The Worst Thing Happened and It Turned Out Great

"Sometimes when things are falling apart, they may actually be falling into place." — Unknown

Like many parents of young adults with severe disabilities, I constantly worried about what would happen to my son if something happened to me. Who would love him the way I do? How would other people know how to take care of him? Would he be inconsolably sad? Where would he live?

These are the kinds of worries that keep family caregivers up at night. Like many caregivers, I tried to push these worries aside. But fear doesn’t disappear just because we ignore it—it burrows deep, creating a constant undercurrent of anxiety.

Then the worst possible thing happened—I got very sick. A respiratory virus turned into bronchitis and then pneumonia. I isolated myself in my bedroom for weeks, except for several visits to urgent care. I felt terrible about being unavailable to my son and his nurses and caregivers. I felt helpless and guilty. With laryngitis, I could only text. I slept most of the time.

Finally, my husband took me to the emergency room, and I was admitted for several days. I was on oxygen, IV antibiotics, and multiple medications. Even after being discharged, I was still coughing too much to talk and completely drained.

But something beautiful happened. Others swooped in to fill the gap. My husband, who normally commutes to work 500 miles away during the week, stayed home. My daughter, who lives a thousand miles away, flew in to help. My son’s staff provided seamless 24/7 support, covering each other’s shifts and making sure my son had everything he needed. They even threw him a birthday party with cake, party hats, and presents.

And here’s the most amazing thing of all. My son thrived in my absence. He became more independent, and not a single medical crisis occurred—a true miracle. He was healthy and happy without me. I was surprised and relieved.

This experience gave me an incredible feeling of freedom. It was transformational. I was freed from the belief that I alone could care for him the way he needed to be cared for. It felt like stepping out of a prison I hadn’t even realized I had built for myself. I also learned that I could trust others to care for my son. They rose to the occasion. They allowed me to prioritize my own well-being.

Sometimes, what we fear most turns out to be the breakthrough we need.

This experience became a powerful proof of concept. I had created a comprehensive care document that I used to train my son’s care team and which they could use as a reference guide. To get past my own resistance, I imagined I had won an all-expenses-paid trip to Paris. I told myself I had to complete the care guide before I could take off on this dream vacation. Instead of focusing on the fear of my own mortality, I turned the project into an act of love for my son. I even named the care document How We Love Eli.

Completing it isn’t just responsible—it’s freeing. Even transformational. And having a coach by your side to keep you focused and making progress, with a system that uses your personal strengths to overcome your resistance, means you can get it done, too.

I would love to help others create their own comprehensive care guides. Please let me know if I can help you or someone you know.