How strange to be having free time after years without it
Life now shows us how busy we were caring for our daughter with Rett
In 2015, when a girl with Rett syndrome passed away, we for the first time experienced the death of someone we knew who’d had the disease. Our hearts ached for her family. I couldn’t help thinking we’d also be in that situation in the not-so-distant future.
Months later, the girl’s father attended our annual fundraiser, Cammy Can’s Cinderella Story, where all proceeds went to the International Rett Syndrome Foundation. We asked him how he was doing. One of his comments was “it’s so strange how much time we now have.” That sentiment stuck with me.
It’s bizarre how much time we have since our oldest daughter, Cammy, passed away from complications of Rett syndrome in December 2023. Time to sleep. Time to rest. Time to attend all of our younger daughter’s extracurricular activities. Time for self-care. Time to socialize with friends and family. Time not spent making continuous decisions. Time not spent driving to appointments. Time not on a schedule of strict feeding, changing, nebulizer, chest compressions, and oxygen care.
My sense of time today
I originally felt guilt for having so much time. With our other daughter Ryan now being a pretty independent teenager, I could go out to dinner or hang out with friends. Billy, my husband, and I could go on dates again and reconnect one on one, which we hadn’t been able to do in 15 years.
Having time to sleep is odd. Somehow we survived 15 years with limited sleep. Even when we’d fall asleep, we never had quality sleep because we were always on high alert given Cammy’s poor sleep, when she’d frequently wake up at 2 a.m., or the oxygen machine would beep because the nasal cannula slipped, or we’d need to start her 5 a.m. feeding to get it done in time for school.
Last summer, our first summer without Cammy, was when I particularly noticed how much time I had. Summers were the season when I spent all my time with Cammy. Back then, daily scheduled routines took up most of my day. We had four-hour-long feeds, weekly appointments, and weekly private therapies. Transferring her and transporting her as I ran simple errands took an excessive amount of time. On top of all that, I was busy finding activities and excursions to keep us both entertained and busy.
Last summer, though, I felt alone and lost. I didn’t know what to do with all my time.
Caring for my daughter with Rett syndrome happened around the clock. That father was right. It’s so strange how much time we now have.
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About the Author
Corry Hughes
Yes, I had that same sense when my daughter Elora passed away in 2021 at age 32. It was bizarre not to be caregiving 24/7, a sense of "What do I do now?" I had to reinvent myself, or rediscover what gives my life meaning beyond Elora. During the first year of grief and healing, I organized a lot of closets and drawers, etc., little things I never had time for. And I had my knees replaced, which I could not have even considered while Elora was still alive, that important self-care piece. My husband and I went to concerts and music festivals, things we love to do that were so complicated before. Eventually, I have become more engaged with advocacy groups and meaningful community projects. Now, though, my husband has a chronic illness that will be terminal. My caregiving days will soon be upon me again. It seems to be my role, my purpose in life. So be it. I will do it with love and devotion in my heart, as I did with my daughter.