The Definition of Emergency

 

I was surrounded by therapy equipment. My physical therapist, Amie, was about to help me onto the treatment table to stretch when the lights flickered. Ten minutes earlier, a mild rain had started, but nothing about it set off my internal alarm. I'm a Midwestern girl through and through. Storms rarely frighten me.

I looked at Amie and asked, "Do you think the elevator just shut down?"

She walked over to check.

Sure enough, it had.

After confirming the elevator wasn't working, Amie called building maintenance. The woman on the other end explained that it wasn't considered an emergency because I wasn't actually stuck in the elevator.

I remember thinking, What about this isn't an emergency? I'd love to know.

The only accessible way to get downstairs had disappeared.

By now, the storm had intensified to the point that it looked like 11:00 on a December night, even though it was only noon on a July afternoon. I wasn't in danger, but I was completely stuck.

Amie first called the nonemergency number. They told us to call 911 because first responders were already responding to so many storm-related calls. We did...and no one answered. We called again. Eventually, we got through.

The dispatcher told us someone would come, but it would likely take a while because my situation wasn't considered an emergency.

Let's pause for a second.

I actually agreed.

If someone was in a car accident or trapped in a flooded basement, they absolutely should come first. Those are life-threatening emergencies.

I wasn't frustrated with the dispatcher. She was responding to a town overwhelmed by a severe storm. The building manager, on the other hand, was simply following whatever policy defined an elevator emergency. I couldn't help wondering who wrote that policy—and whether they had ever considered someone who couldn't leave the building because the only accessible exit had disappeared.

About twenty minutes later, the paramedics arrived.

"We can easily get her downstairs," one of them said, "but we can't get the wheelchair down."

Before I could say anything, Amie responded.

"No. She has to be in her chair."

We've worked together for five years. She gets it.

My wheelchair is not who I am, but it is my link to independence. Besides, where exactly was I supposed to go once I reached the lobby? The goal wasn't simply getting me downstairs. It was getting me downstairs with my wheelchair.

About an hour after the lights first flickered, the fire chief arrived.

He didn't repair the elevator. He simply used his key to place it into emergency mode, allowing it to make one trip to the first floor.

Just like that, I was on my way home.

Crazy, I know!

Up until a few days ago, I genuinely thought this month's blog post was going to be about my trip to Minnesota. I had a wonderful time seeing family and friends, and I came home expecting to write about that.

Instead, I'm writing about an elevator.

At first glance, this story is about a broken elevator.

It's not. It's about what happens when the only accessible way out of a building suddenly disappears.

Throughout the afternoon, I kept hearing the same thing:

"We can get you downstairs."

What no one could tell me was how they were going to get my wheelchair downstairs.

And for someone like me, those are two very different questions.

No one failed me that day.

My therapist advocated for me. The dispatcher was managing a town overwhelmed by a severe storm. The paramedics wanted to help. The fire chief found a solution.

But the experience exposed something: this is what ableism sometimes looks like—not intentional exclusion, but systems that were never designed with disability in mind. The definition of "emergency" didn't account for losing the only accessible exit. That's a blind spot worth talking about.

We invite people with disabilities to use our buildings every day. We should also invite them to help plan what happens when those buildings stop working the way they're supposed to.

People with disabilities deserve a seat at the table when emergency plans are written—not after they're tested.

Because accessibility shouldn't disappear the moment the elevator does.

It's Fun, Isn't It?

I kept thinking that perseverance was going to be the word that defined 36.

As you know, life has been stressful lately. Managing caregivers has felt especially heavy, and I walked into my birthday week thinking, I hope I can get a little respite.

I need a break!

One of my favorite things about birthdays is that they have an interesting way of slowing everyone down. We spend so much of our lives rushing from one responsibility to the next that we often forget to simply enjoy the people God has given us. This week reminded me to stop.

I laughed over watermelon mocktails with Natalie. If you've followed my blog for a while, you know Natalie is Julie's twin sister. Julie is a constant presence in my life even though she passed in 2016. Naturally, she's still part of every conversation Natalie and I have.

Julie was the root, and so many branches of friendship have grown from what she left me: a beautiful community.

I left dinner smiling, not just because of the fun mocktails, but because spending time with Natalie always gives me energy. She's one of those people who leaves you feeling happier than you were before.

A couple of days later, my family and I wandered through TJ Maxx before heading to dinner. They let me pick out a few gifts. Dad shared his opinions, which I love. He gets more and more opinionated as the shopping trip goes on. Mom is always sharing her thoughts too. It's fun because it's silly. We don't talk about the latest fight with the insurance company or the stress of managing caregivers. All that matters is having fun.

We had a wonderful dinner at Maggiano's. I remember looking around the table and feeling incredibly grateful that these are the people God chose to give me.

The next day, my friends Tom and Vic completely caught me off guard. Somehow, they managed to bake a birthday cake at home and have it brought out at the restaurant. It was such a simple gesture, but sometimes the simplest gestures say the most. Someone spent time thinking about me. Someone planned ahead. Someone wanted me to feel celebrated. I'll never outgrow being touched by that.

As I looked back over the week, I realized something.

The circumstances that made me think "I still need perseverance." The problems still exist. Caregiver schedules still need to be figured out. Challenges are still waiting for me. Thirty-six won't magically be easy.

But God, in His kindness, reminded me that He has never asked me to persevere alone. Instead, He has spent my life surrounding me with people who make perseverance possible through watermelon mocktails, family shopping trips, homemade birthday cakes, and countless ordinary moments that remind me I'm never walking alone.

People who laugh with me.

People who pray for me.

People who celebrate with me.

People who quietly carry pieces of the load without even realizing they're doing it.

So, to my family, my friends, and every person who has walked beside me over the years...

Thank you.

You give me the strength to live what should be impossible.

And when I stop long enough to notice...

It's fun, isn't it?

The People Who Show Up

Hey! This is going to be a quick update about my month.

We got to celebrate my mom by going to brunch at Pinstripes for Mother's Day. She deserved that and so much more. She is my coworker, coach, confidant, and so much more. I love her more than words can describe. A couple of weeks later, she took me shopping at HomeGoods and spoiled me with some pink bedding for my birthday next month. It wasn't just the bedding that meant so much—it was the reminder that she knows exactly what little things make me happy.

Life has been hard. We're still really struggling with caregivers. The search for the right people continues, and some days it feels never-ending. It's been so ongoing that I cannot quite wrap my head around it. At the same time, I have been reminded how fortunate I am to have the caregivers I do. Several of them stepped up in a big way over Memorial Day weekend, and I honestly don't know what I would have done without them. This month was long and disappointing in many ways, but the people in my life kept showing up.

I did get a really cool opportunity to be involved in some medical classes over the summer. I will be acting as a patient with a disability while medical students work through simulated patient encounters. At the end of each simulation, I will have the opportunity to give feedback to the students. This work is a passion of mine, so it feels like a meaningful step forward in my career. More than anything, I hope these future doctors leave with a greater understanding of disability and the importance of being patient with people who use communication devices. A little patience can make all the difference.

This is the start of my birthday month, and after the kind of month I've had, I am excited to have something to look forward to. More than anything, I am looking forward to seeing the people I love.

As I reflect on this month, I keep coming back to one thing: gratitude. Gratitude for my family. Gratitude for my caregivers. Gratitude for new opportunities. And gratitude for all of you.

The fact that you take the time to read these posts every month brings me to tears—in a good way. I never take it for granted. Thank you for continuing to show up and be part of this journey.

Until next time,

Hannah!

Speak Anyway

It’s been a horrendous month regarding caregivers, but I want to thank those who really stepped up when everything was going south. It did so in unimaginable ways this month. I’m incredibly grateful for the good people in my life. You know who you are—thank you from the bottom of my heart.

In other news, I had two speaking engagements this month: one at Elmhurst University and the other at an elementary school.

I spoke for a disability awareness class back in January, and one of the students later emailed me to ask if I would speak at her sorority’s event. The focus was on being a minority and a woman. I was part of a panel and had the privilege of sitting alongside other fascinating women. Some were women of color, and others were part of the LGBTQIA+ community. It was incredibly compelling to hear their stories and perspectives.

The other speaking engagement, with the kids, was so much fun. I was connected through my pediatric speech therapist, and it felt like a full-circle moment. My mom and my therapist fought for me to have a communication device—and thank God they did. At such a young age, most people didn’t think I would be able to do all that I’m doing now. While I don’t blame them, I’m grateful I had the tools I needed to become who I am today.

I’m hoping April showers bring May flowers—in the form of a calmer month. But even if they don’t, I’ll keep speaking anyway.

Enjoy the sunshine,
Hannah!

Wake Up and Celebrate!

My alarm went off at 6:00 in the morning, which is most unusual for a Saturday. I don’t believe I would get up that early for many reasons, but this was a special day. It was my cousin’s 40th surprise birthday party. Emily was five years old when I was born, and she has been a staple in my life—a steadfast presence. Once the alarm went off, it was go time. My caregiver came at 6:30—bless her heart, because it’s usually 10:00. I do realize this is a serious perk of being single. Today was going to be a great day!

I had my caregiver dress me in a floral sweater and light blue jeans. I also really like the way she does my makeup, so I was grateful she came that morning. I quickly grabbed an iced cold brew from the fridge and a blueberry muffin. Yes, I do stock these things in the fridge to make the morning go smoothly. I’ve been living independently for almost 18 years. I’ve learned a few life hacks over the years. My mom came to pick me up, and we had a two-hour drive ahead of us.

It was a nice two-hour drive with my mom. We talked about what was going on in our lives and the people we love most. I like having this time one-on-one with my parents; it’s a really nice way to have all the time in the world to talk without worrying about how long it takes to type a message. We pulled up to a large but quaint coffee shop. It used to be a church, and the shop owner kept the stained glass windows. For a woman who loves Jesus and coffee, I was quite happy.

Emily has two little kids who own a huge chunk of my heart. They got there before Emily did. I hugged my seven-year-old and actually managed to have the coordination to pick her up. This was the first time in my life I was able to do that. I hugged her older brother, who is ten years old—going on twenty-five—so I gave him a bear hug. I couldn’t love them more.

“How long have you guys known?” Dad asked.
“A few weeks,” the kids replied.
“It’s a little scary how well they can keep a secret,” Jacob, Emily’s husband, replied.
I shook my head in agreement.

After about a half hour, Emily was coming! We got a two-minute warning, and then the countdown began: 10, 9, 8, 7, 6, 5, 4, 3, 2, 1! “HAPPY BIRTHDAY, EMILY!!!” everyone shouted. My cousin was so surprised. The expression on her face was the epitome of shock and pure joy. It was a moment of seeing my cousin truly happy.

For two hours, we talked and laughed together.

“Hey Hannah!” Emily exclaimed. “I’m so excited to see you. Thank you for coming,” she continued.
“Wouldn’t miss this for the world!” I replied.

I wouldn’t have missed it for the world. I loved celebrating you all. You all bring me so much joy. It’s always an honor to be able to celebrate you.

One last very exciting thing! I met one of my favorite authors, Wade Rouse. He is a USA Today best-selling author and is absolutely brilliant. Wade and his husband, Gary, are going to put me in touch with

his agent, which is amazing. I took an online class with them in February, and they were very impressed with my writing skills. I can’t wait to connect and see where this leads.

It’s been a really lovely month. Spring is starting to shed winter’s harsh coat and replace it with colorful flowers and light. Let’s enjoy this season. May it offer you a renewed sense of hope.

With all that spring has to offer,
Hannah!

 

Singles Awareness Day

Valentine’s Day. Let’s talk about it. Some call it Singles Awareness Day. It makes me feel a little lonely every year, even though I couldn’t love my community more. You all make up the pieces of my heart, and I live a joy-filled life. I truly am happy, but happiness and loneliness can coexist. I genuinely have a lot to give to another person, and I don’t think the average man sees that in me. People who see me but don’t really know me probably assume many things about my life that aren’t true. All of you know that I bring a lot to a friendship. I love doing simple acts of kindness. The fact that small things can change our perspective is amazing. I love sending greeting cards for this reason—they’re a little way to show love to the people I care about.

I wholeheartedly believe my life is vibrant and full of connection. I don’t understand why romantic love hasn’t found its way into my life yet, and honestly, I’m a bit frustrated. If you know anyone who might be a good match, I’d love to hear from you. And full disclosure—if I go on a bad date, it will probably end up as a humorous blog post.

This month has been…well, a little blah. One morning, my communication device wouldn’t turn on, and I had to send it in for repairs. No cute story here—just my caregiver grabbing my backup device and packing up my current one to send to Ohio. Has the month been awful? Absolutely not. Has it been fantastic? Not exactly. But my dad got me roses on Valentine’s Day, and it meant a lot. Some of you made the day special too, so thank you.

Now, let’s move on to the month of luck—I already have my St. Patrick’s Day decorations up!

Remodeling and Reflecting

2026 had an interesting start. I was immensely sick with the flu—so sick that I was in bed for two full days. If you have the flu right now, I’m genuinely sorry.

All of this was happening while my dad remodeled my office. What used to be a desk, a bulletin board, and a collection of framed degrees and awards is now filled with drawers and floating shelves that hold the things I’m most proud of. It’s absolutely gorgeous and I am so grateful to my parents for making it come to life.

Mom and I also took on the task of hiring two new caregivers. It remains the most significant and repetitive challenge in my life. It takes up an enormous amount of mental space and is truly exhausting. If anyone wants to get together and brainstorm solutions, I’m available.

Mostly, I want to thank my parents for being my biggest supporters. We are a team, and I am deeply grateful for them.

And a word about the world. We are living in a time of unimaginable darkness—something my mind and heart still struggle to fully grasp. It’s disturbing on every level. To the many protesters last weekend: thank you, from the bottom of my heart. Our country’s ideals, rights, and liberties feel as though they are on their deathbed, and it is democracy—with a lowercase d—that will save the country we so dearly love.

“Today, we remember that freedom is not free. We have to work at it, nurture it, protect it, and even sacrifice for it.” —Alex Pretti

Stay strong,
Hannah!

 

Merry Christmas!

 I’ve decided that this month is simply about gratitude. To say I’m humbled is an understatement. Having such a strong village around me has led to unbelievable kindness and goodness.

While rolling through the grocery store, I ran into a mom from church.

“Hey, Hannah! I’m from church, and these are my two little girls.”

“Hi! I recognize you. Girls, do you think Santa is coming?”

“Yes!” they responded excitedly in unison.

“I have a good feeling you’re right,” I replied.

We said our goodbyes and parted ways. My caregiver and I hopped in the car and drove home.

“There’s trouble!” my mail carrier said by way of greeting.

“Hey, how are you?” I asked.

“Not bad, not bad. Here’s your mail.”

“Your timing is impeccable.”

“It’s my job.”

“You go above and beyond.”

“Merry Christmas, Hannah!”

In response, I pressed the preprogrammed button on my communication device that said, “Merry Christmas.”

As I pushed the elevator button to go up to my condo, I thanked God for my life and continued on with my merry day.

Thank you all for making my life as joyful as it is. God is my North Star, and you make up all the stars in my sky.

Love,

Hannah!  

Friendship and Gratitude

I started the month by celebrating the life of my best friend, Julie. Her twin sister, Natalie, threw the pinkest, most beautiful celebration for her. For those who don’t know, Julie passed away ten years ago from Cystic Fibrosis. Losing her was true heartbreak, and this decade without her has been bittersweet.

One of the unexpected blessings has been the friendships I’ve formed with her friends. For example, Julie’s neighbor’s wife, Nora, and I have become incredibly close. I introduced her to Natalie years ago, knowing they would get along—and they did. Watching the two of them navigate motherhood has been such a privilege. I'll definitely be the fun aunt when grow up. They are extraordinary mothers, and I feel so blessed to be their friend.

I just returned home from Thanksgiving. My Nana, who is 90, was lively and joyful, and I got to spend time with my two siblings, which is always fun. It was a wonderful, relaxing holiday—a much-needed break from the pace of everyday life.

I hope your Thanksgiving was just as warm and restful. Now it’s time to deck the halls! I want to say how profoundly grateful I am for all of you. The fact that you choose to read this year after year is a gift I could never repay.

So thankful,
Hannah!

Rolling Into a Fourth-Grade Classroom

“Hey, you were here last year. Welcome back!” the receptionist said as I handed her my ID. The glass between us was solid, protective—meant to stop a shooter if it ever came to that. I can’t enter a school without identification, which is exactly as it should be. Still, the thought always gives me pause as the buzzer sounds and the door opens.

“How are you?” they all asked once the security measures were behind us.

“I’ve been good.”

Nora peeked her head in.

“I’m so excited!” she said.

“Me too!” I replied.

I was going to speak about the movie Out of My Mind to fourth graders today. Nora is one of my good friends, and this is one of my favorite speeches of the year. We walked to her classroom, which was colorfully decorated and focused on positivity. We quickly caught up.

The fourth-grade class filed in and sat in their assigned seats. Nora introduced me, and I took over.

“Hi boys and girls! I’m so glad to be here! My name is Hannah, and I came just to talk to you today. I’m going to talk to you about my life and my disability—and, of course, about Out of My Mind.

I was born with something called cerebral palsy. I can’t walk or talk because of it. I can walk if someone helps me, but otherwise, I use my wheelchair. Because I have a disability, people come and help me. They help with taking me to the restroom, feeding me, washing my face at bedtime, putting me in bed, dressing me in the morning, and putting on my pajamas at night.

I may not be able to walk or talk, but I’m so happy to say that I graduated from college, have a job, and live a really happy life—even though I’m in a wheelchair. I sound a lot like Melody, right? Melody needs help like me. However, we have different lives, and I’ll talk about that throughout our time together.”

I have given this speech for ten years, and it never gets old. To refresh your memory, Out of My Mind is about a fourth-grade girl who has cerebral palsy and uses a communication device to speak. Sound familiar? It’s very familiar to me.

The kids ask questions at the end of my speech. These were some of them this year:

• Did the kids hurt your feelings in school? I always say it hurt to be ignored by my peers.
• Can you program your own communication device? Yes!
• Do you have friends now? Yes! I have friends who love me for who I am, which is priceless!

Their questions always make me smile—and think. Each year, I’m reminded how much I’ve changed since high school. Thank goodness life gets bigger and better after high school!

Have a Wonderful Month, 

Hannah!  

Swinging

On a crisp fall day at my cabin, I sat in an adaptive swing. The swing had a high back and looked a bit like a child’s car seat. Aviva, my goddaughter, wore the unicorn dress I had just given her, the fluffy rainbow skirt spilling softly over my black leggings. Her small hands gripped my arms, her wide eyes sparkling with curiosity.

“Ready to spin?” my dad asked Aviva, a playful grin tugging at his lips.
“What does that mean?” she asked innocently, tilting her head.
“You’re going to find out!” he exclaimed, laughter in his voice.

My dad twisted the four chains that held the swing to the swing set’s top bar. He twisted them two good times and let us go. The swing surrendered to gravity, dipping and twirling us through the crisp autumn air. Leaves scattered in little whirlwinds around us as we spun.

“What did you think, Aviva?” my dad asked.
“Whoa, that was crazy!” she shouted, giggling.
“Do you want me to push you and then jump into my arms?” her great-uncle Dan asked.
“Yes!”
“Stand on Hannah’s legs and I’ll catch you,” he added, his voice gentle.

Aviva seemed hesitant, her little feet shuffling. I helped her up, as if to say, “It’s OK. I want you to do this.” Her grip tightened around my arms, and we began swinging higher, soaring through the crisp air as my dad pushed us with steady, strong strokes.

Feeling the wind rush past our faces, my dad called, “OK, jump!”

Aviva leaped like a little frog from one lily pad to the next, her laughter ringing through the yard. My dad caught her effortlessly, her arms wrapping around him in delight.

“That was fun, but I’m finished.” Aviva ran off, her rainbow skirt bouncing behind her as she dashed back to the cabin to show her mom the tiny gap in her smile — she’d just lost a tooth. The tooth fairy will be coming tonight. “That was fun,” I said, nodding with enthusiasm, appreciating just how playful and magical my dad could be.

Even though the world can feel heavy and dark, moments like these — swinging through the crisp autumn air, Aviva’s laughter ringing around me — let the light in. They remind me that joy can arrive in sudden bursts, soft and bright, warming the heart even when darkness seems to be all around us.

 

Keep Swinging (and hang in there),

Hannah!