Lindsey van Gennep, RN, a nurse who provides pediatric home health care for the BAYADA office in Manchester, NH, recently published a Viewpoint piece in the American Journal of Nursing (AJN, volume 118, issue 9) titled Afraid to Notice: On Responding to Children with Visible Disabilities.
In her compassionate, moving article, van Gennep shares her observations as a pediatric nurse who cares for children with serious, chronic conditions and complex medical needs. Her insights are a reminder to all of us to ‘see the child, not the disability’ when we encounter kids with visible differences.
As van Gennep wrote in AJN, “As a pediatric nurse working with medically fragile children, I have noticed a fault in others that I have only recently been able to work on in myself—the one thing worse than staring at a child with an obvious disability is to conspicuously pretend we don’t notice the child at all.”
The opinion piece started as a simple paragraph van Gennep posted on a Tumblr blog, but when she submitted it to AJN, an editor helped her expand it into a lengthier article for print and online publication.
“Most of the reactions I’ve received to the journal article have been from current and former nursing colleagues, and many of them were excited that I addressed an issue they’re so familiar with,” van Gennep said.
“My first job as an RN was working with pediatric patients; many of them had complex needs like tracheostomy and ventilator care, feeding tubes and catheters,” van Gennep said. “I took a 9 to 5 office job when I became a mother, but I missed working with kids, so I started working per diem for BAYADA Pediatrics about a year ago. Now I have one steady male patient—a toddler who requires 24-hour respiratory support—and I’m so happy to be working with kids again. It’s so rewarding to get to know each individual child and learn how to interact with them if they’re nonverbal or have developmental delays. It’s fun to figure out those relationships and what makes them happy.”
“Some children with disabilities are very excited to see new people when I take them out,” van Gennep explained. “When we encounter other kids, especially young kids, they’re curious and they want to engage, but it’s usually the parent who pulls them back. I get it—it’s just discomfort with the unknown. Not knowing what to say or do. But now that I really understand these kids, when I see them, I always try to stop and say ‘hi’ to the child and to the parents. The parents usually are so relieved! Because you have to remember, life can be isolating for these children, but it’s also isolating for the parents.”
Van Gennep says now that she’s a mom, the lives and feelings of her pediatric patients and their families always remind her of her own 3-year-old son Wyatt, who lives with Lindsey and her husband Conor in Kingston, New Hampshire.
BAYADA provides nursing care at home and school to children from birth through adolescence.