alt=an Elf on the Shelf in a wheelchair shares a wintry drink with a teddy bear and babydoll.

How My Elf On The Shelf Turned Into Something More

My daughter Stella is two and a half years old. Lately, Stella's development has revolved around exploration. Continuing to push her limits in her wheelchair, choosing (and demanding) her favorite books, but most recently, we are introducing her to the magic of the holidays.

Isolating to stay healthy

Like many other families, the holiday season has been difficult and stressful for us. Time apart from family and friends, both near and far.  For the second holiday season, we find ourselves in self-imposed quarantine, doing our best to stay healthy and avoid illness.

Stella was born in May 2019 and diagnosed with spinal muscular atrophy (type 1) at a month old. She was treated with gene therapy and was on a high dose of steroids which lowered her immune system.

Going to say, we've quarantined all of Stella's life. I don’t think we could have imagined two and a half years later we’d be where we are today.

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Making the best of special occasions

We’ve always made the best of being home for birthdays, holidays, and geneversaries (a fancy word for celebrating her treatment day).

This year is different than most. We went into the fall of 2021 with big plans for Halloween that quickly got derailed by RSV. With a heightened sense of caution, Thanksgiving flew by and before we knew it, November was over.

The Elf on the Shelf tradition

I was determined to bring the holiday magic to our home in December. Stella had a chance encounter with Santa and received her first Elf on the Shelf.

Initially, I didn't have any elaborate plans, but after the first night, I was hooked.

According to the internet, you either love or loathe this tradition as a parent. There is no in-between.

A coworker told me "you’ll be so bored by the second week, just watch." I know this wasn’t a challenge by any means, but that’s exactly how I took it.

Using the Elf for inclusivity and disability awareness

I quickly began adapting our elf, lovingly named Bean to have her own unique personality mirroring Stella's. Repurposing Barbie's wheelchair, painting it purple, and adding pink AFO braces that a friend made with their 3D printer. 

By day 3, I realized this fun little project was becoming something more for me. An opportunity to display inclusivity and disability awareness, something that is sorely lacking in our society.

My creativity ran wild as I added feeding tubes, K-Tape, and filled a syringe with white paint to represent melted marshmallows. A ramp was constructed from old amazon boxes and spray-painted silver.

Pure Christmas magic, but most importantly, inclusive. Soon I found myself creating reels to share on social media.

Quickly I found myself having more conversations about inclusion and disability awareness. I plan to continue with my creative streak, both in the remaining days before Christmas and in to 2022.

Representation and awareness

I'm hopeful these social media posts will continue to spark conversation, be widely shared and viewed, and play some small part in continuing to bring awareness to disabilities.

Don't hesitate to have conversations (or answer questions) with your kids when they are curious about a mobility aid. Foster these relationships young. We owe it to our kids to make this world kinder and more inclusive.

Representation matters for everyone. I'm grateful that today there are many toys, shows, and characters that are portraying disabilities. But there is so much work to be done when it comes to inclusion.

I am grateful that Stella has the opportunities she has to see this representation. I love that this silly little tradition makes her smile and I hope it brings a little holiday cheer to those near and far.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The SpinalMuscularAtrophy.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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