Waking up in the middle of the night to care for our late daughter

Caring for our late daughter, Cammy, often made my husband and me feel like we were sleepwalking through the night. Cammy had profound special needs due to Rett syndrome, requiring us to get up in the middle of the night. Our baseline became so skewed over the years; it’s amazing how a caregiver’s body can adapt.

When Cammy was going through a regression between 6-18 months of age, we were like zombies. She had been sleeping through the night at 3 months old, but that quickly changed when she began experiencing night terrors. We didn’t know what was happening, and Cammy certainly didn’t, either.

For six months straight, we would wake up each night to a gut-curdling scream, like someone was attacking our child. When we went into her room, her eyes were closed, but she was screaming. All we could do was pick her up and cuddle with her on the couch until she calmed down and fell back asleep. For my husband and me, it became so routine that we never fully woke up; we just took turns going through the motions.

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During the final two months of that six-month stint, Cammy would also vomit in the middle of the night. During this time, my husband and I both had to get out of bed. One of us would bathe Cammy while the other changed the sheets and started the laundry. These episodes became so routine that they no longer startled us. We never fully woke up, so we were able to go right back to bed once Cammy was clean and calm.

When Cammy was finally diagnosed with Rett syndrome before the age of 2, our neurologist explained that the night terrors were likely a result of her body trying to process the regression. The vomiting was from gastrointestinal issues related to Rett. Once Cammy’s regression ended, the night terrors and night vomiting stopped.

Waking in the middle of the night didn’t stop, though. Next, Cammy experienced horrible sleep quality as well as “angel parties.” She would wake up every night between 1 a.m. and 3 a.m. and moan until one of us went to her room, where we would find her smiling. I think she thought everyone should be up at that time.

Other times, we would wake up to her laughing. Many in our community sweetly refer to these episodes as “angel parties.” Children with Rett are often called angels, and there was no explanation for the laughing in the middle of the night. But believe me: We much preferred waking up to laughter than to screaming and vomiting. When Cammy woke up giggling, I’d happily volunteer to attend to her.

There was nothing we could do to get her to fall back asleep. Since she was unable to walk, talk, sit up, or do anything to entertain herself, we eventually put a television in her room. Like zombies, we’d go into her room in the middle of night, put on “Sesame Street,” kiss her goodnight again, and go back to bed.

For 14 years, that was our life. It was awful, and I have no idea how we sustained it that long. However, since Cammy passed away in December 2023, I find that I miss waking up in the middle of the night to see her smiling face.

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