March 21st each year is World Down Syndrome Day. I’ve been thinking this week about the people who have touched my life… who also have Down syndrome. Considering all the years I’ve been teaching, I have actually not known many people personally with Down syndrome. You’d think the extra chromosome on the 21st pair affecting all or some of the cells in the body – such a unique genetic configuration – would cycle through the humans I’ve known and loved more than just six times in my life.
Of course, I’ve seen more than six people with DS of all ages and in all settings and know many folks with whom I share a kinship through our familiar association as a family member or teacher. I sense an instant connection with others who are also part of my network of family or who have been touched in some way by the one with DS in their lives. We connect with a smile and exchange a few words or even stories to add context to our meeting – finding each other by merely being in the presence of a very significant person who has changed our lives by just being part of it.
It just takes one person with Down syndrome to alter perspective on life’s everyday experiences; and though these folks have similarities, it is their uniqueness that always captures my attention and makes me smile…not a corner of the mouth curled upward…but a smile that fills my face and spreads light through my chest. It’s not the overall profile that strikes me and stops me in my tracks – like when reviewing a resume or checking boxes off on a grading rubric. Instead, it is that I simply and somewhat unexpectedly don’t want to miss the finely-tuned details of what is shared so enthusiastically and so importantly before me…
So, today, I recount some of these moments of uniqueness to which I have been gifted when among friends (and family and students) who also have Down syndrome…
Elizabeth was the most independent and adult-like middle schooler I have ever known. She often shared her stories and freelance journals with me full of hope and positive words. She fell lost in her books and imagined herself within their adventures.
Erin loved to sing and sang before she talked. She engaged others around her in singing with her who would never have dared to allow anyone to hear them sing aloud and in public but did so joyfully with her just because she asked and expected an immediate response. She always ended the performance with a “Good job!” calling the person by name and adding “funny bunny” rabbit ears – her ultimate sign of approval…one that must be earned. I hear her silly voice in my memory and feel her in my heart each and every day.
Rachel is full of passion for people, ideals..and of course, music! She touched my heart the afternoon I met her when she came to speak to my evening class. It was a small graduate class, and we planned to all meet for dinner first, so we could enjoy her company and the fellowship of each other which included Rachel’s dad. As Rachel and I strolled out to the parking lot, we talked about our love of the Beatles. We locked arms and sang our favorites all the way to the restaurant. Rachel intrigues me with her thoughtful reflection, elaborate vocabulary, and heartfelt self-expression when we talk. She holds a special place in my heart, and I truly enjoy our occasional phone calls since our Longwood LIFE days together.
Zach is the earliest arriver to Longwood LIFE…packed and ready for the day. He jumps out of the car ready to show me his fitness center work shirt and his Longwood gym clothes. He always has a Mt. Dew in tow and greets others either signing an “I love you,” or cupping his hands like a heart. He shares his favorite videos or pictures of his adorable niece, who equally adores him. He constantly surprises me…like on last Wednesday when he beat everyone else’s time on an office vocational task by 3 minutes counting each step aloud, looking to see if I was watching, and adding an approving “Yeah!” when he finished…no prompting needed throughout the entire process. I had no idea he could do it so perfectly. We giggled. Diana and I think of Zach everyday as we walk by the house in our neighborhood that has a car parked in front with the ASL sign decal on the window meaning “Hang loose.” We turn to each other, do the sign, say “Hang loose”, and think of Zach, who reminds us daily in Longwood LIFE not to take ourselves too seriously.
Diana is the master of keeping track of small details for everything from sports stats to ages of famous people in movies or TV shows. She goes over the details in preparation for upcoming events including packing and unpacking book bags-frequently switching and repacking – laying out what she will wear to the next event on her bed as if she were inside it. She navigates streaming platforms on our TV and her computer with ease and is readily available to help her parents with these important tasks. From the time she was very young, she colored figures in coloring books with colorful gel pens dividing the space into small sections to color like a mosaic picture. With great determination and detailed printing, she copied yearbooks during her middle school years and once copied a science textbook over the span of a year. She has spent time during this Pandemic Year coloring these intricate pictures to give to people she loves to encourage them. She now is able to read spread sheets of ISBN numbers with section codes at the Longwood Barnes & Noble Bookstore to pull textbooks off the shelves to pack up to send back to publishers. She is my everyday sidekick and my walking buddy. She always reminds me I am loved.
Thomas sits across from me at lunch in Dorrill Dining Hall on Longwood LIFE days. He enjoys the social activities surrounding the dining experience even more than eating and never misses an opportunity to meet a new college student or make a new friend. He double teams the social scene at our table with daily calls to his adult siblings at work to check on them and go over the details of their days. He looks up and lights up with a “How ya doing, Brady?” when his favorite friend and peer mentor joins our table. Thomas is on top of his game when sharing music on his phone and stories of weekends at the lake. Just this past Friday, I enjoyed his explanation about how to catch a fish and cook it to perfection down to the seasoning recipe. I always learn something new from Thomas – including new dances. Sometimes, he invites others to join him – extending a polite invitation and a hand extended while on one knee. I love the times I see him just walking down Brock Commons with his headphones on and a jig in his gait as we move around campus. He reminds me to feel the music of life in the moment.
So, to celebrate World Down Syndrome Day on this March 21st, I’ll sing that song that makes me happy, take that walk with my sidekick to “hang loose”, reflect on the people who impact my life in the smallest and grandest of ways…
And I’ll dance.😊
Sorting it Out... 