A Reflection from Lillie Stewart
My experiential internship with Global Partners in Care gave me the opportunity to explore pediatric palliative care from many angles and perspectives. I witnessed how comprehensive care for patients and families opens doors to building community, strengthening connections, and encouraging learning. Through two months with Sunflower Children’s Hospice in Bloemfontein, I gained awareness of palliative care, myself, and the culture and history of South Africa.
When I arrived at Sunflower House, an inpatient care unit serving around 12 children at any given time, I was pleased to find a colorful playground and bright yellow sunflowers painted around the outside of the building. When I entered inside, little ones greeted me with open arms and big smiles. I came in with an open mind, but I will admit to being surprised by the vibrant energy in the house. When I thought of palliative care for children, I didn’t envision it being quite as loud or bright as this. Hearing giggles reminded me of something I’d learned working with grieving children 8,000 miles (13,000 km) away: regardless of their circumstances, children deserve the chance to be children first.
For the children in Sunflower’s inpatient programs, the house provides a much needed space where patients receive the attention and stimulation they need to live each day to the fullest. Beyond the walls of the house, Sunflower also serves over 300 children through its community outreach programs. On a few occasions Sunflower’s community nurse, Sister Olga Molahloe (Mme Olga, as we call her in Sesotho), brought me along to meet patients in the areas surrounding Bloemfontein. I learned what life looks like for some young people living at home with life-limiting conditions. Sometimes it involves playing with race cars or running around with neighbors. Other times it involves playing hopscotch or resting inside. I heard from mothers, grannies, foster families, and grandpas. For many children with palliative care diagnoses, the structure of supportive schools and community groups offered a key source of connection and purpose.
Many of the children at Sunflower House have developmental delays that would make it challenging to enter a classroom, but this does not preclude them from learning through play and connection. In that spirit, I had the joy of co-creating a sensory garden for all the kids that call Sunflower House home. Two days after I arrived in Bloemfontein, I sat down with Joan Marston, founder of Sunflower (among many things) to come up with a rough plan for an experiential internship. Joan (also known as Sister Joan, Mme Joan, Canon Joan, Mrs. Marston and my host for this adventure) had plenty of ideas to share. When she proposed creating a sensory play area, I knew it would be a great place to start. I estimated that we could design and create a sensory garden in time for Mandela day four weeks later. It took almost twice that long to have the garden ready for play, but the extra time was worthwhile. I began by learning as much as I could about sensory play spaces. I learned that Pietermaritzburg Hospital had created a sensory garden over a decade ago, and I found other digital resources for designing sensory gardens. My highest priorities in the garden design process were to center patients’ voices and to create a space that would be accessible and enriching for any of the children that Sunflower serves.
Collaboration central to the project. I sat down with a current and former Sunflower patient and talked through some early ideas. With their guidance, we prioritized a wall of tin cans for musical play, and a collection of art works incorporating hand and footprints to capture a moment in time for each of the young patients. Volunteers and supporters from nearby groups contributed time and labor to the space on the far side of Sunflower’s playground. To the center of the garden we added two sandboxes, one full of sensory toys and another with sand toys that would be more accessible for children with limited mobility.
Leaving South Africa, I am hopeful that the garden will continue to grow into a place for patients to build new skills, find grounding and calm, and connect to the many community members that keep Sunflower running!