Living Life Focused on Quality, Not Quantity

Living Life Focused on Quality, Not Quantity

Parents sometimes view birthdays, milestones, and even achievements as bittersweet. Witnessing a child mature and grow brings joy, but sentimentality tends to mix with the happiness. Many a parent has wished life would slow down so that they could enjoy the childhood of their offspring just a little longer.

I recall celebrating the first birthdays of my sons and thinking, “Oh, that year went by way too fast!” Before I knew it, they were walking, talking, and ready to take their first big-boy steps into preschool. The additional candle on their birthday cakes each year was exciting, but secretly I would make my own wish that time wouldn’t fly by so fast.

Then something traumatic happened that changed my thinking. When my oldest son, Cullen, was 8, he was diagnosed with pulmonary hypertension (PH). As he approached his ninth birthday, I wasn’t teary-eyed over another year lost, but rather terrified wondering if there would be another year gained.

He was so sick with PH that doctors advised my husband and me to focus on the quality of our son’s life and not the quantity. From that point on, during every celebration and rite of passage, I thanked God that Cullen had made it that far, and I prayed there would be more to come.

We made his ninth birthday special by allowing him to have his first sleepover. A house full of little boys distracted me from the worry that had consumed me that year. During cleanup, I caught myself genuinely smiling at the memories made.

It was an awakening for me to see how my son was already adjusting to his new reality and clearly wouldn’t allow his illness to define him. His birthday was full of laughter, fun, and games, and he made sure PH didn’t crash the party.

The following year, PH threw him an early surprise. A week before his 10th birthday, Cullen’s central line got pulled out of his chest while he was at school. This was a scary ordeal because it meant that he was not receiving his continuous Flolan (epoprostenol GM) IV, putting him at risk of a serious PH crisis.

Fortunately, this did not happen. But it did land him in the hospital for several days because a new central line had to be placed. PH tried to crash the party that year, but it couldn’t get past Cullen’s strength and determination.

Cullen was out of the hospital in time for his 10th birthday, and he joined his fourth-grade class on a field trip to the Cedar River Watershed Education Center in North Bend, Washington. Then he celebrated with what was becoming a traditional birthday sleepover with his friends.

Time flies when you’re having fun, but you learn to appreciate that fact when battling a life-threatening illness. We didn’t obsess over where the years had gone when Cullen turned 13, as we were too busy feeling blessed that he had.

It was an adventurous birthday, though. Cullen, who was constantly being tended to, wanted something of his own to care for, and a hamster seemed like the perfect gift. He selected a cute little guy he named Russell. A few hours after Russell’s adoption, he bit a hole in Cullen’s central line.

We were starting to fear that this type of emergency was becoming a birthday tradition. Plans were canceled as we rushed to the ER. While in the process of repairing his line, I asked the nurse at midnight to stop what she was doing so that we could sing happy birthday.

Cullen with his hamster, Russell, in November 2012. (Photo by Colleen Steele)

Russell was forgiven, and Cullen learned to become more aware when holding him. It wasn’t so funny at the time, but it makes a good story now. Who knew life with PH could be so entertaining?

His 14th birthday was the last one he shared with PH. On Aug. 7, 2014, Cullen received a heart and double-lung transplant.

Cullen recently celebrated his 20th birthday. That is five birthdays so far that his donor has gifted him, and five years of appreciating every goal achieved, milestone met, and passing moment survived.

At first, the advice of focusing on my son’s quality of life instead of quantity seemed so sad. But over the years, it has evolved into inspirational words of wisdom. Aging for everyone should reflect a life well lived, and the passing of time should be a reminder of how blessed we have been to see the years fly by.

Happy 20th birthday, Cullen! Welcome to the next milestone: adulthood!

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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.

One comment

  1. Karen Whistler says:

    Thank you for sharing Cullen s story. It really has struck a chord with me. July 2016 I was diagnosed with CTEPH. Sept 2016 I had the PTE surgery. Unfortunately my surgery was only a success for 7 mos. My lower left lung had collasped n my rare Disease return. I was Misdiagnosed in 2015 for having a asthma flare up. Turned out I had 4 blood clots, one in ea leg and 2 PE s. That I lived with for 3 1/2 mos. I am beyond grateful I am still here. Thru the grace of God. Due to the lack of blood n oxygen flow on my left side. I have developed SVT Super Ventricular Tachycardia. Latest ECG said I had Sinus Bradycardia. I was also informed my 2 left pulmonary arterties are closed my two right pulmonary arterties are narrow. I was put on Adempas as a last resort. I never knew what a double edge sword meant until I heard this… Adempas is supposed to help open my pulmonary arterties, to improve my circulation puts me at a risk in throwing another clot. That’s CTEPH . I”m 61 I tried to remain positive. Because it does help me feel better. My mantra is “Keep Moving Forward. My goal is to see my great niece Bella now 10. To graduate. Two yrs ago my team of Drs at Cleveland clinic in Cleveland Ohio. Inform myself there is nothing more they can do. No Patient wants to hear. My pulmonary Dr also informed me I would never survived a heart n lung transplant. Quality vs Quantity I get it…

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