My Son Is Enjoying the Thrill of Freedom This Holiday Season

Slowly, you begin to ascend. At first, you can’t even see the apex of your destination, so already you’re feeling anxious. As the climb steepens, you feel ambivalent, wanting to brave it out but also wondering if it’s too late to get off this ride.

At the top, your stomach drops, your heart pounds, your fists are glued to the safety bar, your eyes widen, and you whisper a final prayer, “Oh God, help me!”

It takes a moment, but elation takes over as you give in to the fall. You loosen your grip on the bar, and your arms spring up in surrender. You smile at the next climb approaching because you know there will be joy after the fear.

Comparing life to a roller coaster is probably an overused analogy, but what better way is there to describe what it’s like to release every care in the world and enjoy the thrill of a single moment?

I’m talking about big, joyous life events after overcoming tremendous physical, emotional, and mental challenges.

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In 2008, pulmonary hypertension (PH) forced my son Cullen onto a ride that kept climbing for six years. When the ride finally reached its peak, it got stuck. The only way down was death or rescue.

Cullen was saved by a heart and double-lung transplant, which took him and our family on a scary but exciting descent from disaster.

After Cullen’s transplant, the surgeon updated me by saying, “Surgery went well, with no complications, and the new heart and lungs are functioning beautifully.” I prayed Cullen could stay on this new ride for a lifetime.

Post-transplant adjustments

His first year after transplant we were a bit nervous because various complications added twists and turns to the journey. He braved it like a champ and was eventually well enough to roll into high school and start his freshman year.

Watching him head out the door for his first day of classes was wonderful. It felt like the rush of a roller-coaster ride, with arms not up in surrender, but rather wide open, as if to hug someone.

Unfortunately, because of a battle with organ rejection and kidney disease, the ride stalled, and Cullen completed high school with virtual learning.

Recovering from the transplant left Cullen a year behind his peers. But all that he had been through made graduation day even more moving because it meant graduating with his younger brother, Aidan. Because of PH and transplant, both Cullen and Aidan faced a lot of struggles, but they finally reached this special life event and could celebrate all they had overcome and achieved together.

By graduation, Cullen’s health had greatly improved. He was focused on the next exciting thing — attending college.

Recently, Cullen went from happily attending classes in person to virtual learning once again, due to the COVID-19 pandemic. If anyone has the patience to wait out a pandemic, it’s Cullen, who turned 23 in November, eight years after his transplant. He is in good health. In the past few years, he has poured himself into his studies, earned straight A’s, and hopes he can soon transfer to a university.

That’s a ride he will look forward to later, but right now, he is on one called “Freedom,” which he has never experienced previously.

Cullen prepares to board his first solo flight. (Photo by Colleen Steele)

A new first

Aidan accepted a job in Louisiana, where he moved last summer. On Dec. 6, Cullen boarded a flight to stay with his brother until Jan. 10. It was Cullen’s first time flying alone, and his first time being solely responsible for his healthcare needs. Most importantly, it was his first taste of freedom.

My mom asked if I was upset that my sons wouldn’t be home for the holidays. My response was, “I can’t complain about answered prayers.” All I have ever wanted is for Cullen and Aidan to be healthy, to look out for each other, and to be good friends.

The photo above doesn’t merely show Cullen heading through airport security, it represents 23 years of answered prayers.

His dad, Brian, reflected on the photo by saying, “It reminds me of the photo of Cullen walking across the parking lot on his first day of school.”

After talking to his sons on the phone when Cullen arrived in Louisiana, Brian observed, “I don’t think I’ve ever seen them so excited to see each other.”

PH and transplant can be scary rides, but whichever one you are on, I hope each descent is as thrilling and memorable as the ones Cullen and my family have experienced.

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, and are intended to spark discussion about issues pertaining to pulmonary hypertension.