Personal Shopping Taught Me an Unexpected Lesson About Angelman Syndrome

Sabrina L. Johnson avatar

by Sabrina L. Johnson |

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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.

Personal shopping isn’t for everyone. Some people don’t want another person making choices for them. But as a parent who is always juggling a lot, it is helpful to have little things taken off my plate with the click of a button. When Juliana was younger, I made a lot of clothing and special needs items that I could never find. Sometimes, I would spend hours reviewing products or discovering that what I really needed didn’t exist.

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.

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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.


Note: Angelman Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angelman Syndrome News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Angelman syndrome.

Comments

Maryvonne Bittner avatar

Maryvonne Bittner

Thank you Sabrina for your down to earth, warm hearted and truthful posts. They are so refreshing and helpful.
You are a rare and inspiring person!

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Sabrina L. Johnson avatar

Sabrina L. Johnson

Gosh Maryvonne! You just made my day:). Thank you so much for taking the time to send this reply. Glad to read there are some helpful takeaways--that is always the goal. We all have great stories that can inspire others, so I'm happy to do my small part.

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