Thom and Karen Horsey remember their daughter, Liddy, who had the rare genetic disorder Cornelia de Lange Syndrome. Liddy died from an illness unrelated to CdLS just before her 9th birthday.
Originally aired April 27, 2007, on NPR’s Morning Edition.
Transcript
Thom Horsey (TH) and Karen Horsey (KH)
TH: Oh, I’m so mad that we didn’t take more videos now of her. You know, but who would know? It’s so funny to look at when she first started walking. What was she, 28 months, I think, when she first started walking? It was over two years, I know.
KH: Right, because they said that if she didn’t walk by 24 months —
TH: That she wouldn’t walk.
KH: That she wouldn’t walk. And, as usual, Liddy did things on her own time schedule and at 28 months remember she started to walk around the coffee table?
TH: Right, for hours and hours.
KH: And then all of a sudden she started to — she would just hold on and make circles and circles and bang things on that table. And then she started to take her steps and she was so happy. And that’s when I knew to throw out those stupid milestone books and that Liddy would just be Liddy and I would just be happy and rejoicing in every little thing she did and not to worry about those stupid books with their stupid milestones because you can’t live your life measuring your child against the norm.
TH: The thing I remember is how she developed and how she learned to walk into the classroom and went right to her chair and just sat right down. She pulled it out. She knew exactly what to do. And I don’t see Liddy not speaking as a loss because she was so expressive, I mean, she was always laughing and giggling and you know, it doesn’t strike me as — that was anything that was missing in a way because she was so just active and expressive and God she laughed so much, geez, you know.
KH: And I think that’s the thing I miss the most, is without speaking, how her soul could fill the house. And you just knew she was there.
TH: I could tell where she was by the sound of the door or whatever she was banging, or you know.
KH: If you think about it, Thom, in eight years, she profoundly changed who you and I are, and how we live our lives, as she was sitting here. What I would say is, thank you for making me a mom.
TH: Yeah.
KH: It was the greatest experience I’ll ever have.