A child who has never experienced an epileptic seizure may understand it first through a frightened adult’s reaction or a hurried explanation after an incident. My Shaky World, credited to Cassandra Potichnyj and Elley Ray Hennessy, offers another starting point: rhyme, imagination and a friendly invitation to enter a world that can otherwise seem unfamiliar. The book uses a fanciful seizure-fairy crew to turn a personal experience into a conversation that young readers can share.

Potichnyj has explained publicly that she was diagnosed with epilepsy as an infant, lived with the condition for decades and underwent brain surgery in 2022. The author’s website presents the children’s book as an effort to challenge stigma and help others feel less isolated. Its stated aims are educational and emotional, rather than a claim that a picture book can deliver individualized medical guidance.

Making an invisible experience approachable

Some conditions are not easy for outsiders to recognize until a visible event occurs. Epilepsy can be especially misunderstood when people assume every seizure looks the same. A picture book cannot contain the complete range of medical explanations, but it can start by showing that there is a human experience behind a frightening moment. The book’s cheerful language and visual imagination appear designed to lower the barrier to talking about that experience.

Children often learn through repetition and rhythm. A rhyme creates a pattern they can remember without turning a difficult subject into a lecture. The book’s publicly described seizure-fairy characters supply a playful frame. That fictional device should not be mistaken for an explanation of what biologically causes seizures. Its purpose is to open a conversation about a real condition, while accurate medical information remains the responsibility of qualified resources.

The difference between fear and understanding

Fear is a natural response to something unfamiliar, especially if adults themselves do not know what is happening. Yet fear can turn into exclusion when classmates or families decide that a child with a medical condition should not participate. Potichnyj’s public account describes experiences of being left out because others worried about seizures. Those memories help explain why a book addressed to children might focus as much on empathy as on physical symptoms.

The social lesson is important. Inclusion does not mean ignoring genuine safety needs; it means seeking informed ways to include a child rather than assuming exclusion is the only responsible choice. Families and educators may need individualized advice on activities, supervision and emergency responses. A story that invites peers to be curious and compassionate can support that conversation, but it cannot replace a specific child’s medical action plan.

Giving a child room to ask questions

Adults sometimes rush to offer reassurance, hoping to make a difficult topic disappear. A child may instead need simple, honest answers and permission to return with new questions later. The premise of My Shaky World suggests a shared reading experience in which caregivers can pause over illustrations and ask what a character might feel. The most useful discussions may involve friendship, uncertainty and how to respond when someone seems different.

There is also room to emphasize individual variety. A fictional narrator’s experiences should not be treated as the experience of every child with epilepsy. Some people have different seizure patterns, support needs or ways of discussing their condition. That diversity can be explained without diminishing the value of one person’s testimony. The book creates an opening; the adults and children reading together can supply curiosity and respect.

Rhythm, pictures and a serious subject

The author site advertises verse and fanciful adventure, a deliberate contrast to the clinical setting in which many families first hear about epilepsy. This contrast does not trivialize the condition by itself. Children often approach difficult subjects more confidently when humor or imagery allows emotional distance. A playful character can make room for concern without making the entire experience frightening.

Whether a given illustration or joke works for a particular child will depend on that child’s age and circumstances. The useful point is not that every conversation must be cheerful. It is that education can include warmth, rhythm and creative framing. Potichnyj’s stated intention is to reduce stigma. The book’s format suggests that empathy can be cultivated through storytelling, not only through factual lists or warnings.

Lived experience and the limits of generalization

The author’s own history gives the project a specific emotional foundation. Public materials describe early diagnosis, feelings of exclusion and later surgery. Those are her reported experiences; they should not be interpreted as a treatment prediction for anyone else. Medical outcomes differ, and decisions about seizure management require professional assessment. A child and their caregivers deserve language that acknowledges uncertainty without turning it into hopelessness.

The most constructive use of a lived-experience picture book may be to help readers feel that another person understands a situation they have been navigating alone. It can also help classmates realize that an episode is not the whole identity of the person having it. That social message remains valuable even when details differ from family to family. Representation works best when it encourages conversation rather than declaring one story definitive.

For caregivers, classrooms and libraries

The public concept makes My Shaky World a possible addition to settings where adults want to introduce disability awareness in a developmentally accessible way. Classrooms can use a story to discuss respectful questions and friendship. Families can read it together and invite a child to describe feelings they may not yet have a name for. Libraries can offer a book whose subject might otherwise be absent from familiar picture-book shelves.

Its role should remain clear. It is not a replacement for seizure-first-aid training or an individualized care plan. A school considering the book as part of an awareness activity should pair it with accurate information from established epilepsy organizations. Doing so preserves the warmth of the literary frame while protecting the distinction between a child’s imaginative encounter with illness and the practical responsibilities of the adults around them.

Who may appreciate the book?

Children who enjoy rhyming stories and imaginative characters may be drawn to the gentle adventure. Parents, teachers and other caregivers seeking ways to talk about epilepsy may appreciate its perspective from someone who has lived with the condition. The book’s strongest stated purpose is not to explain every symptom but to make a child who experiences seizures feel seen and a child who does not experience them more understanding.

Readers should evaluate its tone for the specific audience rather than assume every child wants the same approach. This feature introduces the verified book concept and author background without quoting unseen pages or inventing classroom results. Its central invitation is generous: learn enough about a condition to see the full person rather than respond only to a moment of fear.

A note on the creators

Cassandra Potichnyj and Elley Ray Hennessy are credited on the listed edition of My Shaky World. Potichnyj’s official website discusses the book’s basis in her experience with epilepsy and its goal of combating stigma. Further private health details or claims about treatment effectiveness have not been invented.