The article, “Personal Shopping Taught Me an Unexpected Lesson About Angelman Syndrome” was originally posted on Angelman Syndrome News.
As the parent of a 12-year-old Angel, Juliana, I’ll take whatever help I can get to save time and extra effort. Long before the COVID-19 pandemic struck, I began relying on personal shopping and delivery services to help. To my surprise, a lesson in flexibility and acceptance has emerged as one of the biggest benefits.
Worth every penny
I became a smart consumer. However, for a person who doesn’t enjoy shopping, I longed for a way to pass this task to someone else. One year, after running around endlessly for school supplies, I took a cue from a friend. She got all of her supplies at a curbside pickup. I was in awe and vowed to try it.
I decided not to wait until the next school season. When I received a free delivery from a local store, my curbside cure was born. I began branching out to other stores and home delivery services.
At first, though, I grappled with the thought of adding another expense to our budget. Raising children is expensive. And the costs of raising a child with a rare disorder are mind-blowing. To make the services cost-effective, I have cut things in our budget to balance out delivery or service fees. The time and energy I save running countless errands provide some margin in my schedule to relax a little or focus on whatever new challenge has crept up.
I didn’t ask for that
Things seemed to be going well in my world of nonshopping bliss until I began to get substitute or wrong items. No matter how many preferences I would add to my order, I would sometimes get items that I did not want.
I developed a system for returning these items. Unfortunately, that got complicated. So I began to do something completely unorthodox: I tried the substitutions.
While some of the items have been things I may not add to my diet or household, one item has become one of my favorite things to eat. I would never have bought this snack. When the store is out of it, I’m truly disappointed. I’ve since learned not to become too frustrated when I receive substitutions. There might be a hidden gem in there so I work with what arrives.
The odd acceptance that has evolved from my personal shopping reminds me so much of my connection to Angelman syndrome. I didn’t choose Angelman syndrome, but it showed up in my life and I can’t send it back.
‘Surprise, surprise, surprise’
On the other side of things, I am becoming a better person because I am raising a daughter with Angelman syndrome. I’m more resilient than I realized. After coming face-to-face with Angelman syndrome, I decided that I wouldn’t be bitter about this disorder. Instead, I try to be better. I choose to work with what I’ve got.
Staying abreast of Angelman industry trends, and taking good care of myself and Juliana is a part of that. I started writing to put out more positive messages about special needs parenting. I’ve been writing “A Glass Half Full” for Angelman Syndrome News for a little over a year now. If someone told me 12 years ago that I’d be writing a column about Angelman syndrome, I couldn’t have imagined it from where I sat.
Like my shopping substitutions that show up unrequested, Angelman syndrome will keep surprising me. However, there’s something good coming from it, too, that I wouldn’t have discovered without it.