I’d only known her for a little over a year, but at ninety-something (I never did learn her exact age), she was my oldest friend.

And I think it’s safe to say she was also my fanciest.

The first time I saw Elizabeth was the day I checked my mom into memory care.

It was one of the hardest days of my life.

Parkinson’s disease and dementia had been slowly stealing from my mom, for years, really. From her. From me. From everyone who loved her. They had stolen her ability to walk. They had stolen her memory, her understanding of reality, and stolen her joy.

Pushing her wheelchair down those hallways on that first day, knowing I’d be leaving and she’d be staying there, felt impossible.

Much of that day is a blur now, but there are moments as clear as a crystal lake that remain etched in my memory.

One of those moments was seeing Elizabeth for the very first time.

My mom was feeling agitated and confused, while I was feeling sadness and utter disbelief at our situation, as we headed toward the activities room.

And there was Elizabeth, scooting down the hallway in her wheelchair, wearing a blonde wig, a sparkly headband, cat ears, and a bold red lip.

I was intrigued immediately.

She spent most of her days near the nurses’ station, the first place visitors saw after being buzzed through the locked doors. During my nearly daily visits with my mom, I’d almost always see Elizabeth before I saw anyone else.

“Liz,” she told me the first time we met. “That’s what my friends call me.”

So Liz it was.

I’d walk in, kneel beside her wheelchair until we were eye to eye, and every single time she’d smile and kiss my cheek. Even on the days I’d have to remind her who I was.

“Oh, Liz,” I’d say. “It’s me. Heather. We are very dear friends.”

Then I’d ask what she’d been up to.

Most days she was waiting for Joe Biden to pick her up for a date.

“Has he still not shown up?” I’d ask with complete sincerity.

“Well... not yet. But I sure hope he does,” she’d say, adjusting the purse that never left her lap and glancing toward the door.

I’d take her hand.

“Liz, if he hasn’t come by now, he does not deserve you.”

“You think so?”

“I know so! Let’s find you another man. What about Keith?” I’d point in the direction of a fellow resident sitting in his wheelchair, reading a book. “I’m pretty sure he’s single.”

She’d laugh and shake her head.

Then we’d sit quietly together, holding hands.

One of the things my friend Liz taught me is that when you’ve lived long enough, words matter a little less. Conversation matters a little less. Sometimes the greatest gift is simply sitting beside someone, gently patting each other’s hands, saying everything without saying much at all.

Bearing witness to a life at risk of being forgotten.

A couple of months before she passed, I joined Liz in the dining room while she ate lunch. When I pulled up my chair, I noticed she was glowing. I gave her a hug, and she kissed me on the cheek.

“Liz! You are glowing today. What’s going on?”

She looked to her right and left, as though to make sure no one was listening. Then she took my hand in hers, leaned in close, and whispered, “He came!”

“No way!” I leaned in closer and whispered, “You’re telling me that Joe Biden came and took you on a date?”

Liz blushed and nodded her head. She squeezed my hand, and we both squealed like two teenage girls.

“Liz!” I exclaimed. “It’s about dang time. Was he wonderful and kind?”

“He was a gentleman.”

Her starry eyes told everything she wasn’t saying.

“Oh, Liz! I am so happy for you.”

And I was.

I knew Joe Biden had not been to Blossom Grove. I also knew the story she told me was as real to her as if he had.

There’s something strangely sacred about loving a person who finds themselves spending the last of their days in a memory care facility. Coming alongside them in the world in which their mind has trapped them. Joining them in their new reality.

Because while they are no longer who they once were, they are somehow, still, them.

Always, still, holy and completely human.

Somehow showing up and spending time with my friend Liz, and my mom when she was there, is the reminder I needed to know this truth about them, an about myself.

Always, still, holy and completely human.

Liz died while I was in Spain.

I had told the staff that if the time came, I wanted to be there with her. I wanted to sit beside her one last time.

The text came anyway.

I was not there, and I was too late.

I didn’t know Liz for very long.

But I loved her.

She was my friend.

My oldest friend.

My fanciest friend.

My bold-red-lip, sparkly-headband, cat-ear-wearing, waiting-to-be-swept-off-her-feet-by-Joe-Biden friend.

I will miss her very much.

And every time I see a sparkly headband or a picture of Joe Biden, I’ll think of my friend Liz and how incredibly thankful I am that our lives overlapped.

Today I attended my final elementary school IEP meeting. I am not okay.

My son started at our neighborhood elementary school in TK (transitional kindergarten). I remember that first day like it just happened: holding his hand while walking the three blocks from our house to the school gate, our pace especially slow because he insisted on wearing the backpack that was nearly as big as he was. Walking him into his classroom. Watching him join the other kids on the rug. Holding back tears as I backed out the door.

He was the only student in his classroom with Down syndrome. It was also his TK teacher’s first time teaching a student with Down syndrome. Those two facts followed him from grade to grade: always the only student with Down syndrome in the class, and often the teacher’s first experience teaching a student like him.

In kindergarten, we learned the school was getting a new principal. Secretly, I panicked. We had already done so much work building trust and understanding, and every staffing change shifts the dynamic of an IEP team. I needed this new principal to see my son as an asset to the school, not a problem to solve or a burden to manage. I needed her to want him there. To celebrate who he was while also believing, just like with every other student, that he could continue to grow and flourish.

She was that and more.

We were all shook when by the end of kindergarten, we were sitting at home navigating a worldwide pandemic. He spent the first two-thirds of first grade connecting with his teacher and classmates through a computer screen at our dining room table. The final third of the year was spent back on campus, behind masks and plastic partitions.

I still look back at that season and think: what. the. heck.

Then, once he returned to school as a second grader, we hit a major bump. Things became really hard. But with the support of the principal and the openness of his first grade teacher, August went back to first grade — this time fully in person — and every year since, he has been surrounded by some of the greatest educators I could have hoped for.

It hasn’t been rainbows and gumdrops. Rainbows and gumdrops, while beautiful and sweet, are fleeting. They disappear quickly, leaving behind little to sustain you.

What we built over these years was more like a garden.

The ground had to be tilled. Trust had to be cultivated. Seeds had to be planted again and again with patience, consistency, and care. There were setbacks, hard seasons, and growth that sometimes felt painfully slow. But over time, roots took hold. And from those roots came something steady, meaningful, and deeply good.

For the past seven years, I have watched my son — and nearly every staff member who has worked with him — grow in ways that have left me breathless.

This morning, at his final elementary school IEP meeting, I sat around a round table surrounded by familiar faces. To my left was his occupational therapist. To my right, his fifth grade classroom teacher. Across from me sat his SAI (Special Academic Instruction) teacher. Also at the table were the school psychologist, the principal, his speech therapist, my husband, and of course, my son.

Toward the end of the meeting, my son said, “I just can’t believe how fast it’s gone!”

My eyes immediately welled with tears.

In a weepy whisper, I told the people around that table how proud I was of the work we had all done together. So very proud.

Anyone who has sat around an IEP table knows how rare this kind of team can be. A unicorn of sorts. Over the years we built trust. Real trust. The kind where I never had to question whether the people around the table saw the full humanity of my son with Down syndrome. The kind where he was genuinely viewed as an asset to his school community.

I know it is not always this way.

This year, I have sat around very different IEP tables for my daughter and spent the entire time wondering whether the people there even wanted her in the room. Wondering whether they viewed her as an asset or as a burden. Watching her humanity repeatedly called into question — often under the guise of good intentions. Watching my advocacy for her belonging and inclusion be misconstrued as harassment.

It is a wild thing to navigate these two opposite realities at the same time.

Which is exactly why I needed a box of tissues at today’s meeting.

Because today was not only a goodbye to elementary school. It was also a goodbye to what every child with Down syndrome deserves to experience in their neighborhood school.

As we prepare to leave, I find myself hoping that the roots my son planted there remain. That the work done over these seven years continues to shape the soil long after he is gone. That seeds of belonging have been scattered throughout that campus; into classrooms, into staff meetings, into future IEP conversations, into the hearts of educators who will someday welcome another child with Down syndrome through those school gates.

And when that child arrives, I hope they are seen immediately for what my son has always been:

not a burden to overcome, but a gift to belong.

My daughter also has Down syndrome.

Like many students with intellectual disabilities, she spends part of her school day in a separate “life skills” classroom where she receives the academic support she needs. But from the moment she entered high school, my husband and I wanted something more for her than access to academics alone. We wanted her to belong to the broader fabric of the school community.

So when we learned about a student-led club created to “build a bridge” between students with disabilities and their non-disabled peers, we were thrilled. This sounded exactly like the kind of thing schools need more of.

Then we learned how the club actually functioned.

The weekly lunch gatherings took place inside the life skills classroom, meaning students with disabilities stayed in their separate area of campus while non-disabled students came to visit them.

And then there was the prom.

Not the school’s actual prom, which came and went without much conversation about inclusion. This was a separate prom hosted later for students with disabilities during the school day.

I remember staring at the flyer trying to reconcile what I was reading with the club’s mission statement about inclusion and connection.

Because the more I observed, the more I found myself asking a deeply uncomfortable question:

What if some of our well-intended inclusion efforts are actually reinforcing the very separateness we say we want to eliminate?

As the date for the “special prom” got closer, more details emerged. Students from sports teams and clubs were encouraged to do promposals and attend the dance with students with disabilities. Everyone around me talked about how sweet it was.

And maybe it was.

But I also couldn’t stop wondering why the setup felt so one-sided.

Why weren’t students with disabilities also encouraged to ask someone to the dance? What if my daughter wanted to attend with one of her friends from the life skills class instead of being paired with a non-disabled peer? Why did the entire structure seem built around disabled students being recipients of inclusion rather than participants in mutual relationships?

That was the moment I began realizing something that has stayed with me ever since: inclusion can still be built upon a foundation of separation.

And I don’t think this school is unique.

In fact, I think versions of this are happening in schools, churches, and communities all over the country. Well-intended programs are often created by non-disabled people for disabled people, sometimes without much input from the very community they aim to serve. The goal is kindness. The intention is connection. And yet, somehow, disabled people still remain “over there.”

To be clear, I am not questioning whether programs like this are needed. The reality is that my daughter is a tiny minority within her school community. Her high school has roughly 2,200 students. Only a small fraction of those students have intellectual disabilities.

Teenagers are developmentally wired to seek belonging, identity, and connection with people who feel similar to them. One of the strongest predictors of friendship during adolescence is perceived similarity. Teenagers naturally gravitate toward people who share their interests, communication styles, experiences, and identities.

That means many students may never naturally pursue a relationship with someone like my daughter unless opportunities for genuine connection exist.

And honestly, that matters for everyone involved.

Because while adolescence naturally pulls young people toward sameness, it is also one of the most important stages of life for expanding empathy, social flexibility, and understanding difference. We do not become our best selves by remaining only with people who mirror us. We grow through proximity to people whose experiences stretch our understanding of the world and of humanity itself.

Schools play a massive role in shaping which instincts get reinforced. From preschool through high school, students absorb messages about who belongs, who is valued, who is separate, and who is seen as a full member of the community.

And the truth is, for most of our nation’s history, people with disabilities were intentionally separated from society.

Students with disabilities were not guaranteed access to public education until 1975. Before then, many were excluded entirely from their neighborhood schools. Even after federal law granted access, students with disabilities were often placed in separate classrooms and separate programs, physically present on campuses but still viewed as outside the core life of the school.

That legacy still lingers.

You can feel it in the way students with disabilities are often treated more like visitors than members. You can feel it in the way interactions with disabled students are frequently framed as volunteer opportunities or acts of service rather than ordinary friendship. You can feel it in the praise non-disabled students sometimes receive simply for spending time with disabled peers, as though basic human connection is somehow extraordinary.

And look, I know educators and students are trying. I have met incredible teachers and teenagers who genuinely care about building more inclusive communities. I have seen real progress. My daughter herself has benefited from people willing to move toward discomfort and connection.

But I have also witnessed how harmful it can be when inclusion efforts are built on top of old assumptions about separateness instead of fully confronting them.

Because there is a difference between welcoming someone and truly viewing them as belonging.

I also want to say clearly that I am not opposed to separate spaces.

My daughter’s life skills classroom exists to support her educational needs. It provides accommodations and instruction that help her access learning in ways that would be difficult otherwise. Separate spaces can be healing, supportive, and necessary for many different groups of people.

The problem is not separation alone.

The problem is when separation quietly becomes othering.

When separate spaces unintentionally communicate that disabled students are not fully part of the larger community. When inclusion becomes something done for disabled people rather than with them. When students with disabilities are viewed primarily as opportunities for generosity instead of as peers, contributors, classmates, teammates, artists, leaders, and friends.

After that first “special prom” — which, to be fair, my daughter genuinely enjoyed — I reached out to the club advisor and asked if I could meet with the student leaders. I shared my observations and asked questions about whether the structure of the club was truly aligned with its mission of building bridges and fostering inclusion.

I wondered why the club didn’t prioritize helping students with disabilities access the school dances and activities already taking place. I wondered whether hosting lunches inside the life skills classroom unintentionally reinforced division rather than connection.

My questions were not received well.

There was immediate defensiveness from some parents, teachers, and students. I was told I was making kind students feel bad about their efforts. People emphasized how wonderful it was that non-disabled students wanted to spend time with students like my daughter at all.

And that response, in many ways, revealed the deeper issue.

Because if we believe disabled students are already full members of the community, then inclusion should not be viewed as something to volunteer for. Friendship should not be viewed as service. Shared experiences should not require celebration simply because disabled students are present.

My daughter, students with disabilities, does not need to be someone’s good deed.

She needs what every teenager needs: friendship, belonging, mutuality, connection, awkwardness, laughter, heartbreak, inside jokes, community.

She needs to be seen not as an act of kindness, but as a person fully worthy of taking up space within the ordinary fabric of high school life.

This school year, her junior year, my attended her junior prom. She was the only student in the life skills program to attend the school prom. A few weeks before prom, when I was at school to meet with a teacher, I ran into one of my daughter’s classmates. We got to chatting about how it was his senior year and he was so excited to graduate. I asked if he would be attending his prom. He said, “no, I’m not going to the school prom, I’m going to go to the special prom.” And it hit me: the very thing created to promote inclusion was actually perpetuating separateness.

Maybe the question we need to start asking when we create programs meant to promote inclusion:

Are we helping students with disabilities belong more deeply within the community, or are we unintentionally reinforcing the idea that they exist outside of it?

Because students learn far more from the structures we build than from the mission statements we write.

I have something I need to say:

My 17-year-old daughter with Down syndrome auditioned for her school musical. She got a callback and then ultimately, she was not cast.

The news devastated her. And me!

And if I’m honest, I was surprised. Not simply because of her skill set, and not only because of her enthusiasm, though she brought plenty of both, but because she made the effort. She wanted to participate. She showed up and did her best in hopes of being part of something.

In a conversation with the theater teacher, I learned she was one of six students who auditioned and did not receive a role.

And that’s the part I keep coming back to.

I’ve been thinking and asking questions, and I find myself wondering: in a high school setting, especially in a non-competitive, performance-based program, what does participation get to look like? What’s the point of the program? Who gets to belong?

I think about those six students, and the thousands they represent.
Students who learned a monologue, a section of a song, choreography.
Students who stood up in front of their peers and did their very best.

That kind of bravery and commitment feels like it should count for something. For everything!

It’s been more than two months since my daughter learned she wouldn’t be part of the musical. Not a day has gone by that she hasn’t mentioned it.

“I’m sad I’m not in Curtains.”
“What are my friends doing? Are they at rehearsal?”
“Is there rehearsal right now?”
“I’m sorry I’m not in Curtains.”

The emotional weight is real. But it’s not just that.
It’s the relational toll of not making it, of being left out.
It’s what this kind of exclusion does to a teenager’s sense of belonging, especially in a season of life where belonging matters so much. Especially in a day and age when isolation is an epidemic and belonging is so hard to come by.

The bell rings at the end of the school day, and a group of her peers head off together to rehearsal. They are building relationships, working as a team, creating something together, solving problems, over coming their fears, trying something new, making memories, belonging to something.

And my daughter comes home.

She goes to her room. She turns on music, opens her window, and talks out loud as if she’s part of the cast. Somedays she practices the choreography she learned for her audition.

She has done this almost every day for the past two and a half months.

It’s hard to watch.

It breaks my heart.

There are so many conversations about the benefits of inclusion, and rightfully so. Study after study shows that inclusion benefits everyone.

But I’ve realized I haven’t spent as much time thinking about the other side of it:
What happens to the students who are not included?

If they are not at rehearsal after school, where are they?

For my daughter, the alternative has been a lot of time alone in her room.

And I find myself wondering about the other five students. The ones who showed up and tried. Where did they go when rehearsal started?

I don’t know all of their stories. But I do know many teens without after-school activities end up spending more time on screens, and over time, that can lead to more isolation, not less.

I care deeply about educators. Truly. You are doing meaningful, often unseen work every single day. My heart is full of gratitude for the educators in our country. I’m also a credentialed high school teacher, so I know firsthand how much thought and effort goes into creating programs and opportunities for students.

I also know that all of us, every one of us, are still learning. Still growing. No one is more committed to life-long learning than educators.

Which is why I’m sharing this.

Not as a criticism, but as an invitation to think together about what’s possible. To maybe shed a little light in the areas we tend to forget in the corners of the room.

If a school program isn’t yet a place where every student who wants to participate can find a way to belong, then my guess is this experience isn’t unique to my daughter.

So maybe the question isn’t simply, “How will this student affect the performance?”

Maybe it’s also, “How might participation affect this student?”

What might shift for them, and even for the broader community, if these programs were built on a foundation of belonging rather than performance…if belonging was part of the goal?

Because at the end of the day, these programs exist for students. These programs should exist for my daughter.

And when our teens go looking for somewhere to belong, I hope they can find it easily,
somewhere safe,
somewhere full of goodness,
somewhere like their school theater program.

We need to talk about fairness.

Here is what I know and what I’ve experienced when things are “fair”

Fairness is tidy.
Fairness is measurable.
Fairness makes adults feel like we’ve done our job and fans the ego of those who made the cut.

Fairness is “yes or no”, “right or wrong”, “in or out” “black or white”. It leaves no room for nuance.

Everyone auditions.
Everyone is judged by the same criteria.
If you can meet said criteria you are in. If you cannot you are out.

Fair.

Except here’s the problem:

Fairness assumes we all started from the same place. Fairness assumes some sort of sameness.
The thing about it is, we didn’t, and we are not.

Fairness, with all its good intentions, often protects systems more than it protects people.

And when someone says, “Well, it’s not fair if we include that person when they didn’t meet the same criteria.” what they’re often really saying is, “We do not see the benefit in adjusting the system.”

Now, let’s talk about Inclusion: Inclusion asks harder questions.

Inclusion asks:
Who did this process leave out?
Who was this designed for?
Who never had a real chance?

Inclusion ushers us into imagination.
It makes a way for creativity.
It requires us to hold discomfort without getting defensive.

Inclusion invites us into a way of being that is expansive.

Fairness says, “These are the rules.”

Inclusion says, “Let’s re-examine the rules.”

Fairness maintains order.

Inclusion changes outcomes.

If a child is excluded because of a skill they cannot change, and no alternative pathway is offered, that is not neutral. It may feel procedural. It may feel objective. But outcomes matter.

If the result is the same group of kids always getting access and the same group always being told “maybe next time,” or “what about the special program?” then the system is not inclusive and it will remain stale and stagnant.

Here’s what I believe:

It is not radical to ask for creative pathways.
It is not unreasonable to expect thoughtful accommodation.
It is not “special treatment” to remove barriers that never needed to exist in the first place.

It is justice.

And justice is rarely ordered and tidy.

So here’s my invitation to you:

This week, look at one system in your world — your classroom, your workplace, your team, your church, your community group.

Ask yourself:

Are we being fair?
Or are we being inclusive?

Who might be sitting just outside the door because the criteria never considered them? Or who might be sitting alone at home because no matter how hard they try, they never would have met the criteria? Are we better as humans, better systemically because we left them out completely?

And what would it look like — not to lower the bar — but to widen the doorway?

Because fairness is comfortable.

Inclusion is courageous.

And courage is what moves us forward.

I experienced something a decade ago that I cannot stop thinking about today:

In 2015, I followed a guide through the walls of Yad Vashem, the World Holocaust Remembrance Center in Jerusalem, Israel. I was in the Holy Land with a group of twenty-five women on a trip to learn about the conflict between Israel and Palestine from many different sides, perspectives, and lived experiences — ultimately to understand the importance of peace and how to be people who are pro-peace. It was an eye-opening and life-changing trip for me.

As soon as we walked through the museum doors, a necessary and appropriate heaviness settled in. The building itself is shaped like a long triangular prism that cuts straight through the mountain. You enter at one end and exit at the other. There’s no looping back, no shortcuts — no choice but to take the journey.

We met our guide, an elderly Jewish woman, and began moving through the remembrance center. The path carries you forward both chronologically and emotionally.

One of the first sections shows how violence didn’t begin with violence. It is filled with newspaper clippings, posters, children’s books, and radio broadcast slogans. The materials are bright and colorful. The language is simple and repetitive. At first glance, nothing looks overtly violent.

But what struck me that day — what has haunted me ever since and feels far too close to home now — is that what ultimately became the horror of the Holocaust began not with physical violence, but with stories.

Stories that flattened Jewish people into stereotypes.
Stories that blamed them for economic hardship.
Stories that labeled them dangerous, dirty, criminal, subhuman.

Hatred was wrapped in humor.
In patriotism. In law and order. In respectability.

It wasn’t screaming genocide.
It was calmly insisting: This is normal. This is necessary.

Our guide asked, “What do you notice about the material in this section of the museum?” After listening to our observations, she explained that the museum places this material early — before ghettos, before camps — to make something unmistakably clear: ordinary people were taught how to think long before they were asked how to act.

She went on to explain that the most dangerous thing about the propaganda was not that it convinced people to hate, but that it convinced them to stop questioning, to stop noticing cruelty, to stop seeing neighbors as neighbors. It made exclusion feel reasonable and civic-minded.

By the time physical violence began, the moral groundwork had already been laid.

With that understanding, we continued down the path before us — one whose outcome we already knew. And with each step I kept thinking, How could this actually happen?

The final experience the museum offers is the Children’s Memorial, dedicated to the 1.5 million Jewish children who were murdered during the Holocaust.

I followed a line of people into a dark, underground cavern. Almost immediately, my eyes adjusted and I saw what looked like thousands — even millions — of tiny lights, like stars. Each one represents a child who was horrifically murdered.

As I walked the dark path, I heard a recorded voice softly reciting a child’s name, their age, and their country of origin. It takes about three months for the recording to cycle through all the known names. In the stillness of the space, I could also hear weeping.

When we exited the cavern and our eyes adjusted to the light, not one of us was dry-eyed. Our guide gently gathered us together and offered a final word telling us:

Yad Vashem isn’t just documenting the past. It is issuing a warning.

When a group is consistently described as a problem, a burden, a threat — as less than fully human — history shows us where that road leads.

It begins with stories told to dehumanize a people group and ends with 1.5 million children murdered — while the world watched, or more often, looked away, delayed, or chose political convenience over human life.

I left Yad Vashem a changed person. Haunted. Acutely aware.

My mother is Jewish, making me half-Jewish. For as long as I can remember I have been drawn to the history of the Jewish people. I have this deep need or desire to read stories of the holocaust. I read my first book about the holocaust in late elementary school and have read dozens since. My personal connection to the Jewish people gave both the books I’ve read and my journey through Yad Vashem a deeply personal meaning.

But more than being Jewish, I am human.

I am a human whose ancestors had their humanity questioned — leading to horrific deaths and destruction. I am raising children who are part of people groups whose humanity has been, and continues to be, questioned — also leading to horrific deaths and destruction.

That proximity — that lived understanding — has led me to this moment in time.

A moment when our government is telling stories that dehumanize entire people groups. A president who, without shame and wrapped in humor and politics, uses name-calling to demean anyone who disagrees with him or threatens his image. The world’s most powerful political leader modeling for ordinary people how to view others as less than human.

We have too much information at our fingertips not to know that history will repeat itself if we allow it.

I share this story to implore us to be people who hold another’s humanity in the highest regard. To resist powerful narratives that stir up fear and hatred. To choose, again and again, to let our starting point be the full humanity of another person.

I have to believe that this simple — yet profound — act holds the power to stop history from repeating itself.

We can do this.
We must.

Signing off came with complicated emotions. Instagram is, in so many ways, the catalyst for my career as a writer. It’s how my literary agent found me. Its marketing power helped me land a New York Times bestseller, work with major brands on diverse and inclusive campaigns, and travel the country sharing my heart’s message. It connected me to some of my dearest friends. It fueled the flames of The Lucky Few becoming a worldwide movement. The connections I’ve made with strangers across the globe have shaped my life. So when I feel the urge to complain about what Instagram has become—not just for me, but culturally—there’s a voice that whispers, “Don’t bite the hand that fed you.” But what do you do when that hand becomes a bit of a monster?

The first few days after deleting the app, I still thought about it constantly. My thumb automatically tapped the empty space where the app used to be. I had been conditioned to think about what I should post, how to please the algorithm, and whether a moment was worth capturing for likes, comments, and shares. It was strange not to document everything. Weird, honestly—and revealing. But after a couple of weeks, the impulse faded. I enjoyed my family and my days without the pressure to curate them. My creativity returned and I found myself writing again. I created a TV series (a goal I’ve had for a couple years now) and wrote the first two episodes. I started a new book concept, wrote the first chapter and sent a proposal to my agent. My life felt like mine again.

I did miss knowing what was happening in people’s lives. But if I wanted to catch up, I could text or call. (And yes—I missed Saturday-morning yard sale adventures with all of you waiting to see my haul.)

A lot of what Instagram brought up for me pointed to deeper layers of healing. I started seeing a therapist this year and over the past four months, we’ve been working through several areas of my life, including how much of my confidence and understanding of my worth had become tethered to Instagram.

Can I be totally honest for a moment? It felt like Instagram used to like me. My followers used to like me. And Instagram told me so—through likes, comments, shares, link clicks, messages. When all of those began declining, I felt an all-consuming pressure to work harder to prove I was still creative enough, original enough, inspiring enough, smart enough, talented enough. I pushed myself to earn back the engagement that once came easily. The harder I hustled, the more depleted I became—and the numbers just kept dropping. I thought I needed to make sense of it. What I really needed was to tend to my own heart, mind, and soul. And yet, I know that continuing my work as an advocate, author, and speaker does require some presence on Instagram. So… now what?

I’m at the four-month mark and have begun dipping a toe back in. I wish I could say I returned with peace, clarity, and a healthier mindset. But almost immediately, I felt the familiar push toward comparison, scarcity, and self-doubt. I noticed that old sense of isolation creep in—the one that insists I must be the only person who feels this way when faced with the feed.

I wish I could say I’ve done all the work and healed all the wounds, but the truth is we all know too much about the harms of social media. The work required to have a healthy relationship with an undeniably unhealthy app is ongoing—and it’s work I’m committed to.

The studies are clear: social media isn’t good for our hearts, minds, or souls. And yet, it isn’t going anywhere. If I want to connect with the people who are there—which I very much do—then this is the tension I have to learn to live with: showing up without losing myself. Which is exactly what I plan to do. To whom it may concern: The Lucky Few is back on Instagram. 

The first time I was buzzed through the locked door of the memory care facility, Blossom Grove, was January 30th. The weeks leading up to that moment were a nightmare. After twenty years with Parkinson’s and towards the end with dementia (we don’t know how long but do know it was longer than any of us fully understood), my mom needed full-time, around-the-clock care. My dad had provided it with the kind of sacrificial love usually written into novels, but it had reached a point where he could no longer keep them both safe.

My dad and I met with a staff member for a tour. As the door clicked open, my stomach dropped. Chairs and sofas lined the walls, each holding someone slumped in sleep or lost in their own world. Others wandered the halls, blank-eyed or mumbling to someone we couldn’t see.

I understood then and can see more clearly now that the shock was less about what we saw when we entered the space and more about recognizing that my mom now belonged to this community of people whose minds had betrayed them. I picked my daughter up from school later that day and told her Honey-gram would be moving to Blossom Grove.
“Mom, are you serious? I’ve volunteered there. Honey-gram doesn’t belong there.”
Coming to grips with how dementia had reshaped the person we loved was painful for everyone.

After the tour, my dad signed the paperwork. My husband and I moved furniture and small belongings into an 11×13 room, hoping to make it feel familiar. That evening we wheeled my mom through the locked door—into a place none of us wanted her to be, yet the only place equipped to care for her. It was awful.

My mom lived at Blossom Grove for 45 days. I don’t exaggerate when I say those days were a nightmare. I won’t expand on the details, but I will say this: every day, I showed up. As she drifted further from the person we knew, people questioned why I kept visiting. If her mind was slipping away and she “wasn’t really my mom anymore,” why keep going?

I struggled to articulate it then, but I understand it now. She was still alive. She was still my mom. And being with her—bearing witness to her suffering—was an honor. Sitting beside someone so they aren’t alone matters, even when they are no longer the person you knew them to be.

My mom died peacefully on Sunday, March 16th, with my dad, my sister, my middle daughter, and me by her side.

That was almost nine months ago. And yet I find myself back at Blossom Grove every week.

Because while my mom suffered terribly, I also came to see the people around her. Lives being lived out behind a locked door because of a brain that deceived them. On my way to my mom’s room, I stopped to greet Rose and Stanley. I checked on Donna and Pearl. I helped Mary step on the imaginary insects only she could see. I complimented Miss Elsa on her wig and jewelry. My heart was drawn to every one of them. Each life deserving of a witness.

Recently I heard someone describe people with Alzheimer’s or dementia as those who are “held in the memory of God.” The phrase stopped me. My mom didn’t need her memory or her understanding to remain known and loved. All of it was held—by God. When I think of the end in this way I feel overwhelmingly honored to have chosen to hold the memory as well. And the friends I visit each week are all held. Some remember me. Others meet me again for the very first time. Even when memory slips, nothing is lost to God.

This week, as I stood in the foyer waiting to be buzzed in, I felt a sense of gratitude—something unimaginable that first day. When the door buzzed open, my heart lifted wondering who I’d see first. Who might recognize me. Who I’d get to meet again.

Showing up day after day for my mom, and now week after week for my friends, has changed how I understand this place. Behind the locked doors are human beings, fully alive. Hearts beating, lungs rising and falling. Bearing witness to them feels like holy ground—joining God in holding their memories, even when they no longer hold them themselves.

Seventeen years ago, after three long weeks on an emotional rollercoaster—deciding whether to adopt a baby girl with Down syndrome and a host of medical complexities—my husband and I held each other’s sweaty hands, walked into our adoption agency’s office, to pick up our daughter and bring her home.

The decision to adopt a baby with Down syndrome who also had a congenital heart defect and severe pulmonary hypertension was not easy. We didn’t go in pursuit of who she was “on paper.” In fact, I was terrified by the idea of her. The negative narratives about raising a child with Down syndrome or significant medical needs were loud and consuming. The more we learned about this baby girl, the more afraid we became of saying “yes.” And it didn’t help that people around us—some whispering, some not—kept asking, “What the heck are you doing?”

Honestly? What I knew to be true then has been true every second of every day since: God’s goodness, grace, and abundant love for Macy, Josh, and me is the only explanation for why we walked into that adoption office that day.

I’ll never forget buckling her into her car seat and sitting beside her in the back of our little Toyota Matrix. The drive home was over an hour. I never took my eyes off of her.

It took only a minute for the “scary baby on paper” to become a real, breathing, stunning, magnificent baby in my arms. My daughter.

That first night, I sat in the olive-green vintage chair in the corner of her nursery, holding all nine pounds of her as she slept in my arms. The fear was still there—because loving and raising a baby with immense medical needs is a scary thing. But louder than the fear, louder than the negative narratives about Down syndrome, was love. It was as though our hearts started beating in sync as I held her in my arms. I looked down at her and whispered, “Huh. I can’t seem to remember what I was so afraid of.”

From that moment on—and in countless moments since—I have marveled at the gift of being her mom. I am often brought to tears, overwhelmed by the reality that I get to know and love this extraordinary human.

This morning, I drove Macy to school—she’s a junior in high school now (what in the actual world?!). We blasted a hip-hop song of her choosing. Sometimes she lets me sing along; mostly I get yelled at for trying. While she belted the words and I nodded my head to the beat, I found myself, once again, blown away by the gift of her life. The gift of knowing her. The gift of being her mom.

And, as I have done every single day for the past seventeen years, I thanked God for His goodness—so big and abundant—that led Macy and me to each other.

Seventeen years ago, fear told me to say no.
But God gently ushered us toward each other, and Love told me to say yes.

That yes changed everything—not just for me, but for everyone who’s had the joy and privilege of knowing Macy.

It feels fitting that as we celebrate seventeen years with Macy, we’re also wrapping up Down Syndrome Awareness Month. Because when I reflect on her life—as a person with Down syndrome, as my daughter—I’m reminded that what we’re really after isn’t awareness.

It’s belonging.
Belonging to a family.
To a school.
To a community.
To each other.

It’s marveling at our differences instead of looking on in fear. It’s a life changed forever and for the better. It’s a life with Macyn Hope!

Did you know October has been Down Syndrome Awareness Month for more than 40 years? Back in 1984, advocates with the NDSS and NDSC worked with Congress and the White House to dedicate the month to celebrating people with Down syndrome and raising awareness. A little over a decade later, the Buddy Walk® was born—and today, hundreds of walks bring communities together nationwide each fall. While the U.S. celebrates all month, the world also joins together every year on March 21, World Down Syndrome Day (3/21, representing the extra 21st chromosome).

Over the years, the message has evolved: awareness ➝ advocacy ➝ full acceptance and belonging. Seventeen years ago, when Macy entered my life, I began shouting the worth of people with Down syndrome and joined wholeheartedly in October celebrations.

But it took me a minute to land there.

When my husband and I decided to adopt a baby with Down syndrome, we faced naysayers and a society steeped in a loud, negative narrative: that raising a child with Down syndrome would be too hard, and that having Down syndrome made a person somehow less human.

Those beliefs were not only false—they were harmful. They shaped decisions and expectations and looked right past a living breathing human.This false and harmful narrative severed the relationship between a child and her mother, influencing Macy’s birth family to create an adoption plan.

Macy having Down syndrome added a layer of complexity to our lives as new parents and a growing family that my friends raising kids without Down syndrome didn’t have to navigate. As new parents, we navigated congenital heart defects, surgeries, multiple specialists, therapists, and early intervention programs. But beyond logistics, we also had to navigate these narratives:

1. That she would never do certain things.
   
   

2. That her life was inherently less valuable.
   
   

That’s some heavy stuff! The shift in these narratives really began when parents were told to institutionalize their babies with Down syndrome. Some brave, wise families said “absolutely not!” They brought their children home, and in doing so showed that people with Down syndrome, when given the same opportunities as anyone else, proved the experts wrong. These families wanted to shout this from the rooftops! Parents began telling stories of what their children could do. Fast forward, social media amplified these stories: people with Down syndrome going to college, holding jobs, setting world records. The counter-narrative began to make itself clear: people with Down syndrome are capable of doing the same things people without Down syndrome can do.

For years, I championed this narrative, celebrating the ways Macy overcame her diagnosis. But as she grew, I realized a truth I hadn’t fully grasped before: Down syndrome also brings real limitations. There are things she can’t do because of her extra chromosome.

The narrative telling me she is limited because she has Down syndrome was not only accurate, it was okay. Getting to grow and learn alongside Macy has shown me that we are all limited. Limitations are not something to mourn or strive to overcome, they are part of the human experience. Our limitations don’t make us less, they make us whole. My daughter’s life, the lives of people with Down syndrome are pointing us to a deep, and profound truth: Who you are, as you are, is enough.

When we step away from the noise of the “can do” narrative we are able to clearly see that while people with Down syndrome amaze us every day, it’s not about what they can do—it’s about who they are.

People with Down syndrome do not need to achieve, overcome, or prove anything to have value and worth. Their very presence—breath in their lungs, heart beating in their chest, ability to give and receive love—makes them treasures. We are lucky to know them, to love them, and to celebrate them.

This October, that is the awareness I hope we bring: people with Down syndrome are a treasure, just as they are.

The closest the residents at Blossom Grove—the memory care facility where my mom spent her final days—get to politics is when my dear friend Miss Linda puts on a bold lip and waits for Joe Biden to come pick her up for a date.

I’ve been spending time at Blossom Grove for the past six months, and nearly every time I visit, Miss Linda is dressed to the nines, once again waiting for Joe Biden to sweep her away.

“I just think he is very handsome,” Miss Linda says, blushing.
“Did he show up for last week’s date?” I ask, very seriously.
“Well, he hasn’t shown up yet. I don’t know if I should keep waiting.”
“You wanna know what I think, Miss Linda?” I say, placing my hand on hers.
“Well yes. What do you think?”
“I think if he had any sense about him, he’d never stand you up. Stop waiting around for someone who doesn’t see what a catch you are.”
Miss Linda smiles and squeezes my hand.

Blossom Grove is an interesting place for me. It’s where I endured some of the hardest days of my life—watching my mom fade further and further away, until I was lying beside her when she took her last breath. It’s where I had to lean fully into who God made me to be, making impossible decisions not based on others’ opinions but on my own convictions.

For the six weeks my mom lived there, I visited every single day. Each visit teetered between horrible and holy. The ways dementia stole her were more painful than I can describe. And yet, to sit among people our society has largely given up on—including my mom—and to remind them of their worth was a holy gift. It was an invitation to bear witness to lives still vibrant, still valuable. It’s a gift I’ve continued to accept even after my mom passed.

Every week, when I’m buzzed through the locked doors into the heart of Blossom Grove, I encounter a threadbare truth and a profound simplicity in the way the residents go about their days. At first, I couldn’t see it. When my mom moved in, all I noticed was heartbreak: people forgotten by the world because their minds had betrayed them. The whole place broke me.

But as the weeks passed, I began to see more. I noticed how content the residents were to sit listening to music, waiting for the next meal. I saw the depth of friendship as they shared snacks, offered advice, and pushed one another’s wheelchairs. Slowly, they became not just residents, but friends who shared their lives and stories with me.

Izzy, once a labor and delivery nurse, always laughs when I ask about her work: “All I have to do is catch ’em!”
Rose, a stoic former Army sergeant, offers just a small grin and nod when her service comes up in conversation.
Martha tells me every time about how her mom and sister fled her abusive father in the middle of the night, driving across the country for a fresh start in California.
And Doc—who insists on the name because of his years as a successful physician—fills every room with jokes and laughter.

The Friday after the school shooting in Colorado, and the death of Charlie Kirk happened on the same day, I went to Blossom Grove for “happy hour” and karaoke. The news outside and the political divide felt unbearably heavy, but inside I joined a room full of people from vastly different walks of life. Men and women who once held strong political convictions sat side by side, singing the Beach Boys’ Wouldn’t It Be Nice. People who might never have shared a meal years ago now laughed and sang together.

Because in the end, what matters is not politics. What matters—at the end of a day, and certainly at the end of a life—are the things that make us human: our longing to be seen and known, to belong to a community, our need to be cared for and to care for others, and ultimately, love.

My hope and prayer for our nation right now is that more people would visit a place like Blossom Grove. That we’d gain some perspective. That the fog of hate would lift so we could see one another’s humanity again.

And while I won’t tell you my political opinions on Joe Biden, I will tell you this: I am team Miss Linda, now and forever—and Joe Biden doesn’t know what he’s missing.

When Instagram launched in 2010, I wanted nothing to do with it. Partly because I was busy raising my baby girl, but mostly because my rebellious spirit didn’t want to give in to the latest craze.

Two years later, at our local Buddy Walk celebrating people with Down syndrome, a friend told me about her Instagram account, @TunaMeltsMyHeart, featuring her rescue chiweenie with a unique face. Tuna became an internet star, and that day my friend convinced me to start an account to show the world what it’s like to love someone with Down syndrome. That December, @MacyMakesMyDay was born.

With a shoutout from @TunaMeltsMyHeart, our account quickly grew. That was 13 years ago.

So much has happened on the platform as well as in our lives over the past 13 years. Doors have opened that likely would not have otherwise. Starting my instagram account changed the trajectory of my life completely.

For starters, Instagram has been the birthplace of The Lucky Few—first a hashtag, then a book deal, a business, a podcast, and ultimately a movement in the Down syndrome community, shifting the way people think about Down syndrome. It’s where “Shouting Worth,” “Shifting Narratives,” and the three-arrow tattoo went viral. It’s the reason those three arrows are now considered the symbol for Down syndrome! It’s connected me to lifelong friends and tens of thousands of people in deeply meaningful ways.

Instagram opened the door to my first book deal, helped land a New York Times bestseller, and brought brand partnerships that took our family across the country and beyond. For years, it was even our main source of income. I am humbled and grateful for all it has given us.

But there’s another side.

We don’t have to look far to find research showing how Instagram can harm mental health, body image, and well-being. The platform fosters social comparison, unrealistic ideals, and the need for constant validation. The algorithm favors distressing content, amplifies comparison, and creates addictive use patterns.

I think it’s safe to say, all of us who use the platform can nod our heads in agreement because we have personally experienced the negative effects in one way or another.

After 13 years, I feel this every time I log on. To get really honest and vulnerable here: the decline in engagement on my posts feels like personal rejection—tapping into old wounds. It’s exhausting, like running on a hamster wheel, hoping people will care about the work I’m pouring into the world, and often being met with silence.

So, here’s the truth: I need a break.

I’m scared to take one. I still want to write books people read, host a podcast people listen to, and collaborate with brands that value a family like ours. I still want to shift narratives so all kids belong. But I worry stepping away from Instagram, even if for a short time, will make me irrelevant.

Still, I know I need space to create without chasing likes, comments, saves, shares or algorithms.

If you want to stay connected, and I hope you do, I’ll be sharing my writing and advocacy work on Substack, important Lucky Few updates in my weekly newsletter, and the podcast will continue as always.

Connecting with other people in the Down syndrome and disability community has been one of the greatest gifts of my life. In hopes of continuing to connect with and support other families, I will share my email and phone number:

heather@theluckyfew.com or text/leave a voice memo at (909) 725-3874. Please do reach out.

My hope is to return to creating simply because it’s what God made me to do—and because it’s good for my soul.

With love,
Heather

As if in slow motion, my daughter tugged on my arm, pointed, and asked loudly, “What’s wrong with her face?”

I flushed with embarrassment, but replied calmly, “Oh honey, nothing’s wrong with her face. Everyone’s different, and that’s what makes humans amazing.” Satisfied, she went back to observing the world around her.

Later that afternoon, I invited her to sit with me on the couch. “Remember the woman we saw today—the one with the mark on her face?” I asked. “I thought we could learn more about what that is and why it happens. Want to help me look it up?”

Excited to spend time with me (and my laptop), she scooted in close. Together, we did a few simple searches and learned about port wine stains.

That moment could have been an awkward one—a memory wrapped in shame—but instead, it became an opportunity for learning, connection, and deeper empathy. Since she could speak, we’ve talked openly about noticing, celebrating, and embracing the differences we see in ourselves and others. And at three years old, my daughter chose curiosity over judgment.

That’s what I adore about young children: their natural instinct is to wonder, not to judge. They begin with questions, not assumptions. And when we answer those questions with honesty and respect, we communicate two essential truths—that their curiosity is welcome, and that the people they’re curious about are worthy of dignity and understanding.

But not every child gets that message.

Around the same time, I had another experience—this one, far more painful. I was in a large furniture store with all three of my children. My oldest, who was six at the time, has Down syndrome. As we waited in line, a young girl behind us pointed at her and asked her mother, “What’s wrong with her face?”

I turned, ready to engage with kindness and openness, hoping to offer a meaningful moment of growth. But the mother, looking horrified, shushed her daughter, pulled her away, and quickly got in another line. My heart sank.

Not only did my daughter witness the entire interaction, but that little girl was left with a message: that people who look like my daughter are “too different” to talk about, let alone know. I leaned down, took my daughter’s face in my hands, and whispered, “Nothing is wrong with your face. It’s spectacular.” Then I kissed her on the forehead.

That shift—from curiosity to judgment—isn’t natural. It’s learned. Children absorb our responses. They pick up cues from how adults behave, from what the media says is “normal,” from the absence of diversity in their environment, and from peer dynamics and pressures. They learn who is celebrated—and who is avoided.

As a mother to three children—two of whom have Down syndrome, and one who is a different race than her father and me—I’ve learned that building a culture of belonging starts not in the classroom, but in the living room.

It begins when my babies play with toys and read books that reflect a full range of human differences—different races, abilities, languages, and cultures. It grows when we watch movies with characters who think, move, and live differently than we do. It deepens as we build relationships with people outside of our immediate identity bubbles.

And while I can’t control peer pressure or every social influence, I can make sure my kids are grounded in a deep belief: that every human—exactly as they are—is valuable. That difference is not something to fear or fix, but something to honor and celebrate.

It’s why I write the books I write—for parents, for teachers, and for kids. They’re tools to spark conversations about difference and belonging, right there on the couch or snuggled into bed. They’re resources to raise curious kids, not judgmental ones. They’re starting points for families who want to build homes where everyone belongs.

Because when my children feel uncertain about their own differences—or unsure about someone else’s—I want them to know this: when they step into our living room, they’re stepping into a place of curiosity, not shame. A place where questions are welcome. A place where everyone—truly everyone—belongs.

Separate spaces can exist within belonging. In fact, sometimes they must.

For many people, separate spaces are essential — not only for safety or comfort, but also for thriving. They can provide the environment a person needs to become their fullest, truest self.

But here’s the tension:
Separate spaces can honor, or they can “other.”

Let’s look at how separate spaces, when built upon a foundation of belonging, can honor.

When someone’s unique needs are seen not as something to fix, hide, or ignore — but instead something to support — then a separate space becomes an act of honoring.

We see this in:

• Black Student Unions

• PRIDE clubs

• AA meetings

• Moms who gather because they’re raising kids with Down syndrome

These are spaces that exist within the larger community, but they create room for a particular group of people to be fully seen and supported. That’s not exclusion — that’s belonging with intention.

The key is this:
Separate spaces can foster belonging — when it’s understood that the group belongs to and is valued by the whole.

Let me say that again:
Separate spaces can still foster belonging — when it’s understood that the group belongs to and is valued by the whole.

Problems arise when separate spaces are created for a group without their input — usually out of fear, ignorance, or a well-intentioned but shallow understanding of their lived experience. These spaces often “other” the people they’re meant to serve.

History gives us the most extreme and painful examples — like the Holocaust or Japanese internment camps — where entire people groups were forcibly separated and dehumanized.

But the pattern of “other” continues in more subtle ways today.

My eldest daughter is part of the Life Skills program at our neighborhood high school. It’s designed for students with intellectual and multiple disabilities. The smaller class sizes and high student-to-adult ratio provide the support she and her classmates need to work on academics at their own unique level. There’s something truly valuable about programs like this existing — they offer real, individualized support.

But here’s where things go awry:
Since my daughter began attending this program, we’ve noticed a troubling pattern. Very few of the students in Life Skills spend any part of their day outside of the program. When we’ve advocated for our daughter to participate in general education classes or school events, she’s been able to — but only because we made it happen and only because of the few teachers at the school who are also advocates of belonging.

Over her year and a half in this separate Life Skills space, it’s become clear that there’s no real expectation for these students to participate in the broader school community. No one says it out loud — in fact, when I’ve asked why things are the way they are, I’m told, “Your daughter can go to any dance or event she wants.”

And while that may technically be true, the reality is this:
The Life Skills program is seen as the space for students with disabilities. When they’re not present in the wider school community, no one notices. They’re not missed.

And if you're not missed… do you really belong?

Separate spaces that “other” are not just happening in our schools. Think of separate church programs for people with disabilities that operate in isolation from the main congregation. Or separate dance classes, separate classrooms, separate everything — created with the expectation that people with disabilities belong “over there”.

If a separate program exists, but the broader community doesn’t even know it exists, doesn’t see its value, doesn’t embrace its participants, doesn’t feel the void of that people group missing from the larger community — then that space “others.”

My daughter Macyn is entering 11th grade and is working on basic math. She wouldn’t thrive in an advanced algebra class — that’s not the right learning space for her. But if she were to walk into that class by mistake, belonging can still happen and It sounds like:

“Macy, I’m so happy you’re here. I know this isn’t the best space for you right now, and I’m someone who can help you find the right one. Let’s figure it out together.”

See the difference?

Belonging begins with how we respond. With welcome. With the assumption that you matter here. That we’re glad you came. That we’re in this together.

Separate spaces aren’t the enemy.
Separation without relationship — that’s the problem.
Segregation without value, without invitation back to the whole — that’s the problem.

But when we create space to honor a person or group — and we hold that space in connection to the larger community — we move toward something beautiful.

We move toward true belonging.

Let’s reflect together:
Where have you seen separate spaces used to honor a group — and where have you seen them used to other?
Have you ever been in a space where someone helped you belong — even if you didn’t “fit the mold”?

Hit reply or leave a comment — I’d love to hear your story.

Twenty-seven days ago, I lay on a bed beside my mom as she took her last breath.

Every day since she died, I wonder—how can this be?
How am I here, in this world, and she is not?
How does life just keep going?

I am shaken by how everything is different,
and, everything’s the same.

I wake up.
The coffee’s set to percolate.
I grab a mug, pour in a dash of cream, a sprinkle of cinnamon.
I make breakfast for my kids:
mango, banana, pineapple smoothies.
Egg sandwiches with cheese.

I embrace them as they come into the kitchen,
breathe in the scent of their hair as I kiss their heads.
I pack lunches.
Tie shoelaces—double knot.
Hug them again as they hop in the car with their dad,
off to school.

Everything is the same.

I pour myself another cup of coffee.
My mom liked coffee.
I think about my mom.
I never stop thinking about her.

I want to get in the car and visit her.
I want to kiss her head and smell her hair.
I want to tell her that Macy got a part in the school play,
that Truly wrote another song,
and laugh with her about something August said.

But she’s gone.

Everything is different.

I’ve only ever had a mom.
I’ve never not had a mom.

Everything is different.

I move through the house,
getting ready for my day.
I plug in the flatiron.
Wash my face.
Pick out an outfit.
Tidy the dishes.
Start a load of laundry.
Open my laptop.
Answer emails.
Click the keys to write something new.
Respond to texts.
Laugh at funny videos.
Kiss my husband on the cheek.
Think about what to make for dinner.

Everything’s the same.

I open my phone to call my sister.
Her name and number are saved in my favorites.
Just above hers: “Mom.”

I think about deleting the number.
I don’t think I ever will.

I smile through tears, remembering
how much my mom hates cell phones.
Wait—hated.

Everything is different.

Twenty-seven days ago I lay on a bed beside my mom as she took her last breath.

It’s time to pick the kids up from school.
I slip on my Birkenstocks.

I hop in the car.

I turn on the music.

I roll down the window.

Everything is different.
Everything’s the same.

Read more

I felt a surge of pure rage—no, righteous indignation—when I came across an article on SciTechDaily, dated February 23rd this year, titled: CRISPR Snips Away Extra Chromosomes, Offering New Hope for Down Syndrome Treatment.

Big sigh. Eye roll. Gritted teeth. Here we go again.

So. Many. Problems.

We could dive into the ethical issues—what happens when we "play God" and start creating "designer babies." We could discuss the risks of unintended consequences, irreversible harm, and the shadows of eugenics. There is so much wrong with this narrative.

But today, I want to focus on what it really means for a person to have Down syndrome.

Let me introduce you to my daughter, Macy. She’s sixteen years old, and she has Down syndrome. Maybe you know her because you’re family or friends, or perhaps through my books or social media accounts. Maybe you’ve crossed paths with us at Trader Joe’s or know her from school. If this is your first introduction, let me paint a picture of who she is:

Macy is unapologetically herself. She is a vibrant, strong-willed young woman whose authenticity, joy, and determination inspire everyone she meets. She thrives in environments where she’s included, celebrated, and supported in expressing herself freely. Macy is deeply connected to her friends and family. She loves music, dance, and has an incredible ability to persevere through challenges. Her dreams center on meaningful friendships, community involvement, and growth—whether that’s through dancing, learning new life skills, or pursuing new interests.

Macy’s resilience and her ability to see the best in people reflect her kind heart and optimistic spirit. She is cherished and supported by her family, who are deeply proud of her journey and committed to helping her thrive. The impact she has on those who know her is profound, teaching everyone to appreciate her unique perspective and the joy she brings to their lives.

In short, Macy is an incredible human being. And Down syndrome is part of what makes her who she is—what makes her amazing. Her extra 21st chromosome is in every cell of her body. There is no Macy without Down syndrome. The two are inseparable.

Now, let’s talk about this so-called "new hope" offered by the CRISPR discovery mentioned in that article. It’s presented as a potential "cure" for Down syndrome. The argument for pouring money and effort into this "cure" assumes that the world would be better off without Down syndrome. But that raises a chilling question: “Do we want a world without Down syndrome?”

That question, frankly, feels cold and disconnected. The real question is: “Do we want a world without Macy?” The pursuit of a cure for Down syndrome (which, by the way, is not being pursued by people with Down syndrome) is ultimately the pursuit of a life without Macy. A life without August. A life without Trista, Alden, Jacob, Kayla, Nico, Grace, Holly, and so many others.

The "new hope" described in that article is nothing but misguided. The idea of erasing Down syndrome to create an idealized version of what we think life should look like is a form of hate. I will not allow the value of my children’s lives to be questioned just because not enough people have done the hard work of dismantling their own ableism.

The truth is, the new hope is found in the lives of my children with Down syndrome. It’s in their authenticity, their joy, their unique perspectives. Their lives point to the intrinsic value and worth of all human beings. Their lives invite us into a new way of being, thinking, and loving that is authentic, generous, and deeply connected.

There is new hope found in the lives of people with Down syndrome, not in their elimination.

If “new hope” is what scientists and this misinformed world are in search of then I challenge them to place their efforts elsewhere. Place the dollars, research and energy into the hope of a world that works for people with Down syndrome. The new hope I’m fighting for is found in the classrooms where they are welcomed, embraced, and included. It’s found in dance studios eager to have Macy join. It’s found in birthday party invitations and weekend playdates. It’s found in meaningful, support employment. It’s found in diverse communities where people with Down syndrome can thrive. A new hope is when a parent of a newborn with Down syndrome hears, “Congratulations! You are going to love this child more than you can imagine. Your child will live a full, good life because the world will love them too.”

Hope is found in the very lives of people with Down syndrome.

That’s the hope I’m fighting for.

“I know,” she replied, her tone carrying the certainty of her 13-year-old omniscience.

“Truly, it’s worse than you can imagine.”

“Mom, I’ve seen her. I know.”

“Yes, but her disease has progressed significantly since then.” I began painting a picture, hoping to prepare her for what she was about to witness. “To keep her safe, Honey-gram is in a large blue chair with a tray called a gurney chair. It restrains her, and she hates it. Sometimes she bangs her hands loudly on the tray and screams. It can be alarming.”

“That’s okay,” she said simply.

“She’s also very angry and agitated most of the time. She might yell at you, cuss at you, even call you names.”

At this, my daughter giggled. She had never heard her Honey-gram cuss. “Mom, I’m in middle school. I hear cussing all day.”

“I know, but this is different. What you’re about to see is that your Honey-gram isn’t herself anymore—not even a little. I’m deeply upset by what I witness every day when I visit. You’ll likely feel upset too. It’s okay to feel that way. If you want to leave at any time, that’s totally okay. Okay?”

“Okay, Mom. I got it.”

“One more thing,” I said as we pulled into the parking lot. “This facility is for people with Alzheimer’s and dementia. The way they interact with the world is different, and it can be uncomfortable at first. But they are fully human, and they are wonderful.” I squeezed her hand.

“Mom! I got it!”

And you know what? She did.

When the locked door leading into the central hub of The Blooming Place* opened for us, my daughter and I stepped into a world within our world.

Lining the halls were seniors—some in recliners, some in wheelchairs, some wandering. The space was alive with constant commotion as residents had their needs met, visited with each other, or spoke to themselves. Each had a life before, a life they had since lost. Like my mom, they were no longer who they had been months or years ago, prior to living at The Blooming Place, yet somehow still themselves. They were all here because their minds had deceived them.

At first, it was heartbreaking. But over the weeks I’d spent at The Blooming Place, I had learned to see beyond that first impression. Beneath the sadness, there were pockets of goodness—tender moments tucked in corners, quiet kindness humming beneath the loss. Yes, grief filled the space, but so did love. Love between caregivers and residents, love among the residents themselves, and, sometimes, the unwavering love of a visitor who came to sit beside someone they had lost, yet who was still here.

Scanning the room for my mom, I smiled at the residents I had come to know. I gave hugs, introduced them to my daughter, who, to my delight, smiled genuinely at each stranger approaching her, shaking her hand or offering a hug.

“Where’s Honey-gram?” she asked.

Just as she spoke, a loud banging and yelling echoed down the hall.

“Found her.” I put my arm around my daughter, and we walked toward the commotion.

Since arriving at The Blooming Place, my mom had been a person trapped within herself, tormented. She knew who we were, knew when we were there, but her suffering was so constant that none of it seemed to matter. It was horrible and heartbreaking.

“Hi, Mom.” I took her hand. “I love you today.”

As expected, she screamed, cussed, and pulled her hand away.

“Hey, Mom, Truly’s here today.”

“Hi, Honey-gram.” Truly smiled.

My mom didn’t smile, but she reached out her hand. As Truly took it, I stood on high alert, aware of the bruises and scratches on my own arms and hands from past visits.

I spoke gently. “Mom, isn’t it great to see your Truly Star?”

She turned to me with narrowed eyes and threw my hand down. “You, go away!” But then, looking back at Truly, still holding her hand, she softened. “Truly, please stay.”

Truly leaned down for a hug. “I’m not going anywhere, Honey-gram.”

We stayed for an hour that day. There were the same hard moments we had come to expect. But there were sweet moments, too. I watched in awe as my daughter fed my mom banana pudding, wiping the corners of her mouth with a napkin. As she tucked my mom’s hair behind her ears to keep it out of her face.

My mom still yelled. She still cussed. She still squeezed Truly’s hand too hard, and I had to intervene. But Truly took it all with grace, letting her love guide her through the discomfort.

As my mom’s disease has progressed, my husband and I have had countless conversations about whether we should keep visiting—whether we should bring the kids, whether exposing them to this was right. We revisit this question daily.

And yet, this is what I keep coming back to:

To be human is to be vulnerable. The comfort and safeguards we build around ourselves can disappear in an instant or erode over time. But what never changes is Love.

Love is what brings me back to my mom, day after day. It’s what allows me to sit beside her and say, “I see you. I am with you. I am for you. I love you.” It’s what ensures that though she is gone in so many ways, she will not be cast aside or forgotten.

There is a great mystery in this—this total resolve, this acceptance of who she now is. The deep ache of missing her, even as she sits right in front of me. And yet, it is a privilege to be here, to bear witness. Being rooted in the disability space has given our family the capacity to hold this terrible, beautiful truth. More than 16 years ago, when I adopted my oldest daughter—who has Down syndrome and had significant health needs—I had to ask myself a fundamental question:

What gives a human life value?

I searched my soul for the answer. And here is where I landed:

The breath in our lungs. The beating of our hearts. The ability to give and receive love.

Our value is innate. We cannot earn it. It does not change as we change. It exists because we exist.

I visit my mom, and I take my kids, because she exists.

I want them to know we don’t turn away from the hard things. That life isn’t meant to be smoothed out for our comfort. The cracks and crevices—the sharp, uncomfortable edges—give us traction when we need it most.

At the same time, I want them to know we don’t have to expose ourselves to the violence and hate being tossed around by this horrible disease which has taken over my mom’s mind. I don’t want them to be traumatized.

We are walking a very fine line here. It’s hard to know what to do. So, we do what we know how to do:

We show up.

We show up knowing that sometimes, the brave thing is to stay. Sometimes, the brave thing is to leave.

But always, the brave thing is to love.

Dancing is one of Macy’s greatest joys.

Macy also loves being around people. She seeks out social gatherings, observing, smiling, and soaking it all in. For her, the perfect scenario is a dance floor—a room full of fun, a DJ at the front, and space to move her body to the beat.

She’s the one who will shut. it. down. At sixteen, her dad and I know we won’t leave until the DJ plays the last song. Trust me, it’s not an option.

But there's another side to Macy's story. Despite her love of people and dancing, friendship and community have been a challenge throughout her adolescent and teenage years. The reasons are many, layered, and complicated. And it breaks my heart.

Macy is in 10th grade at a high school of 2,500 students. She’s in the Life Skills program, designed for students with intellectual and multiple disabilities. While she takes theater arts and ceramics with general education students, most of her day is spent separated from the rest of the school, with limited opportunities to be part of the larger community.

However, this year, she has a bright spot—her best friend, Stella, is a freshman at her school. Stella is not in the Life Skills program. She takes advanced placement classes and was thrilled at the idea of spending time with Macy at school. I wanted it to all play out the way Stella and Macy hoped it would, but I knew their experiences at school were worlds apart. Stella’s dream of being with Macy at the same high school would be an uphill battle, neither of them equipped to fight alone.

Take lunch, for example. For most friends, it’s a simple “Let’s meet at the blue table by the gym.” But Macy, who spends her day in the Life Skills area, unfamiliar with most of the campus, needs support just to get to that blue table. Her lack of exposure to her campus along with her intellectual disability makes this simple plan anything but easy.

There’s one club on campus that aims to bridge the gap between disabled and non-disabled students, with a stated goal of fostering a sense of community. Macy and Stella both joined. But so far, Macy’s experience with the club has been limited to non-disabled members volunteering to eat lunch with the Life Skills students on Tuesdays and hosting an end of year "prom" in the middle of the school day, exclusively for the Life Skills students.

Now that I’ve set the stage, let me tell you about homecoming.

Stella and Macy were ecstatic about going to homecoming together. They bought sparkly dresses, made plans, and then—just days before the dance—a wildfire broke out in a neighboring community. School was canceled for the week, and so was the dance.

It was rescheduled for a weekend when Stella and her family were out of town.

The girls were crushed.

To make up for it, they got dressed up on the night of the originally scheduled dance—hair, makeup, sparkly dresses, the works. Our families took them out for a fancy dinner at a place with live music, and Macy and Stella shut it down. They danced until the band played its last note. It was magical. Stella’s mom and I left with hearts full of joy, knowing we had given them their own special homecoming.

I wish that was the end of the story. But unfortunately, it’s not.

A few weeks later, Macy, still on a high from her "homecoming," came home excited about the rescheduled dance. She wanted to go so badly.

We tried reminding her she’d already had her homecoming. While she was grateful for the night she had with Stella, she wanted to go to the school's dance, just like her peers.

But Macy is not like most of her peers. She’s a student with Down syndrome who spends most of her time apart from the rest of the school.

I know the lack of community Macy has at school. I also know that homecoming is a social event, and it’s rare—if ever—that someone goes to a dance alone. Especially a student who already finds themselves “othered” at school. I was determined that Macy wouldn’t go alone either. But with Stella out of town, I had to find someone for Macy to go with.

I started by asking if any of the Life Skills students were attending. I was told no.

I thought about the club, the one where students volunteer to have lunch with Macy. But the longer Macy is part of the club, the easier it is for me to believe that, unlike Stella, they see Macy as a volunteer opportunity, not a friend. None of them have reached out to her outside of Tuesday lunches or the “prom” at the end of the year.

So, I emailed the club advisors and president. I shared how much potential the club has to truly build community and belonging for students like Macy. I told them Macy would love to attend homecoming but had no one to go with, and that this could be a great opportunity for the club to foster inclusion. I emphasized that Macy deserves more than just a lunch buddy on Tuesdays.

I haven’t heard back.

Homecoming is four days away as I write this. Macy, her dad, and I had to sit down and explain the situation. She doesn’t understand. She’s deeply disappointed and confused. And I hesitate to lay it all out for her.

There’s a reality Macy faces as a teenage girl with Down syndrome, a reality I still try to shield her from. It’s a reality reflected in the actions—and inactions—of her school community. A reality that says people with Down syndrome are still seen as "less than," slotted for “that program, over there.” A reality where a club designed to foster inclusion gives its non-disabled members a pat on the back for eating lunch once a week with Macy, while failing to create genuine, lasting connections.

My daughter won’t be going to her homecoming dance this weekend. And while I want to say I’m confused, the truth is, I’m not. I’m disheartened. After 16 years of tirelessly working to build Macy the community she deserves, I can’t find one person to go to a dance with her.

Instead, she’ll be at home on Saturday night, not by choice. We’ll play her favorite music, and she’ll dance. By golly, she’ll dance. And I’ll keep praying for the day Macy becomes a known and cherished member of her school community. I’ll keep shining a light on the flaws in the system meant to support that.

And I’ll hold on to hope that next year, (please dear Jesus)  Macy will go to homecoming with the group of friends she dreams of being part of.

Let me start with some logistics: IEP stands for Individualized Educational Plan/Program. It is a legally binding document put together for a student with certain qualifying disabilities, by a team of that student’s educators and parents, as a plan of support for them at school. This is the simplest definition I can come up with.

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