When Grace Rooney was 2 years old, her older sister, Paige, was diagnosed with type 1 diabetes. Ever since, diabetes has played a role in the sisters’ relationship, and now Grace is sharing her experience in a new picture book for children called My Sister Has Diabetes: and How That Makes Me Feel.
Grace hopes her book will help kids know that they are not alone in their fears, concerns, and questions when a brother or sister has type 1. “Siblings have all the same questions their diagnosed brother or sister does, and they have many of the same fears. With so much going on in the family, sometimes siblings can feel overlooked. It is so important to remember that they need answers too,” Grace says.
Now 19 years old and currently in her first year of college at the University of Denver, Grace began working on her book at the tender age of 6. The project started as a way to help her process her emotions about her sister’s diabetes.
“I wrote most of the book the summer before I started first grade. Earlier that year, my mom and my aunt had had a conversation about how I was feeling frustrated regarding Paige’s diabetes. So my aunt suggested I write a book about my feelings. That summer my mom and I would go to a coffee shop once a week. We would talk about my different experiences with Paige and how diabetes played a part. I wrote down how I felt at those times.”
One experience Grace highlights is how diabetes sometimes made her feel like she was reversing roles with her older sister. “Paige was age 4 when she was diagnosed, and I was 2. We’ve always been very close… but because of the diabetes, sometimes I would find myself in the big sister role. For example, I learned early on the signs that Paige was becoming low. If I saw these, I knew to run and tell my parents. This wasn’t me tattling on Paige, it was more me having that big sister instinct kick in to keep my sibling safe. I wanted to help Paige with her diabetes and make sure she was healthy. That instinct remains the same today!”
According to Jennifer Rein, L.I.C.S.W., a therapist from Cambridge, Mass., it’s important to acknowledge that siblings go through their own emotional processing after their brother or sister’s diagnosis. “Siblings may find it very frightening to see their brother or sister in the hospital and learn about this disease called ‘die-abetes.’ They may worry that they will develop type 1 or think that something they did caused their sibling’s diabetes,” Rein explains.
As families continue to adjust to life with type 1, siblings can become jealous over their brother or sister’s need for additional care and attention from their parents, or feel left out if family conversations tend to center on diabetes, or even feel guilty that they don’t carry the same burden as their brother or sister.
Involving siblings in diabetes care tasks, giving them special helper roles, and carving out time alone together are all ways that parents can take some of the fear out of diabetes and help siblings feel accepted and appreciated.
As for advice to fellow siblings, Grace suggests not treating your brother or sister with kid gloves. “Do all the things you’ve always done together and learn how you can help your sibling so that diabetes doesn’t need to interfere. Give them support, but also try to find a balance between caring and nagging. For example, this past Thanksgiving, we went to a relative’s house for dinner, and Paige forgot her insulin at home. Instead of nagging her about forgetting something so important, I decided to go with her to pick it up because I didn’t want her to feel alone or left out because of her diabetes.“
Self-publishing her book, which is illustrated by Michele Mensa and available at online booksellers, represents a milestone for Grace. “The summer before my senior year of high school, I had a kind of bucket-list moment where I thought about all the things I wanted to do before I started college. My top item was getting my book published, because in all those years since I had been a frustrated 6-year-old, there still wasn’t a good resource for siblings. I reworked some of the writing, but for the most part I kept what I had written all those years ago.”
Intended for siblings and families to read together, Grace’s book has so far received glowing reviews. According to Children With Diabetes founder Jeff Hitchcock, My Sister Has Diabetes is a book that has been sorely missing from diabetes support libraries until now. As Jeff sums up, “With just 32 pages — 16 illustrations and 16 pages of powerful words — Grace Rooney shares the incredible range of feelings all siblings experience in a way that is both empowering and liberating.… [It] validates the complex emotions siblings experience and helps them realize that, like their brothers and sisters with type 1 diabetes, they are not alone. Highly recommended.”
Disclaimer: The experiences and suggestions recounted in these articles are not intended as medical advice, and they are not necessarily the “typical” experiences of families with a child who has type 1 diabetes. These situations are unique to the families depicted. Families should check with their healthcare professionals regarding the treatment of type 1 diabetes and the frequency of blood glucose monitoring.