What does it mean to experience expected loss as a parent?

A columnist processes the loss of her oldest child, and things she did to prepare

Jackie Babiarz avatar

by Jackie Babiarz |

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I’ve been in grief therapy ever since my oldest daughter, Cammy, passed away last December due to complications of Rett syndrome. When I filled out the intake forms, a question really struck me: It asked if my loved one died unexpectedly.

I sat there staring at it for a minute and realized that Cammy’s passing was not unexpected. We knew she would have a shortened life span when she was diagnosed with Rett syndrome in 2011. We didn’t know how many years we would have with her, but we knew it would be shorter than an average person.

In the spring of 2022, I digested the orthopedic surgeon’s words when discussing all of Cammy’s hospitalizations. He told us bluntly that one day Cammy would go into the hospital for a respiratory problem and not come out. In December 2022, when she was hospitalized for COVID-19 and pneumonia, I didn’t think she would pull through. When she did, I felt like it was a get-out-of-jail-free card. I knew we didn’t have any hospital admissions with discharges left.

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Cammy returned to the hospital at the end of October 2023. On Nov. 6, she stopped breathing. I thought that would be the day we would lose her. They managed to resuscitate her, but we had to make very difficult decisions because we knew there wouldn’t be a next time. She held on until Dec. 13.

I reflected on all of this and then thought of the parents who are completely blindsided by the loss of their child. It doesn’t make grief any worse or better, but we knew Cammy’s life would be cut short. She wasn’t killed in some kind of an accident, leaving us with the incessant and unanswered “if only” questions.

The only thing about expected loss is that we were truly able to make sure we helped her live life to the fullest. We made sure to create core memories for all of us. I intentionally gave Cammy and her little sister, Ryan, shared experiences, like getting their ears pierced together, so that they’d have special memories forever.

Loss and grief are extremely complex. Expected or unexpected, it goes against the natural order to lose a child. I am truly grateful that we knew when it was going to happen so that we could be with Cammy until the end. We surrounded her with love and comfort. Cammy was not afraid. She was ready to be free of her imprisoned body. Watching her body completely relax and rid itself of Rett syndrome was the completely unexpected part for 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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