All year, I’ve been searching for a Buddy Walk to volunteer at during our travels. It’s been something I’ve been chasing since we left for our trip on a frigid January morning. Normally we let our route, our interests, and whatever is available dictate our volunteering efforts. But this was something I desperately wanted to include.
Surrounded by color-splashed rolling hills and mountains, traversing still-in-use covered bridges that span gently flowing brooks, passing farms that are a picturesque portrait of a pastoral past, we pulled into Brattleboro, Vermont on a crisp Saturday morning. Like many of the small towns that dot the Vermont landscape, it has an adorable downtown with storybook architecture and noble homes that are exactly what you’d expect of New England, all eliciting uncontrollable squeals of delight from me as I watch these images roll by from my passenger seat perch.
Here, in a small town in the southeast corner of one of the smallest states, I finally found a Buddy Walk. Queue another squeal of delight.
The Buddy Walk program, which was established in 1995 by the National Down Syndrome Society (NDSS) to promote acceptance and inclusion of people with Down syndrome, is an event that raises awareness and funds for programs that benefit people with Down syndrome and their families.
I became aware of this program because of my buddy, Jilliann. I call her Jilly-Boo. Others call her Jilly-Bean. She’s amazing, by any name!
I fell in love with her immediately (how could you not) when we first met five years ago. She was only an infant, but had already displayed so much strength in her first few months of life. She was newly enrolled at the pre-school and daycare where I worked. Her muscles had not yet developed to the point where she could safely take a bottle without all the milk dangerously rushing into her stomach. She had a nasogastric intubation and a gastric feeding tube.
Admittedly nervous, I was now learning what this all meant, and how to feed her. So much can go wrong while feeding with a tube that could cause her anything from severe discomfort to hospitalization. I felt in over my head. But then one glance at her, with her determined eyes and sweet face looking at me, and I steeled myself and was ready to learn.
Her mother, Amy, looked at me with confidence, willing to put her trust in me.
I knew I couldn’t let these two super-women, with their own boundless strength, down.
The first time I held her and fed her, I felt a bond form immediately. She changed my life. I feel joy in seeing her accomplishments and worry incessantly during her hospitalizations.
You see, children with Down Syndrome are at an increased risk for certain health problems such as heart defects, infections, and Hypotonia (poor muscle control).
Despite my concerns, I know Jilliann is a fighter. She has been facing and meeting challenges since the beginning. She was born premature, weighing only 3lb 14oz. She spent her first 26 days in the NICU. She had two heart defects and doctors warned her parents to be prepared for open heart surgery. As time went on, doctors did periodic echocardigrams and found an ever improving and strengthening heart. Finally, at the age of 2, it was determined that no surgery was needed!
Jilly also wasn’t born with a strong set of lungs. Her respiratory system was ill-equipped to fight-off infections. She’s had pneumonia 17 times. She has been hospitalized 4 different times (in addition to her NICU stay) over the course of 3 winters, each instance involving time in the ICU. Her stays have been 17, 10, 8, and 6 days, respectively. All of them have involved her coming home on oxygen support. She also had to have her tonsils taken out and during recovery, wound up with yet another bout of pneumonia.
These challenges are all-to-common for people with Down Syndrome. Fortunately, unparalleled resolve and determination are too.
I witnessed firsthand what a warrior Jilly-Boo is. She would have a physical therapist come to our school to help with her muscle tone. I tried to learn as much as I could to help with exercises throughout the day; a rigorous routine meant to strengthen her muscles. I would remind her daily that Jillian Michaels had nothing on her. Imagine having to do workouts as an infant. I find workouts confusing and detestable as an adult, and I nominally know why I’m doing them. There was many a time she let us know that she was not enjoying her workout session. I can relate. Yet each day she left me impressed with her work ethic and constant improvement.
I will never forget how proud I was to see her walking, see her signing and then talking. As a kindergartner, she loves to read and just passed her reading quiz. She loves to learn. She wants to be a teacher just like her mom. She loves to dance. She now walks in her local Buddy Walk each year. She’s sweet and a little sassy. She’s inspiring. She’s my friend; my buddy.
Back in Brattleboro, they were celebrating their 10th annual local Buddy Walk. Jim, the director of the Brattleboro Buddy Walk since it’s inception, put us to work right away, setting up tables, seats, and decorations, then assisting with sign-ups. We spent the day as seemingly the only strangers in this community. But welcomed by the locals, and honoring Jilliann, we never felt out of place. John-Michael was even offered a spot on the bowling team of Mike, one of the walk participants. If this was our home, Mike would no doubt be our newest buddy.
October is Down Syndrome Awareness month. If you do not already have someone in your life that has Down Syndrome and you don’t know much about it, please take a few minutes to educate yourself. It is not a disease or an illness. It is the presence of an extra chromosome. More importantly, it’s something we can all learn from, and we will all be better for it.