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!

 

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!

Breaking Bread

 Just before heading back to Chicago, I had one last visit to squeeze in—breakfast with my dear friend Kelly. We met at the hotel restaurant, where the clinking of silverware and weekend chatter filled the air. Kelly showed up with a smile and a story.
“Hi. I broke my hand. I’ve had the longest week of my life, but I’m here,” she said.

With my luggage packed and ready to head home, I was grateful for one last visit.

If you don’t already know, I take a trip to Minnesota every year to visit friends I made at camp, some of whom I met in different seasons of life. Kelly and I met in my hometown at a certain therapy center. She was a speech pathologist, and I helped with her clients. When Kelly moved to Minnesota, it was a no-brainer that I would come and visit her.

Her blonde, classy, mature, nurturing daughter Sophia is her mini me.

“RJ, do you want help with your toys?” Sophia asked her little brother. He got settled with his toys. That girl impresses me.
“Sophie, is dance going well?”
“Yes! I got a solo!”
“I’m not surprised,” I said in earnest.
Kelly chimed in, “She’s really doing great!”

Breakfast was joyfully chaotic with Sophia’s little brother entertaining us. You have to embrace the good chaos.

My heart always breaks a little when I leave Minnesota. So many people there hold a piece of my heart. But when I return to the Land of Lincoln, I’m reminded why I have roots here.

Just a week after I got back, I had dinner with two of the sweetest human beings I know: my former chemistry tutor Cheryl and her husband, Ron.

Cheryl was by my side 18 years ago, patiently working through chemistry homework with me, explaining formulas and balancing equations. It wasn’t just tutoring—it was mentoring, and it was a friendship in the making.

Even now, Cheryl makes time to come out to Elmhurst every so often just to catch up. Dinner with them did not disappoint.

“Hannah, we have big news!” Ron said with a huge smile.
“Tell me. Tell me everything!” I leaned in, knowing it had to be good.
“Our daughter is engaged!” they both beamed.

I saw the pictures and remarked, “That’s absolute bliss!” And it was. The happiness in their faces was contagious, and I couldn’t help but feel so genuinely happy for their family.

Getting together with family and friends is a joy to me. This month was full of visits with beloved people—including my family. For the 4th of July, all 19 of us gathered at our cabin. The kids are so big, and I’m starting to see their personalities shine through. It’s truly a blessing.

Everyone in my life is incredible. Breaking bread together is as old as time, and every shared meal reminds me why: connection, joy, and peace.

With a Full Heart,

Hannah!

Dystonia and Storytelling

You know the gang from Friends or How I Met Your Mother? My parents have that type of friend group. They are the most fantastic humans. Some of them literally were in the hospital room with my mother. They were watching All My Children with Mom experiencing contractions. I was coming! That day, I became part of a friend group that I would admire all my life. From begging to go on girl’s nights and Mom saying, “No, you have fun with Dad, OK?” Even at six years old, I knew those girl’s nights had to be more fun than having a bowl of Special K with Dad for dinner. Sometimes, he would take me swimming and I knew that at least rivaled the fun they were having-at least in my six-year-old mind. My point being my parent’s friends are a second family. When I got the chance to tell a story from my memoir in front of them, it was a blast!

We were at Fitzgerald’s, a bar outside of Chicago. Maureen, a redheaded woman is the founder of Voicebox. This is a storytelling event for artists. My Uncle Gary has performed at this event for years.
He encouraged me to participate and after a little encouragement, I agreed. 

This is an excerpt from my story. These are some of my inner thoughts as I roll around Loyola back in 2018:

“It’s late September so thankfully I don’t need a coat. Coats will always be hard because I cannot take them on or off by myself. In the winter, I typically get from one building to another without a coat just by going super-fast. Typically, I’m questioned about my coat at least 300 times per winter. Able-bodied people will say, “It’s cold,” or my favorite, “You should have a coat on.” Easy for you to say when you have the ability to shrug a coat on and off. I do not have that ability. You are stopping me to point out the fact that it’s cold is just creating more time outside for me. I get that you have good intentions, but you are a barrier to warmth by stopping me.”

The truth is simply funny. This story will be published in March. I’m beyond thrilled! I'll keep you updated.

My mom’s girlfriends, Jet, and Margie came out for a Dystonia fundraiser. They are so supportive. We walked around Brookfield Zoo wearing our tee shirts for Dystonia.

As most of you saw on social media, I had the privilege of speaking at the cathedral in Joliet. They brought the 5^th graders from several schools. It was the first day of a three-part series. I cannot wait for the second day which is in January. The kids at my church recognized me and said hello this weekend. It was so cute!

I’m busy and loving life!

 Happy Halloween,

Hannah! 

Happy Fall!

Pulling up to the farm, my heart was glowing. It was Joe’s birthday party and of course, Aviva, his little sister, would be celebrated too because that’s just how things work when you’re turning eight years old and have a six-year-old sister. Aviva was in a blue dress with daisies and Joe was in a blue shirt with cargo shorts. It had been a long three-hour car ride with my caregiver, Olivia. She has been with me for three years and has taken this trip with me once before. The kids ran to the car. Driving my wheelchair out of the car, Aviva ran up to me.

“Hi, Aunt Hannah,” she said shyly.

“Is the unicorn bag for me?” Aviva asked.

“The Minecraft bag is mine!” Joe said.

“Let’s let Aunt Hannah go inside first,” my cousin, Emily said. She reached out to hug me.

This day is always so special to me. Personally, it marks the beginning of Fall. It’s still hot when I roll around with the kids in the spacious yard but there’s a nip in the air when I get in the car to drive home. Emily and Jacob, her husband, maintain a farm in southern Illinois. The kids climb trees and run in the corn fields. They have a beautiful life.

Four days later, I talked to the preschoolers at my church about having a disability and the importance of kindness. They were all so cute! After my short talk to them, they mostly volunteered information about their Halloween costumes, but some had good questions such as, “Do you sleep in your chair,” or “Who helps you drive your car?” I got to connect with a little kid who used a communication device which was so amazing. He also told me what he is going to be for Halloween. It’s a month away and it’s already quite exciting. Oh, to be a kid again!

Thank goodness life is back to normal. I’m beyond grateful to focus on contributing to my community and being fully present with my family and friends again. If you know of a school that could use a presentation on bullying, please reach out.

Happy Fall,

Hannah!