half
My daughter has a stuffed monkey named HaHaHa. He has been an important part of our family since she was about a year old. Before you make fun of his name, his name is HaHaHa because that is how a monkey talks. She takes his name very seriously and is not at all ashamed. He is, after all, her best friend. With a name like HaHaHa you cannot help but …
What a stuffed monkey taught me about comfort objects
Is it time to reconsider the age of medical consent for teens? This is a question I have been asking myself as my children are approaching 18. For many years, I’ve dreaded the thought of my medically challenging child turning 18 and suddenly being thrust into the not-so-warm and fuzzy adult world. I have nightmares about her navigating insurance. I cannot visualize my very passive and indecisive child on the …
Rethinking teen medical consent: Navigating complex health needs
My son was born in a small community hospital with breathing and heart issues requiring transfer to a children’s hospital several hundred miles away. I arrived at the children’s hospital, worried, exhausted, and overwhelmed many hours after he did. Everything had happened so quickly my head was spinning.
After I checked on my son, I was directed to the Ronald McDonald house. I arrived in the wee hours of the morning …
How a simple chore transformed my perspective on medicine
My daughter was born with cystic fibrosis (CF). CF has been a catastrophic disease, historically fatal in childhood. CF is not pretty; it affects nearly every organ system, slowly and systematically damaging them. People with CF have thick, sticky mucous, which clogs their airways, pancreatic ducts, sinuses, and intestines. This mucous causes numerous health issues.
CF has been around for a long time. In the Middle Ages, a poem warns parents, …
Surviving and thriving: the new reality for chronically ill children
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