Faces from San Antonio
I was in San Antonio, Texas, last week, sharing Look, Cook, and Eat with attendees to the 23rd annual Chromosome 18 Research and Registry family conference. It was a pretty grand few days–not only did I meet some wonderful people and get to see their reaction to LCE (very positive!), but I also got to see first-hand what perseverance, love, curiosity and can get you.
Dr. Jannine Cody is the founder and president of the Registry. Her daughter, Elizabeth, was born in 1985 with an abnormality on her 18th chromosome. I think it’s fair to say that Elizabeth was the reason her mother, who has a Ph.D in Human Genetics, founded the Registry. Abnormalities on the 18th chromosome are rare, and when my sister, Jo, was born in 1976 with 18p- (which basically means part of her 18th chromosome is missing), there was very little information available to my parents. They really didn’t have a clue what to do or what to expect. I suspect that when Elizabeth was born in 1985, there wasn’t a whole lot more information available to her parents either. Dr. Cody stepped in and put her background in genetics to task. The Registry has done remarkable work finding answers, helping new parents navigate what is, at least initially, scary news about their baby, and promoting the promise that people with 18th chromosome abnormalities “can experience a full life full with all the possibilities” that any child enjoys.
The conference is a way for families and people with 18 chromosome conditions to get together and learn, support, and reconnect with friends–sort of like a class reunion. On registration day I set up the LCE booth (with make-your-own trail mix! A hit! Popcorn everywhere!), showed people the magazine, and got to know folks. Becky just graduated from college in Canada. Ellie from Illinois will start college in Iowa City at the Univeristy of Iowa REACH program in the fall. Torrie from Massachusetts has her own business making decorative “hearrings”–bling that hangs off hearing aids (she is hearing-impaired and was sporting a cool blue feather hearring herself). Supportive families and organizations believing in the possibilities of their kids–it’s quite magical and powerful when you get right down to it.
For the first time ever, I met people with the same condition Jo has. What amazed me was how similar they were to her, in mannerisms, physical characteristics, habits. Here’s Hannah–if I closed my eyes when Hannah was talking to me, I could’ve sworn it was Jo. They also look a lot alike. Not gonna lie–it was pretty freaky. But in a good way.
On Wednesday, I spoke at a break-out session specifically about LCE to a group of about 30 self-advocates. Let me tell you, there was no shortage of passion for cooking in the room! I learned that mushrooms are one of their least-liked vegetables (good to know!); that cutting themselves and managing the heat of the oven are two things that scare them most about cooking (noted!); and, that they’re very interested in learning about grilling (yes, grilling!).
I hope to be at the conference in Chicago next year. I want to see how these guys are doing. I want to teach a cooking class with them. Maybe Jo will come along. I hope she does. Because she’d like people and they’d like her.