A huge and relatively recent influence of mine is Scott Dinsmore of Live Your Legend. His podcast, “How to find work you love,” highlights one sentence that impacted me in a gigantic way. In it, he asked, “what is it that you can’t not do?”
“What is it that you can’t not do?”
After pacing around my apartment in Paris, France for a few…days….talking to my only friends that were in town that week -the two cats who also lived there- I found my answer.
When I speak, write, or paint -highlighting the beauty that is in every human of all abilities- through the successes and failures, accomplishments and challenges of my inspiring sister Leah, that’s what feels right. That is what has consistently woven itself through my 27 years here. That is what has been the most natural part of who I am. Telling Leah’s story and turning perspectives Upside Down. That is what I can’t not do.
When I was 5, I wrote the story, “My Sister’s Special.” Five.years.old. In it, I wrote, “sometimes Leah gets frustrated because she can’t ride a two-wheeler. But that’s okay because someday she will learn how. I love my sister Leah because she is special. She loves me too.” I was five! Where was this insight coming from?
Telling Leah’s story and how the world can be brighter through it has been in me, and through me, and a part of my entire life.
First grade came along and I asked my principal if I could present to my entire elementary school, one grade at a time, educating them on what Down syndrome was. This is one of my earliest vivid memories. I remember being exhausted at the end of the day, lying on the floor at Hitchcock Elementary with my little flowered dress on, but it just felt right.
Just a little first grade girl, in a flowered dress, presenting to my elementary school about Down syndrome
In third grade, I was first published. The topic? Leah. My 9-year-old self wrote, “I am lucky to have a sister like Leah. I have learned a lot from her. Leah has been blessed with something very special that she will always have with her.”
Even in 1998, Leah was helping me to look at situations Upside Down.
Throughout high school and college, Leah and Special Needs awareness was almost always an underlying subject of my writing, projects, paintings, and internships.
Leah and I at one of my art exhibitions, the subject of my work being awareness of the abilities of all people. And yes, I was that tan. STAY OUT OF TANNING BEDS PEOPLE.
In 2011, I decided it was time to aim higher. I sent a letter to NBC’s Today Show about my sister, entering a contest to tell her story. We ended up being selected and our family was flown to New York, where they aired a 30-minute segment on Leah, culminating with her playing a piano song with a Broadway composer in which Kathie Lee Gifford wrote the lyrics.
There I sat, on The Today Show couch, holding Kathie Lee Gifford’s hand and ugly crying on national television, thinking, what is actually happening right now? Yes, it still felt right.
Fast forward five years and Leah and I are finally embracing and pursuing writing, performing, and spreading awareness of the beauty and love that is in all people, places, and moments through our blog Upside Down. And guess what? It’s feeling right. I can’t wait to be a part of the journey as it evolves. I can’t wait to grow, and share stories other than just mine and Leah’s – shedding light on so many amazing people and their stories of beauty, love, and seeing things Upside Down.
So excited about our Upside Down cards! Thanks Stacia!
Pursuing the work you were meant to do reminds me of my mom. Throughout her life she has held so many careers, trying to answer the ever-pressing question that we have been drilled on since preschool, “what do I want to be when I grow up?” She has worked at a bank, a radio station… she has worked as an IT Analyst for a hospital. She was an Employment Support Specialist for people with Special Needs. Oh and there was that time she started a flower arrangement business and toured around craft fairs. You name it, she’s dabbled.
All the while teaching piano, her passion, ON THE SIDE. Finally about two years ago, she realized that those other jobs came and went. She learned, struggled, was challenged…then moved on. But teaching piano? THAT is what she can’t not do. She finally embraced this and became a full-time piano teacher.
The result? You guessed it…it not only felt right, it was right. Her piano studio is thriving, with over 30 students who she impacts with her skills daily.
Performing piano has been a part of my life for a very long time. As long as I remember and I love to make people feel happy who listen to me play. I also love to sing and dance and act in plays for them too. My Sister Lindsay helped me and here are some times in my life that we found over the years when I wrote about my passion in various Biographies and Articles and things like that.
Here is me performing for my classmates at Bryan Elementary School
When I was 12 Years Old I wrote a Biography and in it I wrote this:
“I take piano lessons. I have been taking them for about five years. I really like to play duets with my mom. I also like to perform for my classmates at school.”
I love to act silly and goofy with my sisters and pretend to be a famous singer and dancer like Celine Dion.
When I was 15 Years Old I was featured in the National Down Syndrome Congress Headline News Article and this is what I wrote:
“Something I love to do is play the piano. I have been in lots of recitals and have also played in piano competitions. I started piano lessons when I was in first grade. I practice every day after school. Memorizing songs takes a lot of Hard Work, but I can do it…I always love to perform for people.”
When I was 22 Years Old I was featured in another National Down Syndrome Congress Headline News Article about my piano playing:
“Music is a big part of my life. I especially like to play the piano in front of a lot of people and encourage others to play the piano. That makes me feel very special inside. I just stand up there with a big smile on my face, walk to the piano, and start to play my piano music for them. My mom gets nervous to see me in large performances.”
When I was 26 Years Old I started my speech at the Starry Night Gala as the guest of honor like this:
“My dream is to be a piano performer, so thank you to the Ollie Webb Center for letting me be a part of this event.”
I just turned 34 Years Old on July 1 and I still love to play piano and do music performances for people. I love to travel to cities and meet a lot of people from everywhere and all over the United States. I have been working on piano and performances for my whole life. Every person and Every child has a dream and anything and everything is possible if you try and practice a lot and do hard work and dedication.
Here I am volunteering and performing for people at the hospital
Our world needs people of all skills. I think it’s important to note that one doesn’t have to pursue a career in a creative field to do impactful work. Being an honest, positive, kind person rooted in love in any work situation -from an office building to a hospital to a coffeeshop- that is where the impact lives. When we combine those qualities with the natural skills that have always been a part of our individual journey -this could be ANYTHING…from being gifted in math, being an excellent listener, dedicated to raising children, or having a very steady hand. Now that is when the magic happens.
As the incredible people at Live Your Legend have encouraged me to ask myself, I now ask…What is it that you can’t not do?
Here’s to turning our minds Upside Down.
I just love everything you write, every time. Good work you both on touching poeple’s hart.
This may be my favorite post so far. I suspect your topic will not only influence those with special needs siblings, children or friends–but others who see that living your passion is possible. And maybe your true passion is sitting in the open from childhood, waiting to be rediscovered…