NRL News

World Down Syndrome Day: what makes a person happy and fulfilled?

by | Mar 21, 2019

By Erin Mersino

Editor’s note. Friday is World Down Syndrome Day which is intended to “create a single global voice for advocating for the rights, inclusion and well being of people with Down syndrome.”

“Wow! That baby is tiny! How old is he?”

“Almost two months old.” I reply.

“That’s weird. He’s so small.”

“Well, he has Down Syndrome, so his growth is a little bit slower but his cuteness isn’t lacking.”

“Yeah. Huh…I guess he’s just a baby,” the man supposes, now smiling as he examines my son’s face.

A small part of me wants to respond, “Just a baby? He is a miracle!” Yet, my enjoyment of the exchange silences that quiet voice. I appreciate the man’s unfiltered, workingman’s candor and his simple and palpably honest conclusion.

Last year my husband and I learned that we were expecting a son with a chromosomal abnormality. The prognosis at first seemed grim. Doctors gracefully explained the numerous malformations and abnormalities detected on our ultrasound, the potentially fatal issues with our baby’s heart, and, through pre-natal testing, we learned there was only about a 1% chance that our son would not be affected by Down Syndrome.

The man I encountered the other day might have described the news with, “that’s weird.” I describe it as fate abandoning us in an unforeseen habitation, one to which we had booked no reservation nor expressed a preference to reside. A new knot being tied tightly inside the center of my gut as each second passed. My heart, a firecracker at its pinnacle alone in the black sky, bursting at every beat. My husband and I glanced directly at the merciless giant of a diagnosis that had captured the bright image of our son that shined brightly in contrast to the dark backdrop of the ultrasound.

March 21st is World Down Syndrome Day. But instead of focusing on what Down Syndrome is and the statistical and medical knowledge surrounding such a diagnosis, I ask a heartfelt question: what makes a person happy and fulfilled?

My simple answer is my son who has Down Syndrome. He, along with each of my five children and husband, is my life’s greatest blessing. Since his birth, instead of a firecracker’s explosion commanding its faded and burnt remnants to the ground, my heart is now a cataract abundant with the decisiveness and magnanimity of gratitude.

I’ve experienced the joy of unearthing one of life’s greatest and veiled secrets. Life is not about what is normal or easy. It is about the “weird.” It is about the rapids. And it is most profoundly beautiful in the paradox.

In the months prior to and since our son’s birth, I have read and watched countless stories about the achievements of people with Down Syndrome. Each account teems with the raw triumph of the human condition, the ability through great love and tireless work to achieve the unbelievable.

I have watched John Franklin Stephens, an actor with Down Syndrome, testify to the United Nations with strength through his stuttering to share his amazing journey of acting on an Emmy-nominated TV-show, being invited to the White House, and passionately explaining that his life bears great worth.

I have watched…

Zhou Zhou, a conductor with Down Syndrome, leading an attentive orchestra following his every move to play a beautiful symphony; Madeline Stuart, a model with Down Syndrome, confidently walking down the catwalk at New York’s Fashion Week and gracing the pages of Vogue magazine;

Amy Bockerstette, the first athlete with Down Syndrome to earn a college scholarship, golfing at the PGA’s Phoenix Open with Gary Woodland and donning a huge smile as she sinks a long putt for par after hitting the ball out of the sand. Not discouraged by the sand trap, Amy unassumingly explains to the crowd and to the professional golfer “I got this.” Amy’s video has gone viral, and Golf Digest dares you to try to watch the video without “cry[ing] through your joy.”

So, why the happy tears? Because seeing people overcome nearly insurmountable challenges to achieve their dreams makes us realize, simultaneously, both overwhelming beauty and painful awe. We recognize the beautiful truth that we too might achieve our dreams with hard work, passion, and love.

But these accounts also expose the realization that these achievements are the result of a love so great that many never encounter. These remarkable people with Down Syndrome achieve greatness through the outpouring of unwavering support, the unconditional love of a parent, the untiring devotion of a teacher. These stories show the confluence of the beautiful in life—pure individual courage to reach beyond what is expected to achieve greatness and hours of selfless work to support that courage.

We are all made for greatness, but so often, we let ostensive difficulty direct our path. These stories show the amazing result of surpassing the difficult to obtain the near impossible.

Jacob and his older brother, Justin

I know these are grand statements. But I do not look at my son’s life through rose colored glasses, but instead through the plague of realism. My life has not been immune from difficulty. I have endured significant hardships, mourned the deaths of my loved ones, have been on the receiving end of mistruths and even physical violence, have received financial bills I could not pay, cared for my handicapped sister on her bad days. I have survived many challenges, just like everyone has.

And I know that my son will experience frustration, health problems, issues with his speech, and need physical therapy. I know there will be setbacks and heartache. I am girding myself for the day when someone calls my son a retard, and I am hopeful that when that happens he is able to utter, with a twinkle in his eye and a smile on his face, the words of the age-old retort to name calling, “It takes one to know one.”

But for now, I am smelling his distinct homecoming fragrance common only to babies, holding his miniature hand as he grasps my thumb, rubbing the bridge of my nose on the top of his head that feels like the softest suede, and reveling in the glory of seeing how loving him makes everyone around him a better, more accepting person.

Realism need not be estranged from hope and joy, and it is realistic to expect that the difficult or seemingly impossible trials yield the greatest reward. So, in honor of World Down Syndrome Day, consider celebrating by loving bigger, embracing the weirder, supporting the overcomers, and being an overcomer.

And when you see a person with Down Syndrome, consider calling him or her by an appropriate name, such as a miracle.

Categories: Down Syndrome