Parenting a child with chronic illness brings hardship, wisdom

One challenge is helping others understand the nature of invisible illness

by Jennifer Chamberlain | February 28, 2023

The ski instructor looked at me puzzled and took another look at our daughter. “What does she have again? She looks fine.” This is a common response when I first tell people Claire has cystic fibrosis (CF). Most people just see a vibrant 4-year-old when they meet her. What they don’t see is how complex CF is and the unique challenges it creates for our family.

Having an invisible disease can be both a blessing and a curse in that way. One of my primary goals as a caregiver is to ensure that those around Claire are educated about why we have to care for her the way we do. This effort is often complicated because our daughter doesn’t outwardly manifest any signs of her disease.

CF caregivers can be perceived as being overprotective or overdramatic about their child’s condition. Because of this, it can be difficult to explain to others the seriousness of her condition and how it shapes the way we live our lives.

The endless balancing act

All parents must consider risks when raising a child. But unlike typical parenting, most CF parenting choices require intense risk analysis. It’s a common struggle among CF caregivers to balance the instinct to protect their child while letting them live a full life.

Many times, I feel those around us don’t understand the level of scrutiny we must use when analyzing the most mundane of things, such as sending our child to school. We have to place boundaries that may seem strange or disproportionate to others. But those outside our household aren’t privy to the knowledge that guides our decisions. I only hope that others respect that this disease is our reality, and we’re handling it the best way we can.

And unlike parents of kids without a rare disease, we have medical caregiving tasks on top of regular parenting. We have to handle the bulk of CF caregiving on our own because we know its intricacies.

But we’re more than CF parents. We have careers and hobbies just like everyone else. When we do find time for the other facets of our lives, we can only leave Claire with someone who is educated and competent in her care routine and will follow the precautions we observe. That limits our circle of caregivers tremendously. When I do have competent child care, I need to leave detailed notes on her medication administration and breathing treatment schedules.

The financial costs of CF

With limited child care options, many CF parents face the difficult choice of working to provide financial support or staying home to care for their child with CF.

While our daughter was still in the neonatal intensive care unit, I made the difficult decision to go back to work only part time. I knew this would drastically reduce our family income, but I felt like I had little choice with the intensive care she needed. With her diagnosis also came costly medications and doctor appointments. We had to adjust as a family to the financial strain CF imposes in an instant.

Our family makes financial sacrifices to ensure that our daughter has every opportunity that medicine and life affords her. It’s not easy knowing that we have to spend such large amounts of money just to keep our child healthy. But I know that many CF families are in the same position where financial costs weigh heavily on care decisions. Our lifestyle is definitely different as a result.

A new way of life

Our entire world looks different in many ways after having our daughter. Today, I don’t think twice about things that seemed like a big deal five years ago. In contrast, things I never thought about are now in the forefront of my mind. Our reality has shifted to accommodate what CF brings into our lives.

CF parents aren’t given a manual or hard set of rules to follow. Instead, each CF family forges their own path to find a level of comfort as they navigate different surroundings, experiences, and even people, all while hoping for the best medical outcome.

Some days, I think I was destined to be a CF mom. Other days, I ask the universe why I was given this role. I’ve never been challenged more than in this role, but it’s given me a mindset and perspective I never would’ve had without it.

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.