Rewriting the Narrative and Remembering What We've Gained

With a zero second commute time from my kitchen to my new work-from-home dining room, time should be in abundance. Yet the minutes have been filled to the brim with laughter and laps around the house as my daughters chase their little brother, who is now convinced that he is a reindeer.  

Today I came home from school where I can sequester myself in the rebranded in-school suspension room I like to call the InSpiration Station, only to realize that Jordan has a clinic again - his quarterly check-up at Lutheran General Hospital. This visit will be the second visit that I cannot attend and mark approximately nine months since the first shutdown and the last time Josh and I were both able to attend his clinic on March 12th. This regularly scheduled visit had become a joyful ritual for our family in which the children would find the indoor train upon exiting the children's hospital as I reviewed the dozen or so questions about his growth, enzyme dosage, and treatment times in my head. 

Most people would not say that they find joy in frequenting a hospital. Still, my family has found great solace in the incredible care that Jordan receives and the habits that have continued to allow him to thrive despite the challenges that are sure to catch up to him one of these days. The more I learn about Cystic Fibrosis, the more my faith is strengthened - not because I believe that everything happens for a reason. I understand why people casually use this phrase to show empathy or diminish the pain of difficult situations, but I do not agree with its sentiments. There is no reason for illness and suffering. Instead, my faith is strengthened because I am able to witness incredible people making reason out of the obstacles placed before them. I am able to witness the positivity in people and the drive to make medical advancements that improve the quality of life for countless people. 

When Jordan was diagnosed in the fall of 2017, our favorite nurse grabbed my hand and told me that CF people shine. People with Cystic Fibrosis possess a unique quality about them that cannot be explained by science, although perhaps there is a genetic mutation that has yet to be discovered for cuteness. When all of my worst fears as a parent seemed to become our reality, Jordan's care team was able to help me reframe my mindset and stop focusing on what he lost the day he was diagnosed and start to celebrate what he had gained. As a family, the diagnosis of this chronic and often terminal illness gave us a deeper sense of appreciation for every moment and the understanding of how to continue to create meaning in our everyday lives. 

As Jordan continues to grow, I am in awe of this silly little boy who laughs at everything and is unaware that he has spent over 30% of his life in quarantine. We started quarantining Jordan in January of last year because of a particularly rough flu season that seemed to be circulating in our community. A common cold had previously led to a bowel obstruction that landed him an overnight stay in the hospital. While we remain optimistic and want our son to experience every aspect of life to the fullest, we have to social distance during times of the year when people are sick. Cautiously we have to survey our family and friends about colds or any sign of illness before we attend playdates and family functions. These practices are part of life for our family. 

Enter the pandemic of 2020 - a time in which everyone is told to social distance and avoid any type of exposure to illness. Welcome to the life of a person with Cystic Fibrosis world. The idea of wearing a mask in a crowded space or avoiding public places during flu season seems foreign to most but have been constant thoughts and precautions we have taken since Jordan’s birth. 

After Jordan's initial diagnosis, I remained paralyzed on my couch with fear. I didn't sleep, I didn't eat, and most importantly, I didn't live my life. I allowed myself time to grieve for the boy I thought Jordan was and the life I thought he'd have, and then I began to imagine the beautiful person he'd become.  While I still jump when I hear a cough and worry about his digestive health daily, I am not consumed by his illness. When I need to be anxious, I am, and then I move forward. With the coronavirus looming over us all, we, unfortunately, have to be hard to lockdown as a family. We don't go to restaurants, we barely go to stores, and we don't see our loved ones in person. Bringing COVID-19 to Jordan would surely result in a hospital stay and would most likely decimate his organs, the organs that we work so hard to keep functioning properly on a daily basis. His body reacts in extremes to any illness, and the consequences would most likely be more frightening than I want to acknowledge. Despite what we are missing, however, I do not believe my family is losing anything (Sans seeing and hugging our loved ones in person, but technology and creativity have made that situation better). 

While quarantine fatigue can be overwhelming and every day seems stuck on repeat, I refuse to allow myself to perpetuate a narrative of loss. My son has friends, he loves everyone he (digitally) meets, his vocabulary is more developed than his sisters were at that age, and he is constantly running, playing, and laughing. Lately, he thinks he's a reindeer and spends a great deal of time growling, but I am told that is "normal" behavior for a three-year-old boy. 

As a society, comments have been made about the lost generation that the coronavirus is creating, but I challenge us all to rewrite the narrative. When we tell people they are lost, we permit them to disengage and to become paralyzed by the list of what they are missing. Our children look to us to understand how to cope with life's joys and hardships. We should always acknowledge and embrace our feelings - especially feelings of sadness and loss, but we cannot allow ourselves to become consumed by them. Instead of focusing on what we've lost, we should discover and celebrate what we have gained. Reframing the narrative does not deny our pain and our struggles but rather allows us to move forward - stronger - with them.

My mission as a mother is to ensure that my three beautiful humans have equally beautiful lives. While Jordan's journey is one that I did not expect, his life will be full. Someday, I'll release him from his bubble wrap, and when that happens - look out world.

On this giving Tuesday, if you're looking for a cause to donate to, check out Jordan's (and my) Great Strides Page. You can donate to the Cystic Fibrosis Foundation, which has directly funded and researched several great advancements in treating and one day potentially curing Cystic Fibrosis. Because of medicine like Trikafta, there is more hope than ever. Want to read more about Jordan's journey, check out these past posts.