As a Rett syndrome caregiver and parent, I find self-care to be vital

A solo trip granted this mom some much-needed rest and decompression

Jackie Babiarz avatar

by Jackie Babiarz |

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Summer is always hard on me. I don’t get much respite with a daughter who has Rett syndrome. Summer school is only three hours a day for five weeks, so my body and mind don’t get much of a break from being Cammy’s caregiver.

My husband has always been very good about self-care. During the summer, he golfs regularly, including for charity events, and plans trips with friends.

While I excel at taking care of others, I’ve never been great at self-care. I’ll take our two girls on outings or plan a staycation for the three of us at a hotel so my husband can relax and get some sleep without waking up to Cammy’s feeding tube or oxygen machine beeping.

In July, I felt myself slipping into depression, a place that’s very easy for me to go. When Cammy would head off to summer school, I’d go back to sleep. I wanted to be in bed all day. Needing to care for my girls is the only reason I’m able to get out of bed when I’m sinking.

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I trust the system to do the caregiving when I can’t

I finally reached my breaking point and told my husband I needed to get away for a few days. This was the first time I’d asked for help in taking care of me. He didn’t hesitate. Soon, he had a flight and hotel booked for me. He scheduled a few vacation days at work so he could stay home with the girls while I took a trip by myself to decompress.

I didn’t want to go with anyone. I didn’t want to be responsible for anyone, make any decisions, or be on a schedule. Decision fatigue had hit me hard and I needed a break. I didn’t want to hear any medical machines beeping. I couldn’t bear one more appointment, insurance phone call, or scheduled anything. I needed someone else to take Cammy to the dentist, get her ready for freshman orientation, answer a hundred questions about her needs, and fill out endless forms. I just needed a break from it all.

So I went to Las Vegas.

Hitting reset

The first night, I actually slept. My brain wasn’t on overload, waiting to be awoken by Cammy gasping, coughing, or moaning, or a machine beeping. I can’t remember the last time I slept that hard for 10 hours without interruption.

Over the next couple of days, I did what I wanted, when I wanted. I got a massage, met lovely locals playing bingo, and went to bed at 9 p.m. each night. It wasn’t the Vegas trip most people might imagine, but it was exactly what I wanted to do.

I returned three days later refreshed. Caring for someone 24 hours a day is mentally, physically, and emotionally exhausting, and my Vegas trip was just the reset button I needed. It reminded me to prioritize my own self-care as a caregiver — though that’s easier said than done. I’m grateful to have a husband who helps me take care of me.

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.


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