I will never forget the first time a physician told us our child might not make it through the night. It wouldn’t be the last time a healthcare expert told us that. Preston is the second oldest of our five children. When he was young, he was diagnosed with a kidney disorder that required ongoing treatments. His frail, little body would often balloon in unusual shapes as he retained fluid, and a common cold could send us racing to the hospital.
With faith comes unexpected blessings
As Preston grew older, we often found ourselves in the hospital as his body and mighty spirit worked together to battle his medical condition. He knew the hospital room with its never-ending noise better than his own comfortable bed. Track marks, telling signs of yet another hard-fought battle, covered his arms from the regular IVs and blood draws. Even at a young age, Preston surpassed most adults in his capacity to show empathy toward those struggling.
Even at a young age, Preston surpassed most adults in his capacity to show empathy toward those struggling.
During his extended-stay visit, patients in his unit were discharged home. Preston could hear them excitedly packing up their items on the opposite side of the thin, blue hospital curtain dividing our cramped living space.
The first few children to leave brought hope Preston would follow soon, but he didn’t. A day stretched into a week, and he sunk into a deep sadness. When Preston watched another roommate celebrate their departure, he eventually turned to me, with tears flooding his eyes, and said, “Daddy, can I please go home? Please, Daddy, let’s just go home. Please?”
I held my son that day for what felt like hours and let the comfort of my arms provide the love my words couldn’t. His face, once so optimistic, lost faith, and he no longer showed interest when the nurse entered the room to update us. We didn’t go home then, but eventually, he improved enough to joyfully plan his return to our family.
With obedience comes sacrifice
Preston was determined to prove the doctors wrong about his limitations. As a family, we knew we needed to make lifestyle changes to protect him. These changes came with some sacrifices, as we were relatively healthy and comfortably social. We have friends. We are actively involved in our faith. We enjoy traveling. At the time, we even had plans to start our own company.
However, in an effort to remain in control of our responsibilities and involved in our communities, we all make poor choices, especially when faced with a contagious illness. How many times have we found ourselves sick at church, work, a restaurant, or on a flight for a much-needed vacation? How often did we send our children to school ill because keeping them home would disrupt our schedules?
As a former executive in the healthcare field, I was charged with caring for the aging population in skilled nursing facilities and continuing care retirement communities.
Eventually, I co-founded a large post-acute, in-home medical company, providing home health, hospice, and private duty services in various states.
Some of my friends and colleagues in the healthcare industry believe restrictions from the government in response to the novel coronavirus are an over-exaggeration of what is needed, pointing to other diseases that kill a proportionately higher number of patients.
Others argue they don’t go far enough, and they feel frustrated at the lack of compliance they see or read about via media outlets.
Most agree our healthcare system is overwhelmed by COVID-19 and needs support. As we face a contagious disease of global proportions, the potential, life-altering risks seem almost too great to fully comprehend.
I understand. No one really wants to go into quarantine. Our family’s options were always limited, as our life revolved around a deep understanding of what it means to have an immunosuppressed child.
With unselfish love comes reward
This isn’t the first time our family had to self-isolate and practice social distancing. Spending five months with limited contact outside of our home was the longest stretch. It was so long, in fact, that our children named our property “the compound,” although that’s not really something you brag about to anyone outside of your family or close friends.
We weren’t doomsday preppers. Instead, our focus was on the health of our family. And if that meant eating basic food from our storage or going without modern conveniences, we’d do it.
It’s hard to change our habits or behavior unless we are compelled to do so. As we learned this, we realized we couldn’t force others to adopt the same vigilant practices we had implemented when they had no reference point.
It's hard to change our habits or behavior unless we are compelled to do so. As we learned this, we realized we couldn't force others to adopt the same vigilant practices we had implemented when they had no reference point.
Preston was preparing for his mission leading up to the changes COVID-19 introduced. He knew immediately this would impact missionaries and likely stall the remaining requirements necessary for his pending missionary application.
On day two of the state’s mandate to stay home, Preston approached his mom with the same look I remember from the hospital many years ago. “Mom,” he asked. “Can I die from this?”
“No. Well, yes,” she stammered. “But we need to keep you healthy and positive. We’ve had a lot of practice with this, and we’ll be okay.”
Is there really any other answer? I firmly believe that optimism overpowers realism.
With courage comes growth
In our home, we stand by the idea that positive affirmations can heal our minds and spirits first, with our bodies following. We also believe in times of crisis, good distractions and service prevail.
In our home, we stand by the idea that positive affirmations can heal our minds and spirits first, with our bodies following. We also believe in times of crisis, good distractions and service prevail.
And so, we did just that. We’ve spent our days giving back. We set up contests for family members and friends: Make a fort and win a prize. Sing a song or perform an original skit. Our phones have become tools for expressing love with regular texts and FaceTime with those who are alone.
Our social media accounts are blanketed with hope and positivity to counter the dismal daily updates of those affected around the globe. Where appropriate, we have sent cash to help those in need or been a sounding board for jobless individuals trying to find employment.
Board games, long-buried, have resurfaced. Neglected projects are completed. Homeschooling and telephonic music lessons with their instructors continue, as do in-home exercise programs. Days feel longer, and there are plenty of stir-crazed moments where you need time to regroup and laugh at the never-ending GIFs showing working parents forced to be home.
With optimism comes change
Ultimately, we discovered we can create a positive difference in our home by how we respond to a profound life event we will always remember but can’t control. When our children look back on 2020 and the COVID-19 impact, how will they remember it? How will you remember it?
Recently, our 10-year-old daughter overheard us discussing this topic and submitted a hand-written essay she prepared. A few of her comments illustrate how siblings of an immunosuppressed child see this pandemic:
“I don’t want to catch the virus. I don't want to give it to others, especially my family. My brother Preston can’t get sick. He could die if he did.
“We can’t go places anymore. Some families don't have a lot of food or money. We can’t get a lot of toilet paper. Now that’s a crappy problem.
“If I had a magic wand, I would kill the virus and heal those who have it. The virus has got to go!”
When I shared a portion of her thoughts to a larger audience via social media, the feedback was resoundingly positive: “How wonderful! She is what we need more of in the world.” Someone else said, “Her example is a big part of the cure – mutual mindfulness.”
With this understanding, think about someone you love more than anything else in this world. Visualize them holding your hand, giving you a hug, saying something encouraging or silly, and listening to you in time of need. It is likely we all have that image in our minds from the past or present. Now ask yourself, “Would you do anything to keep that person you love alive?”
It is times like this that our family expresses appreciation to all of you who willingly do your part to keep our son, your loved ones, and the loved ones of others, healthy. It begins by realizing we are interconnected and have the ability to overcome even the worst events in history, even if we don’t understand it.