I never heard of FoxG1 until last year when a Rett doctor asked me if Katelin had it because she had Fox. He said they had their own club. The FoxG1 Club and of course the “fox” was something of a mascot. But, no she doesn’t. But Fox IS a part of her.
Fox has fans. People LOVE Fox. Often when we are meeting people for the first time, they see Fox and will outright say, “hey, there’s Fox, she must be Katelin!” Once, Dr. Tarquinio (from Boston) went to the European Conference. Katelin participated in a study done by Sally Ann Garrett on preserved speech, which was presented there, and her photo was included on a poster. Dr. Tarquinio, having seen Katelin only once at this time, stopped and was like “hmmm, that looks like one of my patients….wait…that’s Fox. It IS Katelin!” ha ha ha.
Fox’s life with Katelin began around 6 years ago when she discovered him at the Centerville Library. She began to seek him out every time we went, carrying him around the library and holding on to him for the whole time we were there. She began to cry when she left him. Finally, the librarians couldn’t stand it any more and said “take him.” Our lives have been improved ever since.
Firstly because, up until Fox came along, Katie had to have Pooh Bear all the time and Pooh is about 2 ft tall. This meant he had to go into the seat of the shopping cart whenever we went shopping and he was quite in the way when Katie was in her stroller, lol. So, a 14″ hand puppet was a big improvement convenience-wize. But, pardon the pun, Fox has come in handy.
He’s been Katelin’s silent, supportive friend through hospitalizations, sadness, temper tantrums, sickness. He was by her side and helped her be brave during the NNZ trial. He is her confidant and, I don’t care how strange it sounds, gives her unconditional love and she gives it right back. He is her rock and shoulder and friend.
Fox has had some unplanned adventures of his own. He’s been left at the library more than once, and I’ve gotten calls….”Fox is here, do you want to come and get him or shall we just hold him until tomorrow?” Once, Katelin was so distraught that she couldn’t find him, they had to go and open the library after hours so we could get him. And, the scariest of all…losing him in the Houston Children’s Museum- I went to the desk and made them contact all their employees to search for him…he was found in the “vet clinic” apparently someone thought he was there to fix his eye, which he lost to a sweet pitbull who didn’t know he really wasn’t just a chew toy. Ha, ha. Katelin has taken him swimming and showering and swinging.
People ask about Fox if they don’t see him, almost like everyone is petrified for Katelin should he be lost, as it seems he’s one of a kind now. I’ve searched for another, but he’s out of circulation and replacements introduced for the inevitability of “the end of Fox” have not garnered much response other than to be thrown or ignored. Fox, is an integral part of our family, and once when my son was very angry at Rett Syndrome and taking it out on Katelin, he knew what was the worst thing to do, he threw Fox outside and I could not find him. That just proves how much we all acknowledge the importance of Fox. Poor Fox, has been through a lot. But, it never keeps him from making Katelin smile.
More recently, Katelin was matched with a runner from IRUN4. Molly has embraced Fox as well as Katelin and oh, what a package she sent to make Katelin’s day.
And in a strange way, I hope for a Fox for everyone. Someone who will be by their side no matter what, who will listen to their cares and sorrows and love them no matter what. Some of us need a Fox more than others and he may go by other names, but in the world of Rett syndrome, a silent friend may be just the sort of friend that makes you feel not quite so alone.