Ellie Grace impacted my life in so many beautiful ways. I was privileged and blessed to spend time with her in her last few months on earth. One memory from that time that stands out was when Ellie and Kathryn wore matching mermaid costumes for Halloween in 2016.
At a glance, these photos are of two precious sisters in matching Halloween costumes. But the emotion behind those images is so much more joy than a photo can capture… Ellie’s joy and excitement at matching with her big sister Kathryn. Kathyrn’s joy and careful attention at making sure that Ellie’s costume was laying perfectly on the grass. The way Ellie looked at herself while she was in that dress. The joy of watching Kathryn twirl in her dress and watching Ellie trying to do the very same thing. They brought joy to the Johnson family in those moments, and made Ellie’s medical struggles fade away, even if just for a couple minutes.
Ellie continues to impact my daily life in 2020. As a result of her journey in the hospital, I pursued my Masters in Child Life, a field that provides psychosocial and coping support to patients and families in the hospital. Child Life Specialists provide procedural preparation and support, new diagnosis education, sibling support, coping support during long admissions, and so much more. The way we provide this support is through play—the language of children.
One of the most important aspects of play is “dramatic play” or dress-up play. Dramatic play is a type of play where children take on roles, pretend to be that person/character/animal, and act out different scenarios. Dramatic play is vital in early child development as it promotes emotional expression, self-regulation, provides a sense of control and autonomy, and encourages their imagination.
So as I reflect back on Ellie in that mermaid dress, that time represents more than just a costume. It was Ellie understanding the world around her more clearly. It showed Ellie taking on a new character, one where she could dance, wave her magical mermaid wand, and be in control of her story. I look back on that moment with so much gratitude, both for the time with the Johnson family that day and for the beautiful example of how children live through play.
As we prepare for a Halloween that will likely look different than years past, focus on the opportunities this day brings for dramatic/pretend play for your kids. Let them get their costumes dirty because they are running around the back yard. Let the couch become a pirate ship, the blanket become a cape, and the box in the garage become a space ship. Encourage them to be in charge of the stories they tell today.
Kelsey Barber, MS, CCLS
Secretary, Brave Like Ellie
