From an early age, I remember the life expectancy for people with CF was 35. I have shaped my life around that number. When I was in high school, my mom’s health started to fail, and the number of hospitalizations and the duration of each stay increased. My mom was 40 years old, and one month shy of turning 41, when she passed away from CF. Witnessing her battle with CF in its later stages was difficult. It showed me a glimpse of what my future might look like when my CF progresses.
My mom ran a full-time daycare service, caring for up to seven kids for more than eight years. However, as her health started to decline, she had to stop working due to her inability to lift heavy things, clean, make snacks and lunches for the kids, or provide general care for them. When I got home from school, I often felt like I needed to help out, so I would help clean up, feed the kids, entertain them, help with dinner, and after dinner, I would do dishes, and then work on my homework.
My mom loathed her dependence on oxygen, and soon we were unable to go anywhere or plan to do anything that involved extended periods away from the house. We could only bring so many oxygen tanks. Whenever we went places, there needed to be wheelchair access because it became too difficult for her to walk without the use of a wheelchair.
Although she struggled for more than four years, she poured her heart into being a devoted mother to my little brother and me. Daily tasks became monumental challenges — taking a shower, walking, or just getting in and out of the car would lead to coughing fits and breathlessness. She dealt with CF-related diabetes, constantly balancing her sugar intake, and there were moments when she would go pale and clammy, drenched in sweat.
At home, she found joy in gardening despite the struggles she faced. She was so obstinate and stubborn, she’d make a mule jealous. Often, I would follow the trail of the oxygen hose to find her in the backyard, exhausted but determined, carrying a 30-pound bag of potting soil. I would urge her to put on her oxygen, which in dark humor fashion, she referred to as her “leash.”
Our conversations increasingly focused on her concerns for me and my CF management. She worried that, like her, I might wait until it’s too late to care for myself. I managed to stay relatively healthy and active for over seven years, but in 2016, I was hospitalized for the first time. This was the first time that my doctor in Sacramento had seen or heard from me since my mom had died in 2009.
My mom and I had the same lung doctor for our CF, who is located in Sacramento, and is over four hours away from home. So, my mom's and my access to care was limited to how often we would make it down to Sacramento, or how sick she became.
In 2009, I graduated from high school and began my first year of college. Despite my mom’s poor health and multiple hospital visits that year, I wanted to go to punk rock shows — perhaps as a way to distance myself from the harsh realities of her worsening condition. She always encouraged me to enjoy my youth and expressed to my stepdad her desire for me to be a kid and, at least for the moment, be free from the weight of adult worries. Her belief in me was unwavering, and she always saw my potential. She wanted my childhood memories to be happy and not be overshadowed by illness.
In October 2009, her lung collapsed, and she was hospitalized, yet she returned home within four weeks. She orchestrated a true surprise party for my 18th birthday the following November. What made it unforgettable was that she secretly contacted my friends, inviting them to my birthday party with specific instructions on when to show up. After a day of shooting guns with my little brother and stepdad, I returned to a house filled with love. My mom’s exhaustion was apparent, but she was beaming with love and joy at my reaction to the surprise. There were two giant collages of me in the living room with pictures from when I was born up until my high school graduation the previous year. I still cherish the card she gave me, which is a beautiful reminder of her love and strength.
A week after my birthday, her lung collapsed again, and she had to be medevaced to UC Davis. This time, she knew that she wasn’t going to make it out of the hospital. She started making phone calls and reaching out to various family members who lived across the country. She wanted one last Christmas dinner together with family, which we got to have with my grandparents, aunt, uncle, and cousins. We had dinner on December 26, and later that night she slipped into a coma due to high CO2 levels. She passed away on December 28, 2009.
No amount of preparation can shield one from the loss of a mother. I lost my greatest ally, the one person who truly understood my struggle.
CF is isolating. Contact with others who have CF is discouraged due to cross-infection risks. I attempted to connect with others with CF in chat rooms back then. At first, the shared connection was awesome, but soon, people I’d talk to stopped being online, messages were left unread, and they too faded away. I couldn’t handle the crushing emotional weight.
My mother was very outgoing and independent. She never complained or made a big deal about having CF, and she showed me “how” to live life with CF. She showed me how to be stoic in the face of adversity, which is a primary characteristic I have, and share with others who have CF, especially when it comes to the reality of life with CF.
I am currently taking Trikafta, and since starting treatment in late 2020, I have experienced the feeling of “breathing normally,” and my lung function went from 33% in 2020 to 98% last year. In 2009, one of the goals I set with my mom was to be the first in our family to obtain a bachelor’s degree in wildlife biology. I can best honor her memory by following through on this goal. In 2024, I returned to college and received my associate’s degree in liberal arts and natural sciences from the College of the Siskiyous. Then, I enrolled in Unity Environmental University’s distance learning program online. I am one year away from earning my bachelor's degree in wildlife conservation.
It's been 15 years since my mom passed, and there isn’t a day that goes by that I don’t think about her. The weight and depression of her death have finally lifted, and now I can live my best life and, in doing so, live the life that she wanted for me.
I will leave with this quote from Ray Wylie Hubbard: “And the days that I keep my gratitude higher than my expectations, well, I have really good days.”
Interested in sharing your story? The CF Community Blog wants to hear from you.
