NURSING SCHOOL CAN prepare you for some of what you'll experience as an RN—it can prepare you to successfully hang your first I.V. bag, insert your first urinary catheter or nasogastric tube, and especially recognize the need for a rapid response team. But it certainly can't prepare you for everything.
Besides being a nursing student, I work as a nursing assistant for a home health agency. One of my patients has taught me more about therapeutic care and being a strong patient advocate than any clinical rotation ever could. Here I'll call the patient Hope because she instills in me the desire to find a way to communicate for all my patients and gives me confidence that I can make a difference in my patients' quality of life.
A beautiful 6-year-old girl, Hope is truly a miracle. Born with a rare chromosomal abnormality, she underwent multiple surgeries for congenital heart defects and hip dysplasia shortly after birth.
Hope has global developmental delays as well as multiple physical abnormalities, including dysmorphic facial features and hip dysplasia, which makes walking difficult. Because she has expressive aphasia, she also has trouble communicating with others. Despite all these challenges, Hope attends kindergarten in a special school that can meet her needs. Supported by her family, friends, and me, she proves to us every day how far she's come.
Our everyday encounters
I've been working with Hope for nearly a year and a half. Besides helping her with activities of daily living, I help her participate in things that kids her age typically do—swimming, visiting the library, and shopping for new clothes. We also enjoy visiting places such as the zoo, nature preserves, museums, parks, and the nearby farm.
Our adventures together are a lot of fun, but taking Hope out into the community can be challenging. As I maneuver her wheelchair through a set of nonautomatic double doors, Hope gazes up at me as if she wishes she could do something to help. Other little girls often approach Hope to introduce themselves while she's using her walker or splashing in the pool at the local YMCA. Hope looks at them and pats my leg, telling me to say “hi” for her. Communication is a huge barrier for Hope and reminds her that she's different.
On one outing, Hope made me realize the importance of our relationship. As we made our way through the Franklin Institute, a science museum in Philadelphia, she looked around in amazement. Not quite sure what we should see first, I grabbed a schedule. As Hope looked up at me with a huge smile, I knew it was going to be a good day. I chose to take her to a demonstration about the chemical reactions that occur when creating fireworks. As we entered the demonstration room, I had my reservations. Does Hope want to see this? Will she be okay with the noise? Where's the nearest exit in case we need to step out mid-show?
To my surprise, Hope enjoyed every minute of the show. She laughed and clapped her hands to cheer for the demonstration. After she cheered a few times all by herself, two little girls in front of us looked at her, then asked their mom, “What's wrong with her?”
Hope looked at them as if she wanted to speak. She knew that they were staring at her because she was different. As they continued to watch her, the woman turned to me, ready for an explanation.
Instead, I remarked, “This show's great, isn't it?”
Making a difference
Nurses must realize that at times we're our patient's only voice. Finding ways to communicate with (and for) our patients may be very challenging at times. Throughout my time working with Hope, we've developed our own way to communicate. It's funny that I can go through an entire day with her without it dawning on me that I'm the only one speaking.
Communication can easily get lost in busy healthcare settings. We need to realize that we can make a difference with the simplest of gestures, like speaking up for a patient as I did for Hope at the fireworks demonstration. It wasn't the response they were looking for, but it was a response that I knew Hope would give if she could speak for herself.