We had counted ourselves lucky to find Sofia, a local in-home childcare provider who had created a loving and affordable environment for our first child, Cassidy. Sofia now stood at our front door in Los Angeles and smiled sadly as she handed me our daughter’s diaper bag. “I’m so sorry,” she said. “I just don’t think I can take care of her anymore.”
Although it’s been over 20 years, I am often transported back to that moment. We had just returned home from a week in the hospital with our 16-month-old daughter. The diagnosis: Type 1 diabetes. After 48 hours in the intensive care unit, we spent another week learning how to give insulin injections and test her blood sugar. As we left the hospital, the nurse cautioned us, “Don’t forget the 2 a.m. blood sugar check. Her young brain is still developing and low blood sugar at night is dangerous.”
Through the fatigue and worry in the hospital, the broad implications of Cassidy’s diagnosis had not yet registered. What were our options? We lived in Los Angeles and had already struggled to find affordable childcare. Quitting my job was not an option – our family’s access to healthcare was tied to my employment. And anyhow, we needed both jobs to make ends meet. Waitlists at childcare facilities were impossibly long, and when there was a spot available, we were repeatedly told they did not accept children who needed injections. “Have you considered hiring a nurse to care for your daughter?” one of the receptionists suggested.
We somehow found a path forward. We filled out FMLA paperwork to protect our jobs. Family, friends, and coworkers showed extraordinary kindness. We exhausted our sick and vacation leave. We took unpaid time off. Life became a strangely choreographed dance in which my husband and I handed Cassidy off at random rendezvous points around Los Angeles so the other could go to work. He scheduled his classes at night so I could work during the day. We held on and got by.
During the Covid-19 pandemic, parents of young children universally experienced these same challenges. Lockdowns, quarantines, and unexpected closures at childcare facilities meant parents had to stay home from work to care for their young children. In 2020, approximately 5.1 million American mothers stopped working for pay, and over 50% of families with young children experienced a decline in income. The impact was most profound among households of color. I felt tremendous empathy for these parents of young children as the pandemic deepened. I had lived their isolation. Their loneliness. Their loss of control.
Now, childcare facilities are back in business, and some of the challenges faced by families of young children have begun to fade in our collective memory. But unlike the pandemic, type 1 diabetes never recedes. To parents of young children with type 1 diabetes: I see you.
This is one of the many “Whys” behind Diabetes Toolkit, a non-profit organization dedicated to providing knowledge, creating connections, and advocating for change for people with diabetes. Join us. www.diabetestoolkit.org.