Our son has Cystic Fibrosis

 

Our son Rowland has been diagnosed with Cystic Fibrosis. CF is a progressive genetic disease that affects the lungs, digestive system, and other parts of the body over time. We have our first CF clinic appointment tomorrow and I am sitting here trying to process what this appointment means and how it is the start of a journey I didn’t know I would be a part of. This is my first time being a mom and I knew that came with new responsibilities, challenges, and joyful moments. I knew that because I have a family history of anxiety and depression that I should be on the look out for signs of postpartum depression. I knew that breastfeeding might be difficult and that I wouldn’t sleep. I knew that I would feel overjoyed when my baby smiled at me for the first time. I didn’t know that some babies do not like to eat. I didn’t know I could love my baby so much that when receiving a diagnosis like Cystic Fibrosis, filled with so much uncertainty, that I could feel my heart sinking to my stomach in fear that my son could experience physical pain and perhaps even a shortened life span. How badly I want to protect him from any pain or fear he may experience because of this diagnosis. And I certainly didn’t know that our son would have Cystic Fibrosis. After all, both my carrier screening I did when I was pregnant (both parents have to be carriers of the CF gene) and Rowland’s newborn screening came back negative. So how in the heck could we be one of those rare cases that had two negative screenings yet a CF diagnosis (confirmed by something called a sweat test) for our son?

The day after we learned of his diagnosis (which happened to be our five year anniversary weekend—oh the timing) I felt like a stack of bricks was weighing on my body—I had yearned for normalcy as many of us have since the beginning of the pandemic in March 2020. I have been open on social media about anxiety I experience and the pandemic highlighted my anxiety about my health and the health of those I care about. I have been extra cautious through this pandemic and was finally returning to normalcy and in what felt like a blink of an eye COVID cases begin to surge in our area and we received a diagnosis that is riddled with health uncertainties and unknowns. This diagnosis coupled with a freaking pandemic is truly one of my worst fears and yet here we are living in it. And I know sometimes it is difficult to make sense of but I believe you can feel multiple contradicting emotions at the same time because us humans are complex. So while I sometimes feel sadness, and fear, I also feel relief and hope too. I feel relief that there are answers to his weight gain issues. And I feel hope that Rowland can and will live a life similar to people who are not living with CF.

 Since learning about his diagnosis I have gone down the rabbit hole of research. I am not sure if this is an effective coping strategy or perhaps my way of spiraling but I went straight to the research papers, noted when they were written, and learned about why those living with CF feel so hopeful. Preventative treatments have come a long way to help those living with CF remain healthy and there are new drugs called modulators that many of those living with CF can take that have improved outcomes for their health. (Unfortunately not everyone with CF can take these modulators as it is dependent on the mutation. We do not know what Rowland’s mutations are yet.) I have even heard them called a miracle drug. To see how modern science and research has advanced CF treatments gives me so much hope. There is also the Cystic Fibrosis Foundation that provides information for people who are new to this like me and fundraises to advance scientific research that has had a far reaching impact and will continue to have a far reaching impact on those living with CF. This also gives me hope. I do not share about my faith in God very often on social media but I do consider myself a Christian and I do have faith in God. My faith has gotten me through these past couple of weeks. It sounds bizarre but I feel a sense of peace and purpose. I never thought this would be our families journey and yet I feel like God has somehow prepared me for this moment in so many unique ways. I have always gravitated toward the unique and challenging experiences—I mean I wanted to live and travel in a VW bus and while that may no longer be realistic perhaps we can one day do some RV traveling. Back to my point-- I guess my point is that our family was chosen to navigate this unique and challenging experience and while I may not have chosen this for our family, I am ready to embrace it with all its ups and downs and unknowns with the hope that because of medical advancements Rowland’s life expectancy and quality of life will be similar to someone who is not living with CF.

I pretty much have always been an oversharer but I was hesitant to share this information over social media for a few reasons—fear of judgment for sharing something so personal about my son, fear of taking away my son’s agency to share his story in the future (something that will be reevaluated when Rowland is old enough to understand and can make decisions for himself) and fear of making people uncomfortable. After thinking about it however and talking it over with my husband Bryan, we believe the benefits of sharing our journey outweigh the risks. My reasons for writing are four-fold:

1.     If we can make an impact in some small way, we would like to. Having a voice will allow me and Bry to do our part in bringing awareness and fundraising for the Cystic Fibrosis Foundation to advance medical research and perhaps one day find a cure for Rowland and others living with CF.

2.     Sharing this journey from a parent perspective invites connection. I would love to connect with other parents for support. And perhaps if someone stumbles upon this blog and the unique way Rowland was diagnosed (after having a negative carrier screening myself and Rowland having a negative newborn screening) they may not feel so alone in their own parenting journey.

3.     Writing about this is a coping mechanism for me. I feel relief writing my thoughts down.

4.     For those who share the same faith we do, we believe in the power of prayer. This way we can continue to ask for prayer through this platform as we embark on this journey.

Eventually I would like to share what and how we were brought to this diagnosis but will do so another time.

For more information on what Cystic Fibrosis is you can check out the Cystic Fibrosis foundation at Home | Cystic Fibrosis Foundation (cff.org). 

Cambrey