Cystic Fibrosis is a disease that causes the lung capacity of those who have it to reduce over time because of a buildup of what my parents used to refer to as “gunk”. My siblings’ lungs aren’t able to do away with excess fluid, resulting in worsening lung capacity. When Jack was born, the average life expectancy of someone with cystic fibrosis was under 40. I remember hearing that as a kid and thinking, “I could be a parent and not have my siblings around.” This reality registered with me from a very young age and the severity of the condition was never lost on me. All three of us had an early loss of innocence because of how real life felt.
Thankfully, we're really fortunate and Jack and Kate have had less severe cases than many people. Jack has had some issues with his digestive system and his cystic fibrosis has led to pancreatitis. It’s his pancreatitis that’s actually been much more problematic for him and still is to this day. My sister, on the other hand, shows no signs of cystic fibrosis, despite her having the two associated genes for it. We’ve had a very unique experience with this disease. We know so many families who have had more severe instances of cystic fibrosis, experiencing double lung transplants or lower life expectancy.
Having two younger siblings who needed more attention and care meant that I had to be self-sufficient from an early age. A typical day would look something like: I would wake myself up, make myself breakfast while my brother and sister did some of their morning physical therapy exercises, then I would walk myself to the bus and go to school. The responsibility was really on me to complete my homework and do well in school, because the reality was that no one was checking. Knowing that I was accountable and independent is one way that my parents could navigate these early scary stages of having sick children.