When people ask, I tell them I’m a stay-at-home mom

There were always signs that something wasn’t quite right with my oldest child. My pediatrician had noticed his low muscle tone as a baby, and his physical development was delayed. He didn’t walk until he was close to two years old, and he required early intervention physical therapy, but because he did eventually meet his milestones, we set aside our concerns.

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.