Joyful Tears on the Balcony

I am ecstatic about Pope Leo. I was driving to physical therapy, checking Instagram nonstop to see if there was white smoke. As my caregiver drove, I hit refresh a million times. About five minutes into the drive, I shrieked.

“White smoke, Liliana,” I said to my caregiver.
“Really? Are you kidding?” Liliana exclaimed.
I nodded.

I was barely Catholic when Pope Francis was elected. This truly felt like my first conclave. I was really hoping the new pope would be someone like Francis, because we desperately need compassion in this world. Pope Leo embodies that.

My favorite moment was when Pope Leo cried on the balcony of St. Peter’s Basilica. I know he will be a leader unafraid to show emotion, and I think that’s a wonderful quality. I even journaled some thoughts. Here they are:

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As a little boy, he played Mass instead of baseball. What we often deem “not normal” could actually be holy. What if being different is actually holy? People who are different are often labeled “weird.” It reminds me of Jesus. He wasn’t normal—he was born in a barn and died the most brutal death imaginable.

Peter was the first pope. Jesus asked him three times, “Do you love me?”—as if to say, Do you love me enough to build my Church? Peter had denied Jesus three times. There’s a parallel here. Yes, Peter denied him, but if love covers a multitude of sins, then Peter is redeemed. Pope Leo has sinned; he’s human, after all. He just has to do what Peter did—love Jesus. Love him so deeply that he serves the Church and the world as Jesus would. I wouldn't want that responsibility.

Pope Leo’s two biological brothers have expressed both grief and joy. Cardinal Robert has died; Pope Leo is born. They watched him step onto that balcony and knew everything had changed. Christmas dinner? They don’t know. Easter brunch? They don’t know. If my brother David were elected pope, I don't know how I would feel.

Father Tony—the priest who confirmed me and who is dear to my heart—always says that we’re constantly dying to our old selves. There’s always a resurrection happening in our lives. The conclave is simply a larger version of that. It reminds us of the little resurrections we experience each day.

I hope Pope Leo brings hope to the world—especially to the United States. We may be the most powerful country, but morale has been low. Every day brings crazy, unwelcome news. Thankfully, we’re protesting and speaking out. That little boy who played Mass in his Chicago home is now the Pope. It’s the epitome of the extraordinary.

This election has given me hope. The world feels heavy, and I wish I could wave a magic wand to let justice and compassion rain down. The world is starving—sometimes literally—for justice. I hope Pope Leo’s soft power makes a difference. I believe it will. Whether you’re Catholic or not, I hope this moment puts a little pep in your step.

Plus, he’s from Chicago. How cool is that?

The Big Apple

I felt the sunshine on my arms while we waited for a New York taxi outside JFK airport. It was the end of April and the weather was wonderful. I needed an accessible vehicle, which actually wasn’t a big deal. The city we had just landed in happened to be very accessible, which makes my life exponentially easier. Mom, Dad, and David were with me and we were going to be there for two days.

            JFK airport seemed as massive as Ohare which we had flown out of. There were fountains with water in different colors as water sprayed up and down. David had talked to the guy at the taxi service. My brother set us up for success already telling the guy we needed the taxi to be ready for a wheelchair.

            After checking into our hotel in Manhattan, we had dinner and went straight to bed knowing that we had a packed schedule the next day.

The first thing on our agenda when we woke was to visit to The Morgan Library and Museum. They had an exhibit on Belle da Costa Greene. Thanks to ChatGPT, I was able to get a succinct summary of her life. Here’s a little overview:

Belle da Costa Greene (1879–1950) was a prominent American librarian who managed and expanded J.P. Morgan’s private collection into a world-class public library. Born to African American parents, she passed as white to succeed in a racially segregated society. Known for her expertise in rare books and illuminated manuscripts, she became the first director of the Morgan Library and transformed it into a major cultural institution. Despite her public success, she kept her racial identity secret and destroyed her personal papers before her death.

Belle's Desk

I read The Personal Librarian in January and ended up asking my parents if we could go to NYC to see the exhibit. I loved it and would recommend any book about her, especially The Personal Librarian. It’s historical fiction, and the authors do an excellent job of telling her story.

The museum was gorgeous with artifacts of Belle's life on display from photographs of her
parents and the desk she used while working at the museum. All of the objects were incredible to see in person.

After that outstanding exhibit, we headed to The Late Show with Stephen Colbert. He’s my favorite late-night talk show host. His dry wit makes me laugh out loud.

When we arrived, my dad asked the staff if all four of us could go in instead of just David and me. I had only managed to get two tickets. Those of you who know my father know he could persuade a turtle to walk quickly. Wearing a polo shirt and gladiator sunglasses, the ticket guy quickly agreed. The website made it seem impossible, but realistically, it was no problem. This is why we still need people—not just computers—running things.

The Colbert show was great but had some issues. He interviewed a CNN anchor who was fine, but the celebrity guest was supposed to be Will Ferrell. We were super excited! Colbert came on stage, graciously took some questions, and then quickly told us that Will Ferrell had canceled. In my opinion, that’s incredibly rude. If 200 people are expecting you, you show up! I don’t care if everyone knows your name—keep your commitments. Colbert still did his monologue, took questions for 20 minutes because of the no show by Ferrell, and then he went into his interview.

When the show aired that night, Will Ferrell was on and Colbert was in a different suit while he and Ferrell joked around. Something happened. Just saying. Also, Colbert could have been more gracious and explained the cancellation thoroughly. If you’re the face of the show, you’re responsible for everything that happens. You have to man up and explain why your show isn’t as advertised. He just ran off stage after announcing the cancellation. I call that cowardly. The show was entertaining even without Ferrell, and I would recommend going. Just don’t expect transparency if things go wrong.

New York was absolutely wonderful. I’m so grateful my family turned it into a vacation—we had a blast. The Big Apple truly is the perfect place for a quick, unforgettable escape.

Caregiver Turned Friend

“Hi, Hannah,” Kate yelled as she closed the front door.

This was our last day together. I had known this day was coming since I interviewed her. Kate had graduated from nursing school back in May and was looking for nursing jobs in the months ahead. Typically, this is a situation I try to avoid because it means finding another caregiver a few months later, but she was able to work on weekends, and I knew she was fun and reliable. It turned out she was ridiculously reliable—she covered for five days straight when another caregiver tested positive for COVID. I didn’t regret hiring her… not once!

Peering into my office, she said, “I’ll be on the couch until you’re ready.”

That’s a seasoned caregiver. She knows I’m finishing up and chills out until I need her.

After pressing Save in Microsoft Word, I pressed the lever to turn on my wheelchair with my right palm. Grabbing my joystick, I rolled into the living room.

“Hey! How are you?” I asked.

“Sad. I’m going to miss you.” Kate said as she stood up from the couch.

You have no idea, Kate.

“I’ll miss you so much. But for now, I need to go to the bathroom.” Sometimes Mother Nature has a way of pushing along sentimental moments.

Kate and I did our thing in the restroom.

“Let’s get going. I don’t want to be late.”

“Yep,” she said.

I was going to a church retreat for middle school students. Kevin, my longtime friend and mentor, had asked me to help out. I was happy to help. Readers, you may remember this as the presentation where my communication device bonked out last year, and my speech therapist had to run and give me her device.

Kevin texted, “Is the communication device working?”

I replied, “All systems go.”

“OK, Star Trek,” Kevin texted back.

Kevin is always making jokes. I love that about him.

We arrived at the church 40 minutes later. I walked into the very large gym.

“How’s it going?” I asked.

“Good. How are you?”

“Good.” Turning to Kate, he said, “And you are…?”

“Kate.”

Kate and Kevin exchanged pleasantries. After that, Kevin and I introduced ourselves as the speakers. My presentation was on joy vs. happiness. Here’s a little excerpt:

“Joy and happiness are two different things. First, joy is a choice. We can choose God, and He gives us joy. Remaining in a state of joy includes staying in conversation with God and looking for the people who help in difficult situations. It’s understanding that bad things in life happen, and we can decide what our hearts and minds are going to focus on. On the opposite end of the spectrum, happiness is fleeting. It’s an emotion. Emotions come and go; they are not stable. God’s presence, however, is very stable. It’s always available. Reasons to be happy are fleeting.”

You get the gist of what I said. The kids were great and asked a lot of questions.

Then Kevin took over. He did team building activities after my speech.

Kate and I left the church, and since we were celebrating her last day, she got to pick the place for dinner. She chose an Italian restaurant nearby. We had a lovely meal together.

One of her favorite things to do with me was making greeting cards for the kids in my family. I loved her enthusiasm for making each card unique. Kate had met two out of the five kids in my extended family. She picked up the unicorn card.

“Aviva?” she asked. Aviva is my god daughter. Kate quickly learned that she loved unicorns at her birthday party.

I nodded.

It’s little things like that I miss about seasoned caregivers. They know the tiny details that make up my life, and it’s hard when they leave. It’s nice not to have to explain every detail to yet another caregiver.

Once those cards were finished, we made a video of how she does my ponytail. She’s 5’0”, so she uses a stepstool. Check out the video here: http://bit.ly/3DYH9CC

We were in the middle of my bedtime routine when Kate offered to bring her boyfriend by the next day to treat me to Starbucks.

Heck yes!

Since our last day, we’ve absolutely seen each other and continue to. Are all caregivers like this? Absolutely not. However, some caregivers do turn into really good friends.

I’m blessed.

Signing off, 

Hannah!

Everyone is Sick

 Her eyes tell me everything, and she knows it.

“I think you’re sick. I don’t think this is just pain from your dystonia.”

It’s 2:30 AM, and I’ve had to call my wonderful roommate, Claudia, to bring me some Advil. That’s the agreement with my roommate. In exchange for discounted rent, she agrees to be home by midnight and help in these scenarios.

I type, “I’ll go in tomorrow,” on my no-tech, laminated alphabet board, which is literally cardboard and paper laminated together.

“That’s probably a good idea,” Claudia agrees.

My chest feels like a hammer is hitting it—a dull, constant ache. I’m heading for urgent care first thing in the morning.

Kate, my caregiver for the day, gets me dressed, and we’re off. I’m fortunate enough to live five minutes away from a clinic, which I don’t take for granted. It’s 10 degrees, so I am bundled up and despising the arctic temperatures. Kate hits the button for the ramp to open, and I scurry out anxiously to get inside.

“Open wide,” the nurse instructs.

Kate, my caregiver, is with me in the exam room. “Do you want me to leave?”

“No. I need you,” I reply. My need for independence shrinks when I’m sick. I feel terrible, and I don’t care if the doctor knows how accomplished I am.

Standing behind my wheelchair, Kate gently holds my head so the nurse can do the strep test. I gag slightly but stay composed.

“Do you want a COVID test?”

“Want” isn’t exactly the word I’d use.

“Yes, let’s get it over with,” I say.

I’m a little less stoic during that test. A stick up my nostrils, combined with the dystonia, is horrible.

Fifteen minutes later, the results come back: NEGATIVE. A wave of relief washes over me. I won’t have to quarantine! Hallelujah!

The doctor checks my throat.

“It looks red and very swollen.”

I nod, as if to say, Sounds about right.

“I’m going to put you on antibiotics and a steroid. The steroid will help with the pain—it’s worse than I’d like to see.”

I agree with her. “Thank you for everything.”

All the doctors and nurses here at the urgent care clinic are professional and kind. I’ve never felt patronized here, which shouldn't even be a concern, but in the past, doctors have assumed I have the cognitive ability of a child.

Kate drives me to the pharmacy. We get much-needed medication. I will struggle to wipe my nose independently, but I can—and I have to. I would say wiping my nose is the hardest part of being sick, but I find a way.

I watched a lot of Gilmore Girls during my recovery. When a caregiver was there, I was able to lie down. Otherwise, I was in my wheelchair.

Readers, I am finally feeling better! Everyone has gotten sick this year, and I’ve felt bad for you. I was getting cocky, thinking I wouldn’t. Joke’s on me.

I hope you’re healthy and happy. I am ready for spring. How about you?

Dad's 65th

Rolling onto the pickleball court, I saw everyone who meant something to my dad. It was his 65th birthday party. Everyone from his high school days to people who shared his love of the game were there. The large, open space was filled with nets in the air and white squares on the floor. Players were laughing and eating on the sidelines.

“Hi, Hannah! How are you?” Jane, a friend of my parents, exclaimed. Her ponytail bounced as she walked toward me.

“Great, how are you?”

“I’m good…”

“No, I have a better question. What’s the most exciting thing that’s happened in 2025 so far?”

That’s such a better question! I told Jane about how Sharon Draper had followed me on Instagram. She wrote Out of My Mind, a book about a fourth grader who has Cerebral Palsy. I think it’s amazing that she followed me. Subsequently, I searched for Draper’s agent, whom I successfully found after a 30-minute investigation. I met her, and she was a fountain of wisdom.

“That’s impressive,” Jane responded.

“Hey, Jane, get out on the court!” Mom yelled happily.

“I’m being summoned.”

I rolled over and watched. Mom had been friends with these women for 40 years or more. Through cancer diagnoses, parents passing away, the ups and downs of motherhood, and nights like tonight, their friendship endured. I’m in awe. The men of the group could say the same thing. They are truly a remarkable group of people.

After the game, Mom got everyone to sing to Dad. It was fun to hear all the voices that made up my parents’ lives. Rolling through the myriad of people, I heard a full-grown man call my name.

Who is that?

“Jake?”

“Yeah, and this is my girlfriend.”

The last time I saw you was high school graduation, and now you’re an adult.

“Hi.”

The core memory of David, my little brother and his friends I have is all of them in Little League and me being bored to death and insisting on having my iPod in. Mom always understood and helped me with my headphones. I was fourteen and appreciated listening to NSYNC during these long games.

“Nice to see you, Hannah,” David said as he came over and gave me a sweaty hug. He continued, “Catching up with Jake?”

“Yeah,” I replied, before he and his friends jogged off to play.

By that time, I had talked to everyone and was ready to go.

“Hey, Mom. I’m going to go.”

Leaning in for a hug, she said, “It’s been fun. Thanks for coming.”

“Wouldn’t have missed it for the world.

I hope you enjoyed reading about Dad's birthday celebration. It was a beautiful reminder of how the people in our lives shape us—and how some bonds only grow stronger with time. Thank you for being part of our lives!