The Unexpected Career

But when he was four years old and not growing, my doctor ordered tests. They revealed a diagnosis of muscular dystrophy, a genetic mutation that causes the body to break down muscle much faster than it can recover. All parts of the body are involved, from the leg muscles to the heart, lungs, and diaphragm.

After diagnosis, we were thrust into a new world: specialist appointments, medical tests, medications, mobility devices, and the myriad changes that come with a medically complex child. My days were spent making and attending appointments, researching the latest supplements, and figuring out insurance and specialists. I also needed to test my other children, who thankfully were negative for this condition.

Early on, we’d take a six-hour road trip twice a year to the leading hospital in our region for this specific diagnosis. It was a significant brachah — we knew families flying from all over the world to see this team, so the six-hour drive seemed like a fair deal. But that didn’t make it easy. I had to decide if my son should join medical trials, investigate the treatments in the pipeline, and used risk-benefit assessments to decide whether or not to proceed with newly approved drugs. It soon became obvious that while my husband and I could attempt to juggle everything together, it was in our son’s best interest to have one parent fully dedicated to his needs. I had to step back from my career responsibilities, and eventually, I stopped working entirely. My career goals were put on permanent hold.

We live in a world that measures the success of a woman not just by the family she raises, but by her career path, as well. I had taken a lot of pride in my part-time marketing business and felt a lot of satisfaction working outside the home. But clearly, life had taken an unexpected turn.