The part I never got used to while raising a child with Rett syndrome

Having a child with Rett syndrome who can’t communicate their needs, desires, and emotions as easily as a neurotypical person does is sad, frustrating, and complex. There were many times when we asked our late daughter, Cammy, a series of yes-or-no questions to figure out what was going on in her mind. Other times, it was gut-wrenching to see her sad and we couldn’t figure out why.

I vividly remember one summer day when Cammy was 6 and her younger sister, Ryan, was 4. Cammy had a great day full of smiles and giggles at summer school and swim camp. But she was pretty lethargic during aquatic therapy, which was understandable after a full day of school and swim camp. Still, she was all smiles during dinner, particularly when she ate her dessert. Then she was very relaxed in the tub and seemingly ready for bed. I went to check on her about a half hour after we put her to bed, and tears were streaming down her face. Cammy rarely cried. It was heart-wrenching, especially because I couldn’t figure out why she was crying.

Cammy’s eyes were very expressive, a window to her soul. By using routine questions, I figured out that nothing was physically hurting her. She didn’t feel sick. She was just flat-out sad. She interacted with dozens of people every day, so I wondered if something had happened while she was at school or camp. Or perhaps one of us had made her sad.

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My heart was tearing apart as I tried to fix the situation. Deep down, I knew there was a good chance I wouldn’t be able to figure it out. I didn’t bring up other stuff that might upset her even more, such as, “Are you sad because you couldn’t go off the diving board?” “Are you sad because you can’t sneak down the stairs like Ryan?” “Are you sad because Ryan gets to play at friends’ houses without you?”

After I asked her a series of yes-or-no questions, I thought I’d figured it out. I suspected it was because, due to a change in summer schedule, she hadn’t been going potty like she usually did, which often made her upset. I changed her when she got home from camp, and Ryan had innocently commented about her “poopy diaper.” I think Cammy was extremely sensitive about having to wear diapers as a backup plan.

I went into Ryan’s room sobbing and explained that Cammy was sad. Tears filled Ryan’s eyes as well, and she asked why Cammy was sad. I gently explained the situation and suggested that we start calling her diapers “unders” or “underwear.” Now there were three Babiarz girls crying. Heartbroken, Ryan sobbed as she climbed into Cammy’s bed and gave her a hug. She apologized and said, “I love you.”

We thought that everything had been resolved, but when I checked on Cammy an hour later, she was still awake with tears in her eyes. I asked more questions and she indicated that she was lonely. My heart broke into a million pieces. All I could think of was how completely and utterly loved this little girl was by her family, friends, and thousands of strangers. But she was crying herself to sleep because she felt so lonely.

I never got used to that part of raising a child with Rett syndrome. I lived in constant fear that something would happen to Cammy, either physically, mentally, or emotionally, and she wouldn’t be able to defend herself or tell anyone. That was a scary reality of life with Rett syndrome.

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