Siblings of children with chronic medical conditions often grow up with more patience, compassion, and empathy than other children. But they’re also at risk for anxiety, guilt, and isolation as well as other challenges.
Support groups where siblings can express their feelings can positively affect their well-being and self esteem. That’s why we’re working on a new initiative to support the incredible siblings in our community. Today, we’re introducing you to one of our volunteers leading this charge – Erica Hauser. Here, Erica shares why this initiative is important to her:
Hello, my name is Erica Hauser, I am the mother of 3 girls ages 15, 13 and 8!
I was introduced to the Brain Recovery Project by another parent in the Chicago area in 2017 when we were going through the evaluation and planning process that led to our youngest daughter having a hemispherectomy. The decision to arrive at a hemispherectomy as well as what life could potentially look like after such a huge surgery impacts the entire family. My husband and I always tried our best to keep our older daughters informed as best as we could related to what tests, hospital stays were coming up and we always included them in the “big conversations,” that revolved around surgery and the knowns and unknowns of going forward with such a huge surgery. Our daughter Katie had her hemispherectomy in 2018 and I have heavily relied on resources and information from The Brain Recovery Project as we navigate school, IEP’s, therapies, orthotics questions, the list goes on and on! However there was one area that I wanted to look deeper into that sometimes gets overlooked – support and resources for siblings of children who have had epilepsy surgery.
Our two older daughters have endured a lot since seizures began for our youngest daughter Katie in 2013 and I was certain that there must be other siblings out there on a similar journey who may have the same questions, fears and experiences that come along with having a sibling with special needs, a disability or a complex medical diagnosis. So in early 2021 I reached out to Monika Jones to see if the BRP had any resources or support for siblings. Fast forward a few months and we formed the Sibling Advisory Committee! I am excited to volunteer my time as a part of this extremely important initiative. It’s in the very early stages and we are excited to see it evolve and how we can fulfill the unique need of supporting siblings of children who have had seizures and/or epilepsy surgeries. I look forward to seeing where it goes and how we can help!
We’ll introduce you to the other volunteers in this initiative soon and share how you can get involved. Stay tuned for more information!
about the author
Audrey Vernick is our Director of Patient and Family Advocacy. She is the parent of a child who had hemispherectomy for seizures caused by stroke. She holds a level 2 certification in Special Education Advocacy Training from the Council of Parent Attorneys and Advocates and is certified by The ARC in future planning. She also serves on the International League Against Epilepsy’s Social Work and Social Services Section.