How my parents navigated the risk and reward of my agency
I'm grateful for my full life and relative independence, despite my PH
When I was growing up, my parents never let my pulmonary hypertension (PH) keep our family from living a full life. I sometimes wonder if this determination had something to do with me being the youngest child. By the time I was diagnosed with PH at age 4, we were already fully immersed in our life as a family. And while my illness changed many things, my parents never let it slow us down.
In one of my early appointments, my father, a passionate skier who raised us with a love of the sport, asked my doctor if there were a way to assess my tolerance for higher altitudes. This question threw my doctor for a loop, and I don’t believe we ever got an answer. But ultimately, we were advised against trips to such locations given that my lungs were already under stress.
Nonetheless, my dad never let that advice hinder our family’s enjoyment of skiing. We made great use of what our home state of Minnesota had to offer, spending weekends at the local ski hills. And twice when I was in elementary school, we made trips to Whistler, Canada, where the average elevation isn’t much different from home. On these trips, I experienced the mountains, something I still remember fondly today.
The Canada trip wasn’t the only time we traveled in my childhood. When planning a trip to Mexico over spring break, my mom opted for Cabo San Lucas, a location warm and far away, but with an English-speaking hospital. It was also only a short distance from California if an emergency came up.
This trip was one of our riskier choices, but my parents always made these decisions in an informed and responsible manner. We researched the area, packed extra medical supplies, and always operated from the mindset of what was reasonable for us as a family.
As my illness progressed, we transitioned from those vacation locations to one in Florida, which made me grateful that we’d stretched our limits when we could — as neither the Canada trip nor the one to Mexico is feasible for me now. I feel so fortunate to have gathered those experiences when I did.
My growing independence
Along with travel, my parents didn’t let my illness hinder my standard childhood experiences. I was living with a central line and a 24/7 infusion of critical medication, along with a strict regimen of oral medicines, but my parents let me go to friends’ houses and have sleepovers, seemingly without a second thought.
I commend them for that now, having hindsight to understand just how much trust that must’ve taken. And while I know they were trusting other parents who were watching over me at any given house, I also know they must’ve placed a heavy amount of trust in me.
Even when I was a child, they recognized that my circumstances had made me mature for my age, and they always trusted me to speak up if something happened that I couldn’t manage myself. I was, within reason, given a great deal of agency over my own care.
This trust played a big role in our relationship, especially when I considered college and from there transitioned into adulthood. My parents didn’t pressure me in those steps, but rather equipped me to make reasonable choices for myself.
I opted for a college that was close to home, knowing that their support, along with access to care, was critical for my success. I lived on campus but was always in close touch with my parents about how I was doing. I even moved home for a while during my sophomore year, when hypothyroidism wreaked havoc on my health.
I took over my day-to-day care, including mixing my medication and performing sterile dressing changes for my central line. My mom, meanwhile, continued to manage my appointments and our inventory of medical supplies, which she delivered to me regularly. This teamwork played a large role in my successful completion of a four-year nursing degree, as well as the memories I was able to make along the way.
My parents have never been ones to say “You can’t do that.” And I’m so grateful for that. Their willingness to look for compromises where others might’ve given up altogether changed my life. As a family, PH took a lot from us. But looking back, the life we’ve led feels incredibly full.
My parents, while cautious, boldly walked the line of risk and reward. I’m so grateful for the way they bravely navigated this journey on my behalf, always with my best interests in mind. It’s because of them that despite my PH, I have such a wonderful childhood to celebrate.
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.
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Leah Worrell
Thank you for this, as a parent of a PHighter who was diagnosed when he was 5. From day 1 I told the doctors no matter what I would not sacrifice his childhood because of it. He was going to have the most normal childhood I could give him while considering that his limitations will be different than others. This article gave me the validation that my hopes and dreams of that can be a reality.