How My Family Survived Months of Illness, Worry, and Boredom

Since Feb. 26, many Christians around the world, including me, have been following the 40 days of Lent. It is a time of fasting and repentance to prepare for Easter.

How we practice Lent is a personal choice. Some give up tempting treats or make other positive changes to their daily routines. It’s also a time to reflect on aspects of our lives that need improvement. In years past, this often inspired a purging and deep cleaning of homes, taking better care of our health, and making a greater effort to spend quality time with family.

This year, our Lenten traditions became less of a choice and more of an enforced lifestyle due to COVID-19. We are still looking forward to the joy of Easter Sunday, but we must accept that the sacrifices we have been making will continue past Holy Week.

Whether or not you practice a Christian faith, we are all adapting to a different way of life and a new season of unknowns. It’s not my intention to preach to the choir or convert anyone, but rather use my experiences as a Catholic and a caregiver to inspire hope.

In 2014, my family survived our own private version of an extended Lenten season. On Good Friday of that year, my son Cullen participated in his eighth-grade Passion Play depicting the trial, suffering, and death of Jesus. He was extremely sick with pulmonary hypertension and heart failure and was listed for a heart and double-lung transplant.

An expression notes that in life, “we all have a cross to bear.” For some, that cross is a little more visible than for others. In the pictures of Cullen on that Good Friday, he looks gaunt and tired. If you look closely, you can see a hump protruding from his back. That’s because under his robe he was carrying a backpack containing two infusion pumps — one to treat PH and the other for heart failure.

Cullen during the Good Friday Passion Play in 2014. (Courtesy of Colleen Steele)

Easter was celebrated with joy in our hearts but worry on our minds. We faced so many scary unknowns. How much sicker would Cullen get, and how much longer would he have to wait for transplant? Would the call come in time to save his life?

The answer is yes, it did, but not until four months later. During that waiting period, my family was living a life very different from the norm.

At the forefront of our thoughts was Cullen’s health, and protecting it was our priority. We took extra precautions against germs and requested that others do the same. If they weren’t willing to comply, then they couldn’t be around him, and if they were sick themselves, then definitely not.

Our family couldn’t travel, and by that I mean we couldn’t stray far from home. We were tethered to our phones and prepared to respond and react the moment Cullen received his call for transplant. This meant declining invitations to fun events and battling boredom while at home or in the hospital.

A lot of time was spent in front of glowing monitors, phones, and TV screens, but we also enjoyed many family game nights. Monopoly, card games, chess, and bingo were favorites. Adding to the excitement, winners could select from a well-stocked basket of candy and other small prizes. Dad kept things interesting by researching and ordering board games that we had never heard of or played. This helped kill time, because a lot of it was spent reading instructions and learning rules.

We also made family meals more enjoyable by inviting the boys to help in the kitchen. With careful supervision, they enjoyed learning how to chop, mix, fry, and bake. After paging through recipes, Cullen selected chicken souvlaki as his first dinner to prepare on his own. He was so proud of how delicious it turned out and that he included onions, an ingredient he would normally refuse to eat.

Were laughter and happy memories always made? No, of course not! Trust me, we frequently got on each other’s nerves. We had disagreements, battles over chores and homework, and days when we each needed our alone time. We learned a lot about respect and forgiveness during those days.

Fast-forward to Easter 2015, when Cullen was eight months post-transplant. A picture shows him happy, healthy, and outside with friends and his dog Mellow, but still tethered to his cellphone. At least now it was for pleasure and not a necessity.

Easter 2015. (Courtesy of Colleen Steele)

My family persevered through the extended Lenten season of 2014 in much the same way we are doing it in 2020.

Don’t lose hope or travel this journey alone. PHamily is waiting for you in the Pulmonary Hypertension News Forums. Join and help each other pass the time.

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Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.