Finding the space to breathe after years of Rett syndrome caregiving

My husband, Billy, loves to golf. After working hard all week, there is nothing he enjoys more than spending a few hours on the golf course. These days, I don’t mind how much time he spends golfing. In fact, I encourage it.

But it wasn’t always that way.

When our children were young, golf was a trigger for me. I will always maintain that being a stay-at-home mom is one of the hardest jobs in the world. There is no time to ease into the day during a commute to work. There is no train ride home to decompress. There are no lunch breaks, no sick days, and no clocking out at the end of a shift.

And yet, it was exactly what I wanted. I chose to stay home with my children, and I was grateful for that opportunity.

Recommended Reading

May 17, 2021 by Jackie Babiarz

How We Responded During the Dark Days of Our Daughter’s Diagnosis

An empty house

Still, weekends were difficult. Billy understandably wanted time to relax after a long week, and golf was his escape. But when he left for five or six hours on a Saturday morning, I was left alone caring for the kids. While he was enjoying a few hours of freedom, I was continuing the same responsibilities I had carried all week. Over time, I became resentful.

The truth was, I didn’t have an escape of my own. I didn’t have six uninterrupted hours to recharge. There was no hobby, no outing, no break waiting for me. I didn’t have an outlet for myself.

Everything became even more challenging in 2011. In January of that year, just before her second birthday, our oldest daughter, Cammy, was diagnosed with Rett syndrome. One month later, we welcomed our second daughter, Ryan. Life became exponentially more difficult as we became a special needs family.

Cammy required around-the-clock care. Because of Rett syndrome, she lost the ability to walk and use her hands. She relied on a wheelchair and needed assistance with nearly every aspect of daily living. I bathed her, changed her, transferred her from one position to another, and monitored her constantly. The physical demands alone took a toll on my body. The emotional demands were even greater.

So when my husband spent numerous hours on a golf course, it wasn’t really about the golf. It was about feeling overwhelmed, exhausted, and alone.

To his credit, Billy understood that. Over the years, he declined countless golf invitations because he knew how difficult things were at home. When he did want to play, he’d carefully test the waters first by asking if we had plans for the weekend before cautiously bringing up the possibility of a round of golf.

Neither of us was wrong. He deserved time to relax. I needed support. We were simply two exhausted parents doing our best under extraordinarily difficult circumstances.

Cammy passed away in December 2023 from complications of Rett syndrome. She was 14 years old.

The following summer, something unexpected happened. I no longer cared if my husband went golfing. In fact, I was happy for him to go.

Ryan was 13 years old and independent. For the first time in more than 14 years, I wasn’t vigilantly watching over Cammy every minute of the day. There were no medications to administer, no transfers to make, and no constant monitoring of seizures, breathing, or safety concerns.

When my husband headed to the golf course, I discovered something I hadn’t experienced in years: an empty house.

Ryan would spend time with her friends, and I’d find myself alone with my thoughts, my grief, and my newfound quietness. The same six hours that once felt overwhelming now felt restorative.

Golf stopped being a source of resentment and became a gift for both of us. Billy found relaxation on the course. I found something I hadn’t realized I was missing: peace.

Sometimes life changes so gradually that you don’t notice it happening. Other times, the contrast is impossible to ignore.

For years, golf represented the weight of caregiving and the imbalance I felt in my own life. Today, it represents something entirely different: a reminder of how much our family carried, how much has changed, and how precious it is to finally have space to breathe.

Note: Rett Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rett Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Rett syndrome.