Exposing the Outside World to Our Family’s Cystic Fibrosis Journey
Sharing what it's like to raise children with cystic fibrosis is not easy
“Intense.” That was the word our friend used to describe our daughter’s daily cystic fibrosis (CF) care routine.
We were on the last day of a weeklong group vacation, spending every waking moment together. Prior to this trip, the only people who were familiar with the intricacies of our daughter’s daily regimen had been our kids’ grandparents. Friends may have caught a glimpse of us administering enzymes at a party or watched a video on my social media of breathing treatments. But these moments in time don’t come close to what living with CF is really like.
Still, our friend’s answer caught me off guard, as I often forget how much CF affects our lives every day. The daily management of our daughter’s CF has become second nature to us. However, on day one of our group trip, it became obvious that it is foreign to those who have never experienced it.
A parent’s protective instincts
At first, it felt awkward performing our 3-year-old daughter Claire’s medical tasks in front of others. Sharing all of the intimate aspects of her care felt as if I were exposing her in some way. The nature of her disease causes me to be protective not just of her health, but also of the perception that others have of her. I never want people to look at my daughter as being the “sick kid.” I want people to look at her as the amazing little girl she is — to see beyond the disease she inherited.
But there is no hiding the inherent time commitment that CF imposes when sharing a space with others. CF takes a considerable amount of time away from daily life, even on vacation. According to a recent study published in the journal Therapeutic Advances in Respiratory Disease, children with CF spend an average of 75 minutes a day receiving homebound treatment. That does not include the time administering medications, preparing treatments, sterilization, and overall management of the daily routine. From an outsider’s perspective, it is undoubtedly overwhelming to witness, and even more so to become immersed in it.
We were fortunate that our friends quickly dove in to learn more and participate in our daughter’s care. Beach time was planned around treatment times. We had to pack enzymes along with floaties wherever we went. It wasn’t long before our friend reminded me that we needed applesauce for our morning trip. The team effort managing her care with friends made me feel supported in a way I hadn’t felt before.
A little understanding
Many days, I wish people outside our world could get a behind-the-scenes look at CF life. Very few people understand the inherent responsibility that comes with raising a child with CF and how it affects the family dynamic. Letting yourself be vulnerable with friends and family about your child’s condition can be scary. There is worry that your vulnerability may be met with judgment. The intrinsic complexity of CF can easily lead to feeling misunderstood.
Still, I know that one of the best things I can do for my daughter is to educate others. Taking the opportunity to expose our friends and family to what we experience is a huge step toward that. It also means that I must be willing to bring people into our world on a deeper level. Ultimately, this could enable them to support us in more meaningful ways.
I took a valuable lesson away from this trip: Opening our world can feel strange, but it can also be equally rewarding.
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.