My daughter’s 29th birthday prompts reflection, gratitude
With my CF, my daughter and I have been through a lot together
This month, my beautiful daughter, Claudia, will celebrate her 29th birthday. I was 24 and living with cystic fibrosis (CF) when I became her mother.
It’s now been four years since my double-lung transplant, and I’m currently fighting COVID-19 for the fourth time in four years. As the new year begins, I find myself ruminating about the miracle of Claudia turning 29.
When I was born in 1971, my mother was told my life expectancy was about 12 years. When I recall my own daughter’s birth, I cannot fathom what my mom went through upon receiving that news. I was fully prepared for my baby to at least be a CF carrier, but thankfully, she didn’t have active disease.
CF is brutal and unfair for everyone in the family. The experience of children whose parents have CF is very unique, but it’s rarely acknowledged and there are few resources available. But with advancements in CF research and treatments, there are now many more children being born to adults with CF. The hope is that these advancements will increase lifespan and improve quality of life for patients, which will also benefit their children.
The challenges
From birth, Claudia was familiar with my coughing, the noise of my aerosol medications, and my Vest percussion machine for chest physiotherapy. Throughout her school years, we navigated both scheduled and emergent inpatient hospitalizations. At home, between normal parenting duties, she saw me pushing poles holding bags of intravenous antibiotics around the house to fight the persistent germs in my airways.
During her college years, my lung function decline ended my full-time nursing career, exchanging it with full-time oxygen dependency. I spent a month in the intensive care unit for an intestinal blockage that required surgery, missing her bachelor’s degree graduation ceremony. Shortly after that, I was listed for a double-lung transplant. Claudia’s master’s degree ceremony in 2020 was canceled due to the pandemic. Later that year I received the call for new lungs.
Anxiety affected both of us as my disease progressed. We’re now learning to navigate post-transplant life with all of its nuisances and complications.
None of her peers went through these experiences. While she had a great group of friends, no one else could truly relate to her feelings and fears. CF can disrupt life at a moment’s notice, leading to isolation, anxiety, and depression. This not only affects patients, but also our children. As a parent, I want to care for and protect my child, but it’s impossible to protect her from the reality of CF.
The blessings
My grandmother, my mom, Claudia, and I have always been extremely close. These four generations of strong, supportive women have done a lot together. My mom was there to care for Claudia each time my CF required hospitalization. My daughter and I never felt alone thanks to these special bonds and positive role models.
As Claudia made good friends at elementary school, I slowly opened up to their parents about my CF. These wonderful families formed our support group, which only grew from there. They showed up for us during my CF exacerbations, helping Claudia stick to her school and extracurricular schedule with as few interruptions as possible. To this day, those families remain cherished friends.
For Claudia and me, one of the greatest blessings of this CF journey has been the strengthening of our faith. By sharing my faith, I felt I was giving her something she could always lean on, no matter what happened to me. Because of my faith, I’ve never felt alone in this fight, and I hope the same for her.
Claudia and I have learned to lean on laughter. We’ve had enough serious experiences with CF that we take every opportunity to enjoy the moment. Laughter brings us balance, and boy, have we had some amazing laughs. I treasure those moments when my disease is far from her mind.
We don’t take time together for granted, hugging each other tight every time we see each other and saying “I love you” sincerely at the end of every phone call. We remain positive and live in the moment with gratitude and hope.
Every January feels like a milestone for me. Being Claudia’s mom is my favorite thing in this life, and every year that we defy the odds feels like I’ve won the lottery. This year is extra special, though, as she is engaged and I will be the mother of the bride this fall. Talk about miracles!
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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