There is no greater fear for a parent than the inability to protect our children from pain and suffering. A few days after our only child, Zach, was born, those fears were realized when we received the unsettling news that Zach was born with cystic fibrosis. Those first few weeks were agonizing as we were paralyzed with fear regarding our family's future. We assumed each day would get progressively worse as the disease ravaged our son's body and consumed our souls. However, that initial visceral reaction was misguided. What we found was the disease just became another part of our family and we lost ourselves in Zach. His milestones, personality, and laughter were infectious and, as a result, we thrived.
Six years later, we are now confronted with new fears in the face of a relentless virus, which targets those most vulnerable -- like all of those who battle CF. The human mind is reactionary and tends to fall into bad habits during times of excessive stress. I've been on an emotional roller coaster ever since we first pulled Zach out of school on March fifth. On that day, we received communication from the school district that students and teachers had come in contact with someone who had tested positive with the novel coronavirus (the virus that causes COVID-19) and, a week later, our school district was shut down indefinitely. Complicating matters is the economic uncertainty and uncompromising workload thrust upon me over the past few months.
As we adjusted to our new normal, it was critical that Zach understood the severity of COVID-19 to establish necessary safeguards to protect him from the virus.
Telling a 6-year-old that he can no longer play with friends, attend school, or do all of the fun activities he was accustomed to felt like a daunting task. We found that being honest and transparent with the situation created a sense of calm and understanding about how we could best protect ourselves.
One benefit of living with CF is that all of the suggested precautions of handwashing, sanitizing everything, and physical distancing is how we generally live our lives every day. As a result, there wasn't much of a learning curve -- just an adaptation on assimilating our behaviors with society as a whole. Even at such a young age, Zach understands -- better than most adults -- what he needs to do to protect himself against COVID-19.
Through it all, the isolation, the global health crisis, and resulting economic fallout, there has been one constant, which has helped soothe my psyche and provided much needed stability -- my family.
More specifically, what has kept me grounded through one of the most demanding times in my life has been my son's innocence and perspective on the world. There have been so many moments of gratitude that I've been able to share with him while the world outside is in chaos. I've enjoyed teaching him math each day on our chalkboard wall between calls with clients. I've appreciated eating three meals a day with him and laughing at his silliness. Each week, I bring our movie screen into the living room and we watch family memories from a projector. It has been uplifting to see Zach's curiosity as he watches himself; moments that were etched in my memory yet are new to him. My days have been filled with moments like these: LEGO®, tag, yoga, experiments, cooking, and making home movies and memories of our own, which I will always cherish. My hope is that, when time passes and I recall these trying days, what will matter most is the love my family was able to share with each other.
In a normal CF environment, those with CF and their caregivers spend an inordinate amount of time on medications, therapies, and procedures to stay healthy. Due to COVID-19, CF caregivers are now also adding homeschooling, adjusting to new work environments, and struggling to procure basic groceries to their everyday regimens. To best navigate these unique times, we have lowered expectations of ourselves and have just captured some of the positives that come with being locked in our home with our family for months. This, too, will pass, as every storm runs out of rain.
As a society -- more specifically, the CF community -- we will learn from this crisis and grow in ways we can't yet fathom.
Sometimes it's as simple as being a better father and reconnecting with the imagination of a child. At least that's been my experience the past few months, and I know we will help each other through these uncertain times because that's what families do.
Interested in sharing your story? The CF Community Blog wants to hear from you.