Seizures are now part of my daughter’s playtime with her baby doll

“Mom, we need help. Baby is having a seizure.”

The words, unclear and jumbled, came from my 10-year-old daughter, Avery, who has Dravet syndrome. Avery loves imaginative play, and her favorite thing to do is play with her baby dolls. Recently, that play has included her baby dolls having seizures.

This caught me off guard at first. What kind of child pretends that their toy babies are having seizures? How weird would it be to other kids — and parents, too — if in the middle of ordinary play, Avery began pretending that her baby doll was seizing? I suspect it would catch them off guard, too. Even for a parent of a child who has regular seizures due to Dravet syndrome, a scenario like this feels uncomfortable.

However, after processing what Avery was saying and how she was playing with her toy dolls, I began to recognize that she was only acting out her lived experience.

To Avery, there is nothing abnormal about seizures or rescue medications, nothing out of the ordinary about daily seizure meds, oxygen tanks, ambulance rides, or hospital stays. This has been her normal since she was 3 months old, when her first seizure occurred.

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Processing her own experience

I have noticed that when she plays this way, it is fairly detailed. She has talked about her baby needing to be turned on her side while seizing, her baby needing a doctor, and even how her baby was having trouble breathing during a seizure. This made me aware of how much more perceptive she is than we often realize.

For most of her journey, I thought that Avery didn’t really remember her seizures. When one took place, she knew something had happened and that she didn’t feel well, and as she got older, she would wake up at home or in the hospital after a seizure and wonder how she had gotten there. She had never really communicated an understanding of her seizures until recently.

As a caregiver and mom, I’m still not quite sure how to respond to this newfound play. While I don’t necessarily want to encourage it, I also don’t want to discourage it. I don’t want Avery to think there is something inappropriate or wrong with her or her experience.

Is it possible she is using her baby dolls to process all she has endured? If the rest of the family has needed to process what Dravet syndrome means for Avery and develop coping skills, why would I expect Avery not to do the same?

All things considered, I’m grateful Avery can communicate some of her own experience through her playtime with her baby dolls. While it might be a bit unconventional, I hope it’s a way she can talk about her fears and trauma, helping her to process all she has endured.

Note: Dravet 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 Dravet Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Dravet syndrome.