“As a child, I had access to the best medical care, and the care of my mother and father whenever I needed them. My heart broke for all the kids at the hospital who did not have that privilege. As an adult, it is ever more clear to me how broken our system is. I sacrificed my very body over and over again, but still I was let go at the drop of a hat. We have got to do better.”
When Elizabeth was six years old, she was diagnosed with severe Crohn’s Disease. She feels abundantly blessed that all through her many hospitalizations, her parents were able to be there for her. While Elizabeth’s parents were able to be there to attend to her needs and advocate for her care, many of her friends at the hospital were not so lucky because their parents did not have access to paid leave. She remembers one boy in particular whose parents couldn’t be with him on his birthday. The hospital staff tried their best to give him a special day but it was very apparent that he wanted his parents there. She would hear kids screaming in the night for their parents, obviously traumatized. She would look over to see her mom sleeping on the couch in her room, feeling sad for the kids who didn’t have their own parents there with them at a time when they needed them most.
Now, Elizabeth is 22. She was able to work for three years after high school which led to a supervisor role but her care needs kept getting in the way. She routinely pushed herself too hard to keep up with her duties which would land her back in the hospital with no paid leave. Eventually, she was let go. When the pandemic hit and with bills piling up, she had no choice but to move back in with her parents because it was not safe enough for her to seek another job.