The Community I Never Wanted to Join

May is cystic fibrosis awareness month, a month that is accompanied by a heavy heart and a subtle desire to hide myself away. This is my third May being a parent to a daughter with cystic fibrosis and each year I’ve thought that I’ll do my part to raise awareness and funds for the CF Foundation, but May’s have come and gone with little to no promotion. 

I was generously gifted the ability to silently wait out the month of May for the past few years, but this year was a bit different. An aunt to a child with CF gave a talk at a local church and the month of awareness was suddenly exposed. She described the disease and was requesting supporting for the local CF walk that took place this past Saturday. I was instantly bombarded with supportive and loving inquiries from community members asking if they could walk with us to support June, my Junie Bear. But we weren’t walking. I couldn’t bring myself to sign up. 

I received the Facebook invite to join the walk and I clicked “going” as a way to stay updated, but wasn’t convinced that I could find the courage to participate. Every time I thought about walking I felt overrun with sadness, anger, and a solemn brokenness that I have learned to stuff deep within. The idea of exposing myself and my family at the CF walk was a reminder that I’m now part of a community that I never asked to join.

Before I go on, I feel compelled to explain that my discontent doesn’t stem from shame or regret. You will probably never know the depth of pride I feel when I watch my little girl developing the strength and habits that will propel her into her future. No, this is a feeling of fear and anger, two emotions that cause paralysis when it comes to openly claiming her condition at an event organized for individuals like her. I would prefer to keep these emotions tucked away where they can’t force the tears that I’ve cried so many times only to surrender to a truth with no cure. Some things feel better left undisturbed. 

CF is a homozygous recessive disease meaning that both parents must carry the genetic mutation, pass along both of these mutations to their child, and that child will then suffer from a faulty CFTR protein. As carriers, my husband and I have a 25% chance of having a child with CF, a reality that neither of us were privy to when we decided to have children. Our first born son beat the odds, but our daughter was not so fortunate. Her faulty CFTR proteins cause impaired salt transport across cell membranes, which results in abnormally thick and sticky mucuses throughout the body. CF primarily affects the lungs, pancreas, liver, and digestive tract, and is considered a multi-system disease. 

The thick mucus in her lungs creates the perfect breeding ground for harmful bacteria. The normal function of mucus in the lungs is to move dead cells, bacteria, and spent DNA out of the lungs, but you can imagine that the lungs instead become a perfect petri dish if all of these substances are left to sit in a warm, moist, and oxygenated environment. The mucus that would serve to move things OUT becomes the perfect place to trap things IN. Repeated infections – ones that wouldn’t even be problematic for you or I – cause lung damage, decreased lung function overtime, and eventual death from lung disease. What I’ve described is the most common scenario, but some people with CF have less lung involvement and more involvement from other organs like the pancreas or liver, and instead suffer from malnutrition or liver disease. I simply cannot express the diverse and horrific consequences of having CF through a blog post. It’s something that only others who are part of the CF community would ever even begin to understand, but you’ll just have to believe me when I say that it can be a devastating disease.  

The median life expectancy for someone with CF is around 30 years of age. This number is a moving target and doesn’t necessarily project any truths for my nearly 3 year old daughter since treatments, therapies, and interventions are rapidly changing, but I will say that it’s a heart breaking number to live with. All of the options for improved quality of life and longevity require large investments of time and lots of hard work on the part of the patient and parents. Yes, there are “pills” becoming available, but nothing that has replaced all of the hard work that goes into keeping my daughter’s lungs clear. Even with all of this hard work we still see the effects of the disease. 

This past winter was especially hard for us. June had infection after infection after infection and was on antibiotics (IV and oral) for what felt like months. I couldn’t wait for the brighter, healthier days of spring, but now her seasonal allergies have already resulted in two rounds of oral antibiotics just 3 weeks apart. I was never one to support pharmaceuticals unless necessary, but there is simply no way around it with June. I used to worry that she’d become resistant to antibiotics and that her digestive tract would be wrecked by the time she was 20 years old, but now I realize that we’ll cross that bridge when we get there. The more urgent issue is keeping her lungs healthy enough that she even gets to that point. The balance feels impossible, but what choice do I have other than to react and respond to each individual issue as it presents itself? My motto has become “we’ll cross that bridge when we get there.”

It took a few years for me to accept the fact that we’ll likely spend a lifetime correcting and adjusting whatever symptoms present themselves whether they be disease-related or a medication side effect. My daughter has regular clinic visits to check the quality of her lungs, optometrist visits to verify that one of her medications isn’t giving her cataracts, and varying other appointments scattered in between. I still have no idea what to do most of the time when it comes to treatments, but I’ll say that joining the online CF community has been a harsh reality, one that has heavily motivated me to move forward with as many interventions as possible. I “love” posts where moms are sharing photos of their teens with CF who are alive and healthy enough to attend high school proms. I’m thrilled to see their children thriving, yet saddened that this is even a thing, that we’re congratulating each other for a child thriving at 17 years of age. 

In the few short years that I’ve been part of the CF community I’ve witnessed a handful of strangers pass away. Some were adults, others were children. I’m observing other individuals teeter on the edge of disaster. The community pours their support towards these families, and I do my best to do the same, but I sometimes have to shamefully look away. I’m not always strong enough to face the truths that are staring me in the face. I have grown to love a number of individuals in this community, but I feel that I willfully wedge distance between myself and them at times simply because I’m afraid that I’ll collapse under the burden of loss that people with CF face. When I think about the CF adults who have watched friend after friend pass away while they continue to bear their burden, I can’t help but think about the courage, bravery, and pain that these individuals have been forced to carry, and how their strength is a true testament to what the human heart is capable of. 

When I say that I never wanted to be part of the CF community I’m saying that I never wanted this for my child. I never wanted to participate in a walk to support her disease. But here I am, immersed in a community of strength, resilience, hope, pain, and suffering. I once wrote about the gifts that come from the darkness and I whole heartedly believe these gifts exist, so I’ll continue to cling to the hope that faith, dedication, and community will bring joy to our lives in unexpected ways. But I also know that deep inside I’ll forever bear a sharp wound and that my daughter will likely bear the same. We carry with us the burden of fear and all of its unanticipated and unexpected tragedies. And it’s this fear that makes me long for a different community, one with a few less broken hearts. 

To show your support for June and others with CF, please head over to a dear friend’s fundraising page who will be walking in June’s honor on May 27th. She’s helping me carry a burden that feels a bit too heavy at times and for that I’m extremely grateful.