30 Days of PH: Focusing on the Joy Our Family Has ‘PHound’

Clockwise from left, Brinley, Wes, Jessica, and Augustus, the dog. (Photo courtesy of Jessica Cullum)

Day 13 of 30

This is Jessica Cullum’s story:

“Brinley has severe pulmonary arterial hypertension.” Those are words, Brinley’s dad and I will never forget. We cried and cried, and talked about how Brinley’s life was about to change, how the life we had built was about to change, and how insanely scared we were.

Here we are, almost three years later, and things are so different. After hearing Brinley’s diagnosis and prognosis, I knew we needed to do something to stay positive, because in the first 24 hours after diagnosis, all we heard were negative things, including everything Brinley wouldn’t be able to do.

My husband, Wes, Brinley, and I sat in her hospital room. I said that we needed to find a way to love life to the fullest — we just had to. The room went quiet as we all sat there thinking. Then it hit me: We needed to appreciate everything. We needed to celebrate everything. That’s how we came up with “collect the wins.”

We vowed that each of us would find “wins” throughout the day, and then each night before bed, we would talk about them.

A win could be as simple as getting two household tasks done. Or, Brinley could walk up the stairs without getting short of breath. Or, my husband had a great and safe day at work. Whatever our wins were, we found them, collected them, and sat as a family to talk about them. Then, we celebrated one another’s wins.

How do we celebrate them, you ask? Well, we put on Brin’s six-minute walk test song, “Uptown Girl” by Billy Joel, and dance and laugh. This may sound silly to most, but let me tell you, it has worked wonders for our family.

Brinley has thrived throughout the past three years of her journey, and our mental health has remained strong since we have been so conscientious about finding the positives in our day. And most importantly, we appreciate the simple things in life that normally would be taken for granted.

We are a family that gives a lot of high-fives, tight hugs, and laughs that make our bellies hurt. People constantly ask us how we do it, given Brinley’s diagnosis. Our answer is simple: We collect the wins.

We would love to hear about your wins and hope that when you hear the song “Uptown Girl,” it will get you moving like it does us.

Pulmonary Hypertension News’ 30 Days of PH campaign will publish one story per day for PH Awareness Month in November. Follow us on Facebook and Instagram for more stories like this, using the hashtag #30DaysofPH, or read the full series.