We were lucky to catch up with Heather Avis recently and have shared our conversation below.

Heather, thanks for taking the time to share your stories with us today Let’s start with the story of your mission. What should we know?

Fifteen years ago, with two teaching credentials under my belt, I left my job as a high school teacher and made the decision to be a stay at home mom. The bigness of the decision was made to feel even bigger because the baby I was leaving my work to stay home with came to me through adoption and had Down syndrome. The story to learning about my daughter with Down syndrome is a long one. While there are many details, highs and lows and magical moments connecting my daughter to her father and I, there was a looming darkness over making the decision to adopt her or not. We were excited to be adopting a baby but as soon as we learned about a baby with Down syndrome the people around us, societal messaging and our our ignorance made us afraid. Afraid to say “yes” to adopting this baby because Down syndrome is “bad”, Down syndrome could ruin our lives, Down syndrome is to be avoided at all costs. My daughter is now 15 years old and I can look back and thank the good Lord above that there was something in me refusing to let the darkness take over. The short version of the story goes; we brought out daughter with Down syndrome home on October 28th, 2008. She was four months old. And on that first night at home with her I will never forget holding her in my arms, this living, breathing, darling baby, and saying out loud, “huh? I can’t seem to remember what I was so afraid of.” The reality is, we live in an ableist society telling us Down syndrome and disability are bad, when my lived reality as a mother to a child with Down syndrome was the exact opposite. Fast forward with me if you will about a year. I was at the park with my daughter, who was not yet walking. As she scooted around the playground on her tush I looked around and was hit with the realization that she was the only person there with Down syndrome and that I got to be her mom. I felt overwhelmingly lucky. Lucky to be her mom, lucky to know, love and grow along side a person with Down syndrome. As I shared this sentiment with other families in the Down syndrome community they shared a similar story. A story where they once felt fear they now felt luck. The truth is, those of us who love a person with Down syndrome are few and we are very lucky. I started using #theluckyfew on my social media posts and it took off. A few years later my first book. by the same name came out and a few years after that I started my organization, The Lucky Few. Our mission is to shout the worth of people with Down syndrome and shift the harmful narrative around people with a Down syndrome diagnosis.

Heather, before we move on to more of these sorts of questions, can you take some time to bring our readers up to speed on you and what you do?

In 2008 when I became the mom to a daughter with Down syndrome my life changed forever and for the better. Bringing her into my life I quickly learned that the world was telling a harmful and false narrative about people with Down syndrome and I knew I needed to do something about it. It started out small, using the tools available to me at the time. She came home in 2008 and like so many stay at home moms in 2008, I started a blog. I shared about life with a child with Down syndrome, which looked a lot like life with a child. When Instagram made its way on the scene I committed to sharing a photo a day of life with my daughter as a way to tell a true story around living with Down syndrome in hopes of shifting the Down syndrome narrative. My instagram account grew in popularity and when I learned about a family who traveled to China to adopt a child with Down syndrome because they had be following along on my Instagram account and were inspired by our family, I knew there was more to what I was doing than just sharing a picture a day.

This moment opened up a door for me towards advocacy and I stepped through it. I began to write and post more intentionally. I took every opportunity I had to speak at community events and share our story. People in the Down syndrome community felt a deep connection to the words I was putting into the world about Down syndrome. In 2014 a publisher reached out to me and in 2017 my first book came out called, “The Lucky Few”. After that more opportunities to write and speak at larger national conferences and retreats opened up. I found myself meeting people from all over the world who loved a person with Down syndrome and could relate to the language I put around our community, feeling as though we truly are The Lucky Few. In 2018 I started a podcast, co-hosting with two other moms who are raising kids with Down syndrome and we are about to hit 1million downloads. I had my second book come out in 2018 followed by two children’s books in 2021 and 2022. Today, I am the mother of three children, two who have Down syndrome, and through my books, podcast, social media account, speaking engagements, and consulting, I run a global advocacy brand called The Lucky Few, committed to shouting the worth and shifting the narrative for people with Down syndrome in hopes of creating a more inclusive world where everyone belongs.

What’s a lesson you had to unlearn and what’s the backstory?

Before becoming a disability and Down syndrome advocate I had never heard of ableism. When I became a parent to a child with Down syndrome I found myself as a non-disabled member of the Disability community trying to advocate without realizing I had so much to learn and unlearn. Over the years I have learned that just because I love a person with Down syndrome does not mean the ableism in my own life magically disappears. Undoing and unlearning ableism takes a lot of work. It takes a lot of listening and learning and letting go of my ego. It’s a life long journey and one in which it is imparative I follow the lead of disabled people, including my children.

How about pivoting – can you share the story of a time you’ve had to pivot?

I think it is fair to say the moment of pivot in my career is happening now, in real time. In other words, I am the most unsure of what I am doing and what is next as I have ever been since starting The Lucky Few. An important lesson I’ve learned while raising my children and being an advocate is how to sit in the discomfort of the unknown. I think there is a overwhelming need for business owners/leaders and entrepreneurs to have a plan and to do everything it takes to hustle towards that plan when in reality, maybe the best thing to do in a moment of pivot is to take a beat and sit in the discomfort of the unknown. I truly believe that what is mine to do will find me and I will find what is mine to do. So, stay tuned…

Contact Info:

• Website: heatheravis.com
• Instagram: @theluckyfewofficial
• Facebook: https://www.facebook.com/TheLuckyFewOfficial
• Linkedin: https://www.linkedin.com/in/heather-avis-9165a0157/
• Youtube: https://www.youtube.com/channel/UC99_OFh29y9lVqZyHY2Xztw

Image Credits
Harlin Miller Jr. Joe Swanson