We've Got CF Stories To Tell...

Life is always busy in January and February. Embracing and enjoying the frenzy that was the first two months of the year have left me with much to reflect on professionally and personally. 

Recently I have been grappling with my thoughts on an upcoming movie that has the CF community abuzz with conflicting emotions and perspectives. The movie and novel adaptation of this story both strive to highlight what life is like for people living with this disease. While my son is still too young to show many of the symptoms of CF, what his life will look like when he's grown is at the forefront of my mind. Will he struggle and suffer? Will he be able to manage his medications, treatments, and still lead a "normal" life? The answer to the latter question is a resounding yes. The medical breakthroughs and treatments being released as I type this post is astoundingly positive and has made the mantra "until it's done" more realistic than ever. The Cystic Fibrosis Foundation recently hosted a virtual conference called Research Con to provide even more insight into the current reality of this disease, provide information on best practices with daily health care and preventative measures, and also brought the community of doctors, patients, and loved ones together to take strides to better understand this rare and often misunderstood disease. What I have appreciated the most about this organization aside from self-funding treatments and research that have been life-giving and life-saving, is the mission to provide accurate and realistic information about what the disease is. The CF Foundation highlights how gene-expression and gene-mutations can uniquely manifest in each person living with this disease and focuses on helping people live a full and healthy life in spite of the devastation that this disease can cause on a person's body. 

The movie Five Feet Apart, which I do look forward to seeing, set to be released this week, showcases the life of young adults living with this life-threatening condition. My fear as a mother of a toddler who has CF is that while this is a narrative of some who have this disease, it is not my son's narrative. While I do believe this film was crafted with care and made with the intention to spotlight the disease while working toward finding a cure, I worry that it will create a false idea or understanding in the minds of the general public about what the disease is. I also have concerns that people I care about will see this film and leave with the impression that Jordan should be treated as though he were fragile and weak. The film will address with the reality of the daily challenges experienced as a result of the disease, which in far too many cases includes hospitalization and premature death. As a result, death and loss will play a prevalent role in how the characters' stories unfold. I do not, however, want my family to see this version of CF and think that Jordan is sicker than he is because of what they see in the film. The disease has changed, the treatments have improved exponentially, and I have reason to hope that the stories on the silver screen are not foretelling of Jordan's narrative. 

To say that I'm looking forward to ugly crying in a movie theater for two hours is not exactly the best way to describe my sentiments toward watching this movie. This film will trigger every fearful thought I have about my son, his disease, and his future. In spite of my own mixed emotions toward the subject, I do appreciate the intention behind it and the amplification of conversations around CF as a result of its release. I do not want the discussions to stop;  I also don't want people to see one story or one truth about this disease and think they know what life is like with CF based off of one perspective or version of the narrative. 

I am so grateful that this movie has set out to build empathy and understanding for the CF community. I ask that my loved ones remember to ask me about Jordan's condition and not make assumptions from a movie or even the real-life experiences of others. The research and treatments available to him may mean that he may not struggle in the ways that some have before him, but I cannot predict his future or anyone's future. Life is precious and unpredictable; I am grateful for the now. The reality of today is that he is a happy boy who loves to sing and create trouble. His smile and laughter are infectious. CF is just a part of Jordan's journey, and I will continue to hope for a happy ending for Jordan and all those who suffer from this disease.

We all have a story to tell, and if we take the time to listen to each other, embrace life's struggles and joys, and continue to dialogue with each other, we can work to help each other along the way. This movie was made to perpetuate a version of reality for some people with the disease. It is not necessarily everyone's reality, though. Please see this movie; start a dialogue around CF. Unless your Google search algorithm has been preconditioned to find information from the Cystic Fibrosis Foundation like mine has, do not make the mistake of Googling this disease as I have done in the past. Instead, ask me about Jordan, our Superman, our stinker; I am always happy to write you into his story.

Join our walk this year on June 2nd!!! We are looking for friends to walk with Team AJD!