I Don't Know How You Do It

Love As An Action: The Lucky Few, with Heather Avis

September 12, 2023 Jessica Fein Season 1 Episode 34
Love As An Action: The Lucky Few, with Heather Avis
I Don't Know How You Do It
More Info
I Don't Know How You Do It
Love As An Action: The Lucky Few, with Heather Avis
Sep 12, 2023 Season 1 Episode 34
Jessica Fein

What does it mean to be human? Why is comfort not necessarily something to strive for? How is love more than just a feeling or emotion?

These are just a few of the topics covered in this enlightening conversation with New York Times bestselling author, podcast host, and founder of The Lucky Few, Heather Avis.

Get ready to have your heart touched and your perspective shifted as Heather Avis shares her extraordinary journey of love. In a life she never planned, Heather takes us through the unexpected twists and turns and the divine nudge that led her to becoming the mother of two children with Down Syndrome and a biracial daughter.  Heather's life and work is a celebration of diversity. She believes in a fully inclusive world where our differences are not just accepted but are celebrated, embraced, and encouraged ... a world where everyone knows an actual living person with Down Syndrome and understands what it means to be part of "the lucky few."

In this episode you'll learn:

  • Why a divine nudge can set us on a path that changes us forever
  • How storytelling can shift societal narratives
  • When we'll know that media truly embraces diversity
  • Why love is an action
  • How two opposing things can be true at the same time
  • What it means to be part of "The Lucky Few"
  • And so much more

Learn more about Heather:

Rate, Review, & Follow on Apple Podcasts

"This is my go-to podcast for inspiration and to discover new approaches to embrace the challenges in my life." If that sounds like you, please consider rating and reviewing my show! This helps me reach more people -- just like you -- find strategies and insights to do the things that feel undoable. Click here, scroll to the bottom, tap to rate with five stars, and select “Write a Review.” Then be sure to let me know what you loved most about the episode!

Also, if you haven’t done so already, follow the podcast. Follow now!

Sign up for my newsletter and learn more about these remarkable stories at www.jessicafeinstories.com

Order Jessica's memoir, Breath Taking: A Memoir of Family, Dreams, and Broken Genes

Music credit: Limitless by Bells

Show Notes Transcript

What does it mean to be human? Why is comfort not necessarily something to strive for? How is love more than just a feeling or emotion?

These are just a few of the topics covered in this enlightening conversation with New York Times bestselling author, podcast host, and founder of The Lucky Few, Heather Avis.

Get ready to have your heart touched and your perspective shifted as Heather Avis shares her extraordinary journey of love. In a life she never planned, Heather takes us through the unexpected twists and turns and the divine nudge that led her to becoming the mother of two children with Down Syndrome and a biracial daughter.  Heather's life and work is a celebration of diversity. She believes in a fully inclusive world where our differences are not just accepted but are celebrated, embraced, and encouraged ... a world where everyone knows an actual living person with Down Syndrome and understands what it means to be part of "the lucky few."

In this episode you'll learn:

  • Why a divine nudge can set us on a path that changes us forever
  • How storytelling can shift societal narratives
  • When we'll know that media truly embraces diversity
  • Why love is an action
  • How two opposing things can be true at the same time
  • What it means to be part of "The Lucky Few"
  • And so much more

Learn more about Heather:

Rate, Review, & Follow on Apple Podcasts

"This is my go-to podcast for inspiration and to discover new approaches to embrace the challenges in my life." If that sounds like you, please consider rating and reviewing my show! This helps me reach more people -- just like you -- find strategies and insights to do the things that feel undoable. Click here, scroll to the bottom, tap to rate with five stars, and select “Write a Review.” Then be sure to let me know what you loved most about the episode!

Also, if you haven’t done so already, follow the podcast. Follow now!

Sign up for my newsletter and learn more about these remarkable stories at www.jessicafeinstories.com

Order Jessica's memoir, Breath Taking: A Memoir of Family, Dreams, and Broken Genes

Music credit: Limitless by Bells


Jessica Fein: Welcome. I'm Jessica Fein, and this is the I Don’t Know How You Do It podcast where we talk to people whose lives seem unimaginable from the outside and dive into how they're able to do things that look undoable.

I'm so glad you're joining me on this journey, and I hope you enjoy the conversation. 

I am so excited to introduce you to my guest today, Heather Avis. I read Heather's book, The Lucky Few, a couple of years ago, and I was really struck by the similarity between her family and mine. Heather and her husband are adoptive parents of three children, and their family is multi racial and multi ability.

Heather is such a special person. She's a New York Times best selling author. She's written both memoir and children's books. She's a podcaster and a Down Syndrome [00:01:00] advocate working to create a more inclusive world where everyone belongs. She's also the founder of the Lucky Few, which is an invitation to build a kinder, more inclusive world through a combination of advocacy and activism, narrative shifting, and storytelling.

She's got so much to share, not only about her own journey, but also about things like what it means to be human, the myth of control, And why comfort isn't necessarily the thing to strive for. I loved my conversation with Heather and I hope you do too. Without further ado, here's Heather Avis.

Welcome Heather. It is so great to have you on the show.

Heather Avis: Thank you. I'm thrilled to be here. Thank you for inviting me. 

Jessica Fein: It's really my honor. People might not know, but when you write a book and you're trying to sell it to an agent and to a publisher, you have to put together a book proposal. And part of the book proposal are comps.

And these are books that are similar in theme to yours, and they kind of make a case [00:02:00] for a publisher that this is a legit idea and this will sell. And so your book, The Lucky Few was actually one of my comps. So it's really so exciting for me now to be talking to you on the other side of that whole book writing and book proposal process.

Heather Avis: Yes, I love that. I love these kind of connections. It's so good. I think you probably can relate to this as an author. Like, I know I'm putting my words out there to a whole community of people. And it is this surreal idea that there are people in the world who know a lot about me who I've never met. And I'm the type of who wants to know every person like Tell me your story.

Let me give you a hug. I want to know you. And I know that's unrealistic, but I love to make connections with people who know me. 

Jessica Fein: Right. It is such a funny thing, right? Because yeah, at this point, I obviously know so much about you and you don't really know anything about me. And that's how it is, you know, with memoir, I'm on the cusp, but mine doesn't come out until May.

So I’m still a bit of a mystery. [00:03:00] Anyway, one of the things I really loved was actually seeing your family on the cover of your book. Because even though your family looks, in certain respects, so different from mine, in other respects... It looks so much like mine. You, like me, grew your family through adoption, three kids, multi racial, multi ability family, which is all exactly my story.

And also, like me, this wasn't your plan. So how did you get from, hey, we're going to start building a family and let's have a kid, to creating your gorgeous family?

Heather Avis: Yeah, that's the question. Well, it started with infertility. I was 20 when I got engaged, 21 when I got married, which if my daughter came to me at 21 and was going to get married, I'd say, I don't think so, babe, but grateful.

We've been married 21 years. I'm so grateful for my husband and we grew together, but we started trying to have kids when I was about 24 and that was for about three years. And that's just a long [00:04:00] journey and story in and of itself. So we decided to grow our family through adoption. And wanted a healthy infant and then got word of a baby placed in our agency who had Down Syndrome and a long list of medical issues as well.

And we couldn't unhear that or undo that knowing about her. And so it's a very long story, but we ended up saying yes to her and I call her my scariest and best yes. Her name is Mason Hope Arpey Avis. She came home a little over three months old. And changed our world forever and for the better and really turned upside down our idea of what it means to have a family.

And what disability means and what it means to be a human. And she really started to shift ideas that we had around all of those huge life categories. And that then set us down a path that we never thought we'd go down, that we're so unbelievably grateful to have been pushed on to. 

Jessica Fein: And so now you have three kids.

How old are they now?

Heather Avis: So Macy is [00:05:00] Mason. It's M A C Y N. We call her Macy. She's 15. She just started high school. She's a freshman. And yeah, she has Down Syndrome, and she's just a rad kid. She inspired this phrase, “the lucky few.” So she's the inspiration behind the phrase, “the lucky few.” When she came home, I just felt overwhelmed with how lucky I was to get to be her mom and was so aware everywhere that we went that she was almost always the only person with Down Syndrome there.

And aware of the, maybe I was making it up, but aware of that most likely people around us would look at us and feel mostly bad, like not want that because I was that I would look at a family that looked like mine and be like, that's so awesome. I'm so inspired by that. Please, dear God, let that never be my story, you know?

So I was aware of all that and just felt so lucky to be her mom. So then I started using the phrase, the lucky few, which is now widely adopted by the Down Syndrome community. She had a lot of medical issues, so she was pretty all consuming the first two or three years of her life. And as those things started to resolve, as she got bigger and different surgeries [00:06:00] and medical interventions, we started the process for another child, went through the foster care system, and brought home our middle daughter, Trulie.

And Trulie is 12 now. She came home at five and a half months old. We live in California. All our babies came from California. And then Truly is multiracial, so she's Guatemalan and African American. So then we became a transracial family, and that's a whole journey in and of itself. That is just, I'll say this, it's unfortunate that it is this way, and two things can be true at once.

I'm so unbelievably grateful for this. I'm sad for so much loss for her in so many ways, and I'm so grateful that we are each other's family. It's complex. And then our son, August, a couple years later, we found out about him. And we got an email from a friend who had gotten an email from a birth mother who was seven months pregnant and found out in utero that the baby had a congenital heart defect and also had Down Syndrome and was looking to create an adoption plan.

So we got to meet her while she was still pregnant. And then August was born a couple of months later, and he is now nine years old and [00:07:00] in third grade. 

Jessica Fein: So, we have even more in common. All three of my children were born in Guatemala. 

Heather Avis: Oh, wow. 

Jessica Fein: How did you go from seeing other people and feeling like that's inspiring, but thank God it's not me, which I can totally relate to.

I was so uncomfortable around difference, that kind of visible disability difference. How did you go from that to, Oh, no, no, we're the lucky ones?

Heather Avis: Well, I think as it is for all of us in life, you can't know what you don't know. And that's why I think when it comes to relationships with anybody outside of our own identity, it's so critical to have those relationships because all of that unknown that becomes known and we can begin to see the full humanity and others.

Or especially people who are different than us in a variety of ways. So I have to just preface it, you can't know what you don't know, and that was me. And then it really was one step, it was just tiny steps, one after another. In my infertility journey, there was a lot of releasing [00:08:00] of plans. That, I think, was where I found more mourning and loss than I did in knowing we were going to have a child with a disability.

You talk to a lot of moms who get an in utero or at birth diagnosis for their child being disabled, and there's such a grief that they feel, and as grief goes, that can be short lived or it can take a long time, it's very complex and multifaceted, but that grief I really felt and dealt with and worked through in my infertility, it was a long journey for me that was full of grief.

So by the time we heard about Macy... I had already been three years down this idea that looking ahead more than an hour, you know, like looking ahead more than a day, looking ahead more than a step is not going to do me any good. And I can't actually control any of that. So like a release of all of that.

Which allowed me to just take one step at a time. So when we learned about Macy, while we didn't want a child with a disability, we couldn't unlearn who she was. We're people of faith too. So there felt like there was a divine nudge towards her. And so every step felt sacred and divine in that sense that we were walking towards [00:09:00] this idea and this life that we were terrified of.

Yet we were still going in that direction. But again, it was some days I felt like I'm not even putting my foot down today. This is just a lifting up of. And then I'll put my foot down and then I'll lift it up again and I'll put my foot down. And that then ultimately led us to our child. And then when she enters the picture, it's not just like a relationship with her, like the neighbor or my friend, she's my kid.

And that just changed everything. I think it was a long journey to go from this is not what I ever want for my life to feeling lucky to have that. And then it's also compacted into about three months. People who adopt know that it can be wait, wait, wait, wait, wait. And then it's like, Oh, you get a baby this weekend.

They're like, ah, so then in that sense, that part was a little more compacted. But I had already done the work ahead of it with my infertility. So it's a long answer, but I think it's as it is in life for all of us, I think sometimes that we don't expect, we feel out of control and then it's this opportunity to either lean into [00:10:00] it and be like, all right, I'm going to lean into this with fear and anxiety and whatever the feelings are that I'm leaning into it with.

And that lets you recognize that, oh, I actually don't have control over anything, right? Like I don't have control over any of it. That was all a false idea. 

Jessica Fein: It was a false idea. It's just holding on to this, like, anxiety, right? That's what you have, is you have the anxiety. We don't have the control. And I love the idea of a divine nudge.

That's so gorgeous.

Heather Avis: Yeah. I look at Mason. She's 15. And listen, it's not all like rainbows and unicorns. Having a disabled child in a world, in a society that rejects disability, is unbelievably challenging. And we've had a lot of hard in the last 15 years. And yet, every day I look at her, I'm not joking, every day, multiple times a day, and I think, you are such a gift.

Like, I can't even believe that I get to know her and love her. She's so rad. And she's so different.

Jessica Fein: Well, what's so rad about her? I'd love to know a little bit about her.

Heather Avis: Well, she's just pretty uninhibited. [00:11:00] Like, she's pretty good at just showing up in the world totally as she is. She's not apologizing for who she is.

And she's not asking permission to be who she is. And I find that really refreshing. And then she's like that when she meets people, too. She's real quick to want to love other people and not to walk in self conscious about the relationship. There's not that pretense with her. I love that about her. I find that inspiring every day.

Jessica Fein: You said she taught you so much about humanity. Is that what you mean or is there something beyond that? 

Heather Avis: Yeah, that's a part of it. Absolutely. What she really did for me is changed the game for me in that having a child with a disability as a non disabled person, I was face to face with the question of what makes a human have value and worth, what gives a human value and worth.

And as you grow up in a society and in a world, as I'm Caucasian, I have a college degree, I have an annual salary, I'm middle class. I have no [00:12:00] disability when you have all of those privileges that are just handed to you out of your control and you don't know otherwise and you don't have a lot of people in your life who are without those kinds of privileges.

Like you said, you can't know what you don't know, so you can lean into this lie that if you just do A, B, C or D, you have more value and worth or if you are these things, then you deserve more space in the world and no one's really saying that out loud, but I think that's how all of our society is built.

And so it's like this do more, be more, made for more, hustle culture that if you just do this next big thing, this one thing, and if you just work on this, then you now have what? More value and worth. And then you enter a child with Down Syndrome, and you have a child with an intellectual disability. And you're talking about a pyramid of power.

People with intellectual disabilities are on the bottom, bottom, bottom of the pyramid. And there's nothing she can do, no matter how hard she tries, to fit that mold. No matter what she does, nothing will ever get her there because she can't, and I'm not limiting [00:13:00] her. I'm not trying to like say your child can't do this, but there's a reality there with her disability.

And so then we can fight that or embrace who she is. And so that was the big thing I had to then look at her and think, okay, do you have value and worth? Do you need to do more to have more value and worth and ask that question? What makes somebody have value and worth in this world? What makes somebody human?

And I had to go on that journey and Mason was my guide. She was the one who helped me go down there. And for me, the answer is the heart beating in your chest and the breath in your lungs is what makes you a human being. And you have value and worth and deserve a space in this world. Period. Full stop. And that doesn't mean that I'm not going to help her be the best version of herself as I am with all of my children and as I am with myself.

But it really does strip back all of those layers and lies that who you are is not enough. You have to do these next things in order to be enough in this world. It's like, no, no, no. Who you are, as you are, is good and you are enough. Period. It's not up for debate or negotiation. This is who you are as a [00:14:00] person with Down Syndrome.

And so seeing that about her, then that's true for me. And that's really freeing. That's true about people I don't understand, you know, like people outside of my maybe cultural and ethnic identity or people outside of my gender or whatever it is. I can approach them as, Wow, you are a beautiful human, and I'm excited to get to know you, even though I might feel uncomfortable, or afraid of what I don't know about you, I can see that you are good, and you deserve to be here.

Jessica Fein: One of the things that you write about is that you have been living this very comfortable life, and really you expected that you would go on in this very comfortable way. And in fact, what you invited in and what you ended up seeking is a lot that at the surface seems uncomfortable. Maybe not for you, but for other people.

And yet, when I hear you talking, boy, you sound like somebody who knows who you are, understands what it means to be moving through this world. Comfortably, actually, by watching your [00:15:00] daughter do that. So what was that shift for you?

Heather Avis: Well, I would say that my definition of comfortable, it's what changed and my idea of what that means to be comfortable.

And that isn't what I want. That's not what I'm after. That's not what I'm seeking anymore. I do think that if I had said no to adopting Macy and another child into my life, as I'm saying this out loud, I'm an external processor. I'm like, all the trauma that comes with adoption, it wouldn't have been even an ounce easier, but I could have said, no, I could have chosen a more comfortable path.

And I think I would have been fine. And that's why I'm so grateful for the invitation of what Mason represents, what she's been that invitation of stepping towards that these ideas of undoing. In me, what I think it means to be comfortable or what I think it means to be human or all these big questions, I think you can go through life not asking yourself those things.

I think you can pursue comfort and ease. I don't know that that's bad, but I think that there's a better way. Maybe I even hate to say better because it's not about comparison, but there's a [00:16:00] way with more depth. And I am grateful to step towards that. 

Jessica Fein: Now your mission is to build a kinder, more inclusive world through a combination of advocacy and activism, narrative shifting and storytelling.

And wow, what a mission statement that is. Can you tell us about your advocacy and activism work?

Heather Avis: Yes, definitely. So the foundation for the work that we do at the Lucky Few really is storytelling, creating a platform for people to be able to share their stories. I have been so transformed by getting to hear the stories of people who are living a life that's so different than mine, that then creates a bit of a tug or a thread between that person and myself.

And helps me to step towards ideas that maybe I'm unfamiliar with our ultimate goal in all of life. Well, our ultimate goal for our kids for all three of them is that they step into a world where they're embraced as they are. And that just doesn't exist. And especially with kids with disabilities and with our kids with Down Syndrome, that's our ultimate goal.

And so in order for that to [00:17:00] happen, they need to be known. Because once they're known, that's the step towards embrace. And so the storytelling piece is huge for that. So we have created a project. Called this is down syndrome and we've gone around the nation and gathered people who have down syndrome and those who love them and done beautiful photography and told short stories and they're all archived on a website.

So people have access to the stories. You can see themselves in the stories, it's parents and grandparents and educators and cousins and friends and coworkers, all different kinds of people from all different walks of life who love a person with Down Syndrome and at one point didn't, you know, didn't know a person with Down Syndrome and then had the relationship and was transformed.

So we're trying to tell that story. That's the heart of our advocacy. And then I have written a handful of books, including some children's books that we've created some tools to go with the books so that they can get into classrooms so that we can start telling the story to younger kids because that is our future.

And the sooner you can hear about disability and quote, normalize it and see the humanity in a disabled person or a person with Down Syndrome, the [00:18:00] younger you are, the easier that is to make happen. And so I've written children's books and I travel and speak at schools and churches and events and things like that.

And then I have a podcast called the Lucky Few podcast that is all Down Syndrome specific. And we have to talk about anything that's going on in the Down Syndrome community and have experts on and that's what we're doing. 

Jessica Fein: I love that you pivoted to writing children's books as well, because you're right.

Reaching kids when they're young makes such a huge difference. What do you see as the kids start reading the books? And I know you do some work in the classroom. How do you see children opening their eyes to differences?  

Heather Avis: So my first children's book I wrote is called Different, A Great Thing to Be. And then my second one is called Everyone Belongs.

And I've got a great story. Last year, my son was in second grade and I had the opportunity to go once a week and do a read aloud with his class. And then I went on field trips and I volunteer as needed. So I got to know them really well. And my son with Down Syndrome was in a gen ed classroom. We were doing inclusion at his school.[00:19:00] 

One day, maybe halfway through the year, I had arrived at a venue where they were on a field trip. And one of his friends in his class ran up to me and he's like, Mrs. Avis. Oh my gosh. I couldn't wait to tell you. My brother has a disability. I'm like, whoa, Ruben, tell me more. And he's like, he has to get glasses.

Oh my God. And so it was just like, wow. I mean, we had talked to class specifically about disability, but mostly I'd read my two books, but I've been reading books with disabled characters. And just that these kids could see most of them had had this idea that disability equals bad totally turned upside down for them.

Jessica Fein: I love that story. Do you think there are more books now? Do you think this is becoming more common to have children's books or even shows or whatever with characters with disabilities? Because For example, when my daughter got hearing aids, we couldn't find a book about a child with hearing aids. You know, it was really, really hard.

And I've since seen some, but I wonder if this is something that has changed over the years since you got started with it. Have you [00:20:00] noticed that?

Heather Avis: tOh yeah, so much so. I have some opinions that people might not like, but I'll tell you them. Um, yes, it has changed so much. Macy came home 15 years ago and I remember going to Barnes Noble and looking for books about Down Syndrome and I could find one and it wasn't a children's book.

And now you can go to Barnes & Noble and you've got a wide variety of disabled characters sprinkled throughout different books. Some are the main characters. A lot of children's books now have at least a wheelchair user as like a background character. Um, you see kids with cochlear implants, uh, using canes with speaking devices, you know, with different birthmarks, limb differences, all of that.

We're doing a lot better. We have a long way to go. My two cautions that I have. One is, I think that we tend in the disability space to be okay with mediocre. And so when it comes to people with disabilities who start businesses, there's a lot in the Down Syndrome community who start businesses, which is amazing.

Like their branding and logo and marketing and design outside of the disability space. When you're starting a business, often you're going to professionals to create your branding and your [00:21:00] logo and your marketing, and you're creating a beautiful. brand. And there's this idea that it's like, well, I just went on clipart and pulled this out, that it's okay for spaces that serve disabled people to just be okay.

And I think that there is a trend when it comes to children's books, especially to just have okay illustrations that maybe you paid a program like to skimp instead of make it so that there's a publisher or whatever, who's going to hire this really great illustrator to do it justice. So there's a lot of disability books on the market picture books that I just think we're doing a disservice.

They're just okay. And disability deserves to be excellent in every regard. And that's one thing. And that's probably offensive to certain people. And real quick too, with self publishing, I think it's an incredible avenue and it also needs to be done excellently and people need to hire editors and experts in the field to help them do that.

It's not just write a thousand words, get some clip art, put a book out there. Like we need to do better. We deserve better. So I think, and then the other thing is I'm [00:22:00] concerned that the disability story being told is one in which we're perpetuating ableism because we're only celebrating disabled people who are overcomers and we're celebrating disabled people who can.

And writing books about like, look at this kid who can do these things. And I understand in a story that there's an all is lost moment and there is an overcoming for a main character, but often they're overcoming their disability and that's just perpetuating ableism. So I caution those kinds of books that are like, this kid has down syndrome, but don't worry because they can do these things.

It's like, oh no, we're not going to try to diminish their Down Syndrome or their disability. I don't know if that makes sense. Those are my thoughts. 

Jessica Fein: It does make sense. And I think another thing that's really important, which you touched on a minute ago, is having books that are not quote unquote books about disability or even books where the main character is disabled.

But just. in books that there are characters who have disabilities and that's not a part of the story. I was watching this [00:23:00] weekend, “You're So Not Invited to My Bat Mitzvah,” which is the new Adam Sandler movie. And there they are in Hebrew school and there's a girl in a wheelchair. And it was like a nanosecond.

She was just one of the kids in a wheelchair. And I was like, you know, paused my screen. I was so happy to just see that one of the kids who was hanging out was in a wheelchair. So I think more of that of just seeing and again, there was no storyline around her. She just was one of the kids.

Heather Avis: Yeah, I love that too.

There's a woman, her name is Gail Williamson, and she's a talent agent in LA for a disability wing of a talent agency. She actually started it. I would say her son is, has Down Syndrome, he's in his forties, maybe late forties. I would say Gail was one of the first trailblazers in the disability space when it came to media.

And she and I have spoken about it before and, and I was asking her, what's the future of disability in the media, like movies, commercials, television, all of that, and how there's been so much growth. And she said, we need to get to a place where the barista. has Down Syndrome, you know, like where the person in the background, they're just a part [00:24:00] of the world.

And we don't, we're not highlighting it. We're not making it like a part of the story that needs to be just the quote norm in all of media. Like that's the direction we're headed. So yeah, that's, that's interesting. He said that me too.

Jessica Fein: You wrote a blog called, If Isolation Were a Color.

Heather Avis: Oh, I did, huh? 

Jessica Fein: You did, you did.

You talk about how painful it was watching Macy trying to navigate the social dynamics. And you said it was a blow to your gut. And I think every parent can relate to this, right? Whatever the case, when you feel like your child is hurting or is being left out, it's like physically painful. And she talks about wanting to hang out with friends and you feel her loneliness.

It ended with you saying, we'll sit there together. alone. Oh my God, that was so stunning. In the essay, you question yourself and your own choices. Should I have done this? Would this have been different? And I think again, that's so common for moms in general. How do you get through those feelings of pain and doubt?

Heather Avis: At this point in my life, I just give it some time. I give it space. It needs its [00:25:00] space for me to feel it. And to sit in it. It's not about erasing it because it's real and I need to be able to have those feelings that are real and then I process it through writing before I write things. I try to sit on it for a while because I used to just write things out of those feelings.

And then I'd be like, Oh, I don't think I meant to say that out loud. I am an external processor. And I often will just talk and be like, Oh, I didn't realize I felt that way until now. And I've already said 30 minutes worth of whatever. So I give it some time. And then it's important for me to have one or two people who get it with me.

Who I can just share it with and they'll hold a space for it instead of try to fix it. 

Jessica Fein: Oh, I love that. It's so much easier to try to be a fixer. That's definitely my comfort zone and I have learned or am learning, I should say, that that's not always welcome and that it's not always possible to fix. Are the people that you turn to those couple of people in the community that you have created or are they people who were part of your life before?

Heather Avis: It's a little [00:26:00] bit of both. I mean, my husband is a really great person for that. And then I have a couple of friends, some in the Down Syndrome space, some not, who know and adore my kids and know where I'm coming from and can just sit in it with me. 

Jessica Fein: A lot of the people we talked to on this show, I don't know how you do it, are people whose lives have taken such different paths than they thought they were going to and then become guides for others as you have.

At what point did that transformation happen for you from this is what our life is going to be and it's exciting and it's totally different to I'm going to lead other people through, through your writing, your advocacy, your retreats, through so many things that you're doing. You're obviously a guide and a leader.

How did you make that transition?

Heather Avis: I actually have a moment in time and I write about it in the lucky few. I just remembered Macy came home in 2008 and Instagram started in 2010. And we jumped on board around 2011 and started posting a picture a day. Our account was called [00:27:00] “Macy makes my day,” which is no longer the account, but we posted a picture a day, just kind of giving people a glimpse into having a daughter with down syndrome and starting to talk about the lucky few as a hashtag.

And then that kind of blew up a friend of ours who was big on Instagram, shared our account. And we. Overnight got like 2500 followers. I mean, in the beginning years of Instagram, that was just an insane amount of people. And then that blew up into like 15, 000 followers. I'm like, I can't believe what is happening here.

So we just would share a picture day picture day. And then one day I noticed in a post. Someone had tagged a woman and said, Hey, are you familiar with this family? And then she responded back in the comments and said, Yes, this is why we're adopting Anna. I was like, what? Or Annie? And I dm'd her, direct messaged her and asked her like, Hey, can you shed some light on this comment?

I'd love more information if you're willing. She said, Yeah, I'm actually in China right now. My husband and I are adopting our daughter from China who has Down Syndrome. Because of your family, we were inspired by your story. It made me cry. And I thought, Whoa, I was just posting a [00:28:00] picture. Like I just didn't even think about the impact that it had on anybody else.

There was no goal for fame. There was no goal for any of it. I think the goal was to tell the story. The storytelling has always been there. And to tell the story around down syndrome, and maybe somebody will be less afraid of down syndrome because they can see this adorable little girl. Our life was still fun.

And our life is still good. And we still were cool. And you know, like, we still are all those things. So when I got that from her, I remember talking to my husband like this is a tool and a platform that I've been given that I need to be intentional with. I can choose now to be intentional with it and to start thinking more intentionally about the impact.

That every word I say and every picture I post is going to have, and that really shifted for me. 

Jessica Fein: Is he as involved in the advocacy and the activism and the storytelling as you are or is it kind of like that's your thing and he's more behind the scenes?

Heather Avis: It started out as my thing. I was a special education teacher and then Macy came home and I stayed home [00:29:00] and then social media happened.

I remember the first offer we got to do a paid collaboration too. I was like, what is this? This is amazing. Yeah. 

Jessica Fein: Can you tell people who might not know about that?

Heather Avis: Yes. Yes. It's how do we say this as uncomplicated as possible? Social media, we can have a whole podcast on this topic. It has been since its inception, I call it the wild west. It is constantly shifting and changing. Nothing is firm in its foundation. There's so much you can experiment with or not. I mean, 10 years ago, 15 years ago, let's say 10 years ago, probably there was no such thing or very few social media agencies. It's now one of the top paid businesses in the world.

It's a multi billion dollar business. We work with an agency that didn't exist 10 years ago, and they're bringing in Billions of dollars a year. And so it's all new, it's all new and wild. And everyone who works there is 20. They're not really, but it feels like it, which is great. 20 year olds are wonderful.

All that to say it started as one thing, the platform did, and it just continues to change and change and change and change. [00:30:00] I don't know what year it was, but I can see exactly where I was living and sitting when I got the email, but I got an email, it was probably five years after we started our account.

That was like, do you wanna do this collaboration with Target? They have a new line coming out called Cat and Jack and we'll send you clothes and give you $500. And I was like, are you kidding me? And they did. And then we said,

Jessica Fein: By the way, by Cat and Jack, we were big fans. I have so much Cat and Jack..

Heather Avis: Yeah. That’s the best. Yeah. So I, and I, it wasn't even in stores yet. I, whenever year it came out is when I got that email. And so that happened, that was our first paid collaboration. And then I was like, Oh, people make a living doing this. There's no consistency. There's no anything, but we have had years where we have been able to make a living wage doing collaborations with brands.

And so the way that it's been for me, we're very picky on who we work with. And it's twofold. We get to make money doing this. The other is brands are choosing our family to represent them, which means they're choosing a family that looks like ours to represent them. And that's huge. And so that's been a big, big motivator to like a big piece of the [00:31:00] advocacy is for a brand to say, Hey, we want your family to represent us.

Like, yeah, you do, of course, because there's been more families like this. So we've done, I mean, I could share too much, but it's been some years where it's like, this is incredible. I can't believe we get to do this and get, we get paid. And then years of like, there's no money coming in and this is ridiculous and the hustle of it and the game of it.

And it's constantly changing. And now there's reels and now there's threads and now there's all the things and it can suck your soul dry as well. 

Jessica Fein: And so back to the, I kind of interrupted my own question when I was asking about your husband. But is he into it?

Heather Avis: Oh, right. So this is all, it all will connect here.

So I was home and then full time and my husband was working, he had a full time job. And then there's a lot of little details and circumstances that happened. But ultimately, after my book, The Lucky Few came out in 2017, I started getting inquiries to speak places and social media was ramping up. And we had a video go viral during the promotion of my book.

Like in 24 hours, I got like 40, 000 new followers. And we just had [00:32:00] all these opportunities just coming at us and we were at capacity and we're like something's got to give and at the time, because we could see ourselves making a living doing social media and writing books and traveling and speaking. My husband is a graphic designer, so he left his job and came on because it makes sense.

He can do the website, he can do the marketing, he can do all of that. Easy peasy. And so he's been on with me full time since 2019. He came on full time with me and we've been doing it, whatever, four years now, the two of us. 

Jessica Fein: You lead these retreats for other moms with kids with Down Syndrome. What is the power in coming together this way?

And I should say, you know, we met through a mutual friend who was actually on one of those retreats. So I've heard her side of it, but what made you think that this would be a great idea to bring these moms together and what happens when everybody has that time together and away?

Heather Avis: It's called Lucky Momma's Retreat.

It started with a woman named Liz Plachta, who has a daughter with Down Syndrome, Ruby. And Liz started a non profit that raises money for scholarship funds for people with Down [00:33:00] Syndrome to go to have secondary school. She reached out to me. I was like, hey, I'd like to do this retreat. I have this place.

Would you want to come? This was in 2017. And I was like, oh my gosh, this is my dream. Do you have anyone helping you? She said, no. I'm like, can we do it together? She said yes. And so 2017, we invited 26. Women to come to this retreat center and did a weekend together. And we have, I think, a really good balance of fun and scheduled activities.

It's a place where everyone just gets to show up and be known and loved. There's like this really incredible magnetic energy between moms who get each other. And we're just not around a lot of people who have kids with Down syndrome. It's not very many people at all. So there's just like, Oh, me too. Oh yeah, me too.

Oh, I know you. Um, this is a place that we're going to be known and loved and cherished, and we get to cry about this thing and everyone gets it. And we get to talk about potty training and everyone gets it, you know, and we get to talk about congenital heart defects and everyone gets it. I think that what we've done is create a place where everybody can come in, shoulders down.

It's like, [00:34:00] Oh, I just get to be here and be me. And then we feed them good food and we have a lot, a lot of fun. 

Jessica Fein: It's such a gift. People can give themselves even to participate in this because it's so isolating, right? So much of the time when you're around people who don't get it. And so to be in a place where people just automatically, by virtue of the fact that they're there, they get it.

What an amazing thing.

Heather Avis: Yeah. Yeah. It's been a real treasure. We didn't know the first year how it would go. And it's been one of my favorite yearly activities. 

Jessica Fein: What advice do you give to parents who feel overwhelmed, who may be new to this journey and who are just feeling scared and overwhelmed? What do you tell them?

Heather Avis: I first want them to know that it's okay. Your feelings are normal and to make room for that and to allow those to be there. Like hold space for it. Don't feel shame. Don't try to wish it all away. Don't try to run away from it or bury it. You gotta sit in it. Lean in. My husband and I say all the time to each other about things.

And then also that it's not [00:35:00] forever and you don't have to do it alone. Even if the community is small, there is a community of people who do understand a lot of what you're going through and you don't have to go it alone. So find that person. Find those people, whether it's online through an online like Facebook group or it's someone in your community or it's someone across the nation, whatever it is, try to find that person, but it's not forever.

It's just a moment. You're stronger than you realize and you've got everything you need. You already have to do the next right thing.

Jessica Fein: Okay. Last question. You write that love isn't a feeling. Love isn't an emotion. Love is 100 percent an action. What do you mean by that? 

Heather Avis: I think love is too big to just be put into a space of emotion, like it's just a feeling.

When we truly love a person, we show that through action. So there's a commitment to my kids. When you adopt kids, there's a commitment to that. And that commitment and the actions that you take [00:36:00] towards your child are acts and steps of love. towards that child, even if the feelings aren't there. And if we're just going to allow love to be a feeling, then it's pretty weak.

And yeah, it makes it really fragile. And I think love is really strong. So when we leave it to emotion, it can easily die off and then you move on to the next thing. But when it comes to relationships with people, it's complex and it's tricky and it's hard. And in order for it to work, if love is there as action and not emotion, then you really can make it work.

So for my kids and anyone who's listening, who's adopted adoption and trauma and all of that, it's just real and it's hard and choosing love is not leaning into the emotion of it. It's the action of it. It's saying, I choose you and we're going to do this. I'm going to do this hard work. Yeah. And show you love by how I live with you, what I'm choosing to do instead of how I'm choosing to feel.

Jessica Fein: Well, I love that answer and I just resonate so much with your story and with everything that you're sharing. So thank you for taking this time and for telling us a little bit [00:37:00] about everything that you're doing. I'm just really grateful. Thank you. 

Heather Avis: Thank you for having me on. I really appreciate it. 

Jessica Fein: Here are my takeaways from the conversation with Heather.

Number one, you can't know what you don't know. And that's one of the reasons it's so important to have relationships with people outside of your own identity. Number two, when you have feelings of pain and doubt, give it space. It's not about erasing it because it's real. Which leads to number three, find the people you can share it with who will hold space and not try to fix it.

Number four, storytelling is such an important path to understanding and to embracing. And number five, think about love as an action. We show it by what we choose to do, not just by how we feel. 

I have so many exciting things coming up, so make sure you're subscribed to my newsletter, which you can find at jessicafeinstories.com.

And if you liked this episode, please go ahead and share it with a friend. Talk to you next time.