What caregiving taught me about second chapters in life
The skills we build through caregiving also apply to leadership roles
Written by |
The first day of my master’s degree program in healthcare, I looked around the room and did the math: physician, more physicians, hospital administrator, physician. And then there was me, a mom whose medical training came from eight years of specialist appointments, insurance appeals, and late-night research after my son’s diagnosis of Prader-Willi syndrome (PWS).
I’ll admit, I walked in that first day wondering whether I belonged there. But I quickly learned that what I brought to the table became the basis for much of the advocacy work I’d end up doing in the future, such as making sure the patient’s voice is included in everything involving my son’s diagnosis. When we discussed care coordination, access to care, or patient outcomes, I was able to share what those words mean at a kitchen table at 2 a.m. My classmates taught me the language of healthcare systems, and I hope that I helped them see the families behind the data.
That experience opened doors I hadn’t known existed. I learned more about my new role as a caregiver and went on to start a nonprofit, born from a need I saw in our community. Later, I had the honor of serving as the CEO of the Prader-Willi Syndrome Association | USA, where I worked alongside families, researchers, clinicians, and other partners who shared a vision of a better future for people with PWS.
Every bit counts
Today, I’ve come full circle to state-level advocacy, where policy decisions about newborn screening, Medicaid, and family support directly shape the lives of families like mine. I’ve also co-founded another nonprofit called Nebraska Rare.
Due to my passion for caregivers and giving back to the community, my focus remains on the caregiver and their loved ones. I always look for ways to improve the lives and health of caregivers. I have the privilege of making a difference in this area while working as the head of social impact at BlueOakNx, a California-based biotech research firm and public benefit corporation, as well as consulting for other nonprofits. Everything I do today focuses on caregivers and how to improve their lives.
Through every chapter, one thing has stayed the same: I’m still learning. I’m still asking questions, taking classes, and stretching into new roles, even at my age, which I’ve stopped seeing as a weakness. Curiosity is the key to expanding my horizon, and I’m always looking for ways to make the path for the next family easier.
To my fellow caregivers, especially those of you who became parents a little later in life, I want you to hear this: It is never too late to find a second focus. The skills you’ve built through caregiving are real. You’ve negotiated with insurers, coordinated care teams, advocated in individualized education program meetings, and stayed calm in a crisis. Those aren’t small things. They’re leadership.
Your second focus doesn’t have to be an MBA or a nonprofit. It might be mentoring a newly diagnosed family, speaking to a medical school class, joining a parent advisory board, advocating for others on a state level, or simply sharing your story. Every bit of it counts.
I hope you’ll take a moment to honor the caregiver you are, and then imagine who you might still become. Our journeys may have started with a diagnosis, but they don’t have to end there. It is also important during this National Family Caregivers Month to realize that caregiving can be hard, draining, and sometimes overwhelming. There are many great resources, and it’s important to ask for help if you need it.
A quote from former first lady Rosalynn Carter, who spent decades championing family caregivers, has always resonated with me: “There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.”
Note: Prader-Willi Syndrome 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 Prader-Willi Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Prader-Willi syndrome.
Leave a comment
Fill in the required fields to post. Your email address will not be published.