Before the real trick-or-treating began, we participated in the neighborhood trunk-or-treat. I haven't figured out why they have that event, when all the little kids still trick-or-treat on Halloween too. but far be it for me to break tradition. When we prepared for trunk-or treat, Nora threw us a curve ball, by refusing to be Joy again like she dressed at Disney World. Jaime scrambled to figure out another costume, literally two hours before the event. She [Jaime] ended up finding her old Bo-Peep costume from like 1997. Nora agreed to wear it, although it was a bit too big for her - not much though since Jaime is so tiny, and Nora is 84 feet long.
Halloween night though, Nora was Joy again. We made the rounds through our neighborhood. Our neighbors kept trying to give huge handfuls of candy to Nora. We politely said, "we just need one, thank you". I don't think they understood that Nora doesn't eat, nor does she even seem to associate candy, with food or for that matter, food with mouth. For Nora, Halloween is about seeing people and getting noticed. She seems to like the act of collecting the colorful wrapped things with funny names, like "nerds, kit-kats, and skittles". Nora never asks to taste any of them though. She is simply not interest and we seldom offer to let her taste. Personally, it feels cruel to have her taste something she can't swallow and although she usually says "Mmmmm", we don't really believe she enjoys the experience. Her body reacts though to the food in her mouth and her salivation increases. The gooey sticky saliva is difficult to clean out as well, further complicating things.
So as a new tradition, Jaime found something called the "Switch Witch". The witch, takes the Halloween candy (that she uses for fuel to run the witch world) and leaves behind toys. It was a great idea and got Nora pretty excited. Incidentally Nora got a Good Dinosaur and a Shopkins doll in exchange for her candy. Jaime also placed the teal pumpkin outside during trick-or-treating to signify we would give small toys out instead of candy for those who requested them. Like the peanut allergy kids. Jaime is freaking awesome.
There was one comment made by a child while trick-or-treating, that still bothers me. So I feel like I need to share it. Oddly enough, we heard the exact same comment last Halloween (different child though) that bothered us then too. The comment was: "Is she real?". We're not sure if Nora actually heard it again, but we suspect she did, and the idea of that makes me simultaneously angry and deeply sad. The comment wasn't said to be mean, but rather as a genuine question. ...but I'm not sure if that makes it easier or worse to digest.
Overall, Halloween is pretty enjoyable for Nora, and that makes us happy. Jaime and I loved Halloween so much as kids that we wanted to pass that along to Nora. I think we've done that. Halloween is also profoundly sorrowful, as we think about everything Nora misses.
goodentree /ˈgo͝odənˌtrēˈ/ noun
derived from our last name: Gooden and the idea of a family tree We came up with the name after we made the decision to start a family (have a child).
When Nora was born and diagnosed with the terminal disease SMA, her story quickly spread, and goodentree became established.
Follow us on