How parents can support the siblings of a child with epilepsy
My name is Hailey, and I am the Marketing, Communication, and Special Events intern at EFNENY. I’m also a sibling to a person with epilepsy. This blog series is for parents that want to know how they can support their own children who have a sibling with the condition.
If you’ve ever participated in Lemonade for Livy or the Kids Crew program, then you may know about my twin sister, Olivia (Livy), who is the inspiration behind these initiatives. Livy has had both epilepsy and cerebral palsy her whole life due to a brain malformation, and she needs 24/7 care from my parents. She has undergone two brain surgeries and is one of the bravest, most positive people I know. I have spent much of my life advocating on behalf of my sister through the Epilepsy Foundation and my family’s personal projects. I’ve spoken about her story to donors, legislators, news and radio stations, kids, and families beginning their own journeys.
My path has been highly influenced by her. Before going away to college, I spent nearly every single day being a part of Livy’s life whether it was caring for her, advocating for her and individuals like her, or just spending quality time with her. I love her with my whole heart, and I am happy to do whatever I can to support her. But it is also important to recognize that siblings of individuals living with epilepsy face their own challenges. I know that my childhood looked different than my friends’. To have been and continue to be the best sister, daughter, and person I can be, it’s been very beneficial for me to feel heard growing up. It has helped me to know more about Livy’s condition when I have been confused, to be listened to and comforted when I have been worried about her, and to be spoken openly with when I have had my own concerns. Epilepsy affects the whole family.
Siblings like me are a unique group. From a young age we can wear the hats of caregivers, comforters, advocates, and best friends depending on the situation. We are in a position where we can’t say we quite know what it’s like to live with epilepsy, but we’re close enough to understand what it feels like. I know how to identify the look in my sister’s eyes right before she’s about to have a seizure. I remember the names of all of her medications and doctors tracing back 10 years. I have stood with Livy during her struggles and celebrated her triumphs.
But we are also our own people trying to figure out our own lives right beside them.
Often, parents of children with health concerns must dedicate more time to helping the child, whether medically or emotionally. Though it can be unpredictable, it’s necessary and a fact of life. Other things may have to take a backseat due to doctors or hospital visits, an unexpected need for changes in treatments, and so on. Those looking in from the outside don’t always understand what it’s like. I have heard of fellow siblings’ understandable frustrations, worries, or feelings of alienation from their sibling. Sometimes they feel that they’re not as valued a member of the family or that the stress of life takes a toll on them too. However, it is possible to give each child in the house their due support, and with it they can grow up to become more empathetic, kind, and confident people. I am grateful that my parents put a lot of effort into this, and I am equally grateful for the connection I have with my sister. Everyone has a different experience and life circumstance, and a lot of it comes down to doing the best you can in the situation you’re in.
In my next posts, I want to share about what I feel is important to siblings, what my own parents did best for me, and the lessons I hope everyone can learn from. Thanks for reading!
