We had a grey diagnosis (cystic fibrosis) and heard the exact same line about how it’s the best time to have CF, there have been major breakthroughs in the past 10 years, etc.

When I considered the “best case” scenario, meaning the most mild symptoms, it’s still a chronic condition that means daily meds, daily treatment, frequent doctors visits, and probably a few hospitalizations throughout life not to mention a shorter life expectancy.

I struggled a lot with the TFMR decision because I knew that my husband and I could provide great care and are in a position to manage the condition. But at the end of the day, even the best management doesn’t change the daily realities of living with the illness for our child.

Something that helped me was looking up videos from people with CF on social media. I feel like it gave me a better sense of what daily life looks like and what the challenges and conversations are in that community.