Play

 

When was the last time you had recess? I don’t necessarily mean running around on an elementary school playground, although that might be fun, but allowing yourself time to be free, play, enjoy the moment. When we began this complex medical journey with H, it was overwhelming. I felt I had to stay focused on the best doctors, the most successful treatments and the most promising research. Like all complex medical journeys, this one had many twists and turns and right when it felt like he making progress, another symptom or medical roadblock would surface. Discussing the latest new medical issue, I remember saying to his pediatrician, H must be the most unlucky person. The doctor looked at me and said “No, you may be the most unlucky, but H is just plugging along.” His doc was right. This was his reality. He didn't know any reality outside of this journey. Driving home, I noticed H was happy and playful, quickly forgot an exhausting medical day.

 Making time for play actually started a few years earlier when H was only a few months old. I asked my Mom if she would have time to watch H for a few hours. Overwhelmed with our new and complex medical journey, when my Mom arrived, I explained what to watch for and all that needed to be done. To be honest, I don’t remember where I went or what I needed to do but I will never forget our conversation when I returned. I arrived home, greeted my Mom and immediately walked over to check on H who was sleeping peacefully. I thanked her and commented on how contently he slept. She answered “well, we played pretty hard today.” My Mom knew that within this complex journey what he needed was time to play and nobody was better at providing that opportunity than his grandparents.

Most parents with a child living with LS are often asked by strangers what their child has, or worse, what is wrong with their child. When I joined the Board of Directors at the Lowe Syndrome Association, I asked if I could take candid shots at an upcoming conference. I knew that these boys and men living with Lowe syndrome were charming. Photos showing their social, happy, and sometimes mischievous behavior would capture the hearts of anyone who took time to engage. During the conference, most of the boys and men with Lowe syndrome were in care rooms grouped by age, allowing their parents the opportunity to listen to doctors, researchers, and speakers and connect with parents on the same medical journey. Walking into each care room, I would quietly observe, then take candid photographs. The boys were mostly happy, laughing, and playing with the care workers and each other. The resulting images showed the personality of each boy as they played. If people could see beyond the medical, they would see individuals with their own delightful personalities who just want to play and have fun. 

When I look back, all of the medical appointments, treatments and therapies are a bit of a blur but I remember the times we connected through play. Times when we were just a parent and child having fun, doing silly things, making new discoveries and enjoying each others company.

 

With all of the complexities life offers, have you made time to play?