Bonding With A Sister Who Doesn't Know Her Name
Growing up, Emily Krichbaum’s younger sister Michelle was diagnosed with Angelman Syndrome - a rare genetic disorder that causes severe developmental disabilities and neurological problems. Throughout her life, Emily found connecting with her sister - who is nonverbal - very challenging.
Emily sat down with her friend Danielle Turkovich in the StoryCorps recording booth to talk about Michelle and a surprising event that allowed her to bond with her sister.
Emily said it was frustrating growing up and seeing how other families interacted with each other. Because of her sister's disabilities, she couldn't have that kind of sibling relationship.
"I didn't have a sister that knew my name," Emily said.
Emily's family noticed something was amiss when Michelle was around 18 months old and wasn’t developing like other children. She wasn’t talking at all. It would be several years before they got the diagnosis of Angelman Syndrome.
When Michelle was 6 years old, the family decided to place her into a full-time care facility for her own safety. Emily accompanied her parents to visit in the beginning, but over time, Emily says she visited less frequently.
"I think to this day, it's really hard for me to go visit her, not because I'm ashamed of her or anything like that," Emily said.
While her parents visit regularly to make sure she is in good care, Emily says she is unsure about the value of her visits.
"She doesn't know who I am. So, it's that same thing over and over and it does her no benefit. And it kind of messes with me," Emily said.
Emily does recall one time when she was able to feel a bond with her sister. In 2009, Emily started running seriously. Not long after that, her father told her about an upcoming charity race. He asked her if she would be interested in running in honor of her sister.
Emily agreed, but what she didn't know was that before her race, there was a race for special athletes and her sister Michelle would be competing.
To Emily's surprise, her sister won the short race.
"It was the first time that I had ever felt like we were sisters... like we shared something," Emily said. "Like we both have these bodies that are meant to move and to run and that we're happiest when we're active in them."
After seeing her sister's performance, Emily was determined to do her best as well.
"I don't think I've ever run so fast or so free in my life. And Michelle and Emily won that day," she said. "I felt like that day was such a gift."
Turkovich asked Emily what she would say to her sister if they were able to have a conversation. "If your sister was in the booth, what would you say to her?" Turkovich asked.
"I think I would just tell her that I love her," Emily said.
Emily Krichbaum and Danielle Turkovich were recorded in the StoryCorps booth during its recent trip to Columbus.