By: Brooke (13) and Jill (15) Hauser
Our sister Katie’s story:
For the past 8 years of my life, my little sister Katie has definitely made the most impact. When she was 4 months old, I witnessed her first seizure and was terrified about her and her future.
When Katie was 4 years old she had a hemispherectomy on her right side of her brain and seeing her in the hospital was like holding back an entire storm in my mind. I watched Katie lay in the hospital bed at Ann and Robert H. Lurie’s Children’s Hospital in Chicago with half of her body paralyzed for the first time.
One of the most scary things was the unknown, and not knowing if she would remember me, be able to run/walk, or do other stuff that kids with a full brain could do. I was 9 and Jill was 11 when Katie first sat in a wheelchair after her surgery and I was just devastated. Over the past 4 years she has been living with a wheelchair since she cannot walk and continues to have seizures, but we are getting closer and closer each day! Each day that I wake up, I am excited to talk, play and laugh with Katie because she is a great sister who always has a lot of energy and loves literally everyone she sees.
Some days are really difficult because Katie has development delay and speech delay and her communication skills aren’t the same as a typical 8 year old. This is hard for me because I can’t have full conversations with her. I can still make jokes with her, sometimes she gets it and other times she doesn’t, but I know she’s listening to me. She also gets frustrated because she doesn’t always know how to communicate what she’s thinking or how she’s feeling and I feel bad for her because I’m sure that is tough.
While there are many difficult days that come with having a sibling with epilepsy and who is also disabled, there are many rewarding days too. I get to see the progress that Katie makes everyday while only living with half of a brain. It is really cool to see everything that she can do and accomplish with only one hemisphere. She works really hard on so many skills both in school and in therapy.
My favorite coping strategy is playing with Katie! When my sister and I hang out with or play with Katie, we treat her just as we would if she didn’t have epilepsy or a disability. We make her laugh really hard and her laugh is so contagious that it makes everyone around her smile. There isn’t a day that goes by that I don’t worry about her, but I know it’s going to be alright because the half of brain that she does have makes up a beautiful, smart, and strong 8 year old girl who is going to change everyone’s life because I know she has certainly changed mine.
Brooke and Jill Hauser are part of our new sibling support initiative and are volunteering their time to build this new program.