Our guest post today is from Sarah, a graduate of the OHSU School of Nursing’s Pediatric Nurse Practitioner Master’s program this past June. She is currently finishing her Doctor of Nursing Practice degree at OHSU and working at a pediatric primary care clinic in the Portland Metro area. She is thrilled to be partnering with Northwest Kidney Kids for her DNP project!
A map dot was where my directions took me on a hot and hazy August afternoon. Knowing only a handful of people beforehand, I was slightly nervous but overall excited for the weekend ahead. When I pulled into the parking lot and entered the main building, I could feel my worries evaporating from my body. The hallway was filled laughter, smiles, and hugs. This weekend was Northwest Kidney Kid’s Family Camp, the annual opportunity to meet and connect with families who have a child with kidney disease. NW Kidney Kids is an organization dedicated to supporting and educating children with chronic kidney disease and their families, and it is the only organization with a focus on serving youth with chronic kidney disease and their families in the Northwest. As a pediatric nurse practitioner and DNP student, I am so excited to be partnering with NW Kidney Kids for my DNP project and working to further support their mission. Attending Family Camp was a unique opportunity to learn more about the organization and the population they serve and to gather information to inform the direction of my DNP project.
As the weekend unfolded, I learned how the children with kidney disease were diagnosed at all ages. Some were diagnosed as toddlers, others as high-schoolers, and some were found to have kidney problems on their prenatal ultrasounds. I learned how these families have navigated the complex medical system and continue to rally through hospitalizations, appointments, blood draws, medications, new diagnoses, dialysis, and transplant. Families who have been attending camp for over a decade spoke passionately about how camp made them feel less alone and how they eagerly want to meet families with a child newly diagnosed with kidney disease to walk beside them on their journey. Other families said the beauty of Family Camp is “not having to explain” because their fellow NW Kidney Kids families have experienced so much of the same ups and downs as well.
What struck me was observing how kidney disease affects all walks of life – babies, toddlers, teens, traditional families, blended families, varying ethnicities, languages, socioeconomic statuses. The beauty of NW Kidney Kids is that regardless of your attributes, you were welcomed with open arms. Their message of “we want you here” shown like bursting fireworks lighting an otherwise dark night sky. It did not matter if you had a G-tube, wheelchair, timed medications, or a torso-length scar. You were welcome. You were important. You were loved.
During the 3 days of Family Camp, NW Kidney Kids scattered 600 Love Rocks on the retreat property. Love Rocks are small rocks with brightly colored, patterned fabric hearts and created by another wonderful organization. These Love Rocks dispersed on the retreat property by NW Kidney Kids were symbols of strength, love, joy, hope, success. You could either keep the rock you found for personal inspiration or take it home with the intention of giving it to someone else and uplifting them. Wouldn’t it be great if we could all be Love Rocks for one another?
After reflecting on my time at Family Camp, I am going to focus on the role of siblings of children with chronic health needs and how to support these siblings for my DNP project. I intend to start a pilot program Sibshop for siblings of children with chronic kidney disease in the Portland Metro area.
Resources and Event
If you are interested in supporting Northwest Kidney Kids, please consider registering for Strut Your Kidney, the first annual NW Kidney Kids’ 10k, 5k, or 1k fun run/walk. On Sunday, September 24, we have the opportunity to celebrate, honor, and raise awareness for children with chronic kidney disease, and all proceeds raised go to Northwest Kidney Kids. For more information, go to https://www.crowdrise.com/StrutYourKidney.
