NRL News

The Happiest Music on Earth

by | Mar 19, 2021

By Erin Mersino

Jacob’s brother Christian lovingly kisses his forehead
while they play in the bathtub.

Everyone  has feelings that fill their soul with warmth, wonder, and excitement. Whether it is catching a glimpse of beams of sunshine pouring through a window just right, or the feeling of knowing you are about to fulfill a goal you’ve been working toward.  Those moments that make your heart pound, make you stop and notice the beauty in life for just a moment, or moments that make you hear music in the silence of your day.  Those moments  describe what it is like to have a son with Down Syndrome.

My son Jacob has Down Syndrome.  And he is perfect.  He is stunningly good and truly beautiful.

Thinking back to almost three years ago, I recall a dark exam room where an ultrasound technician repeatedly clicked and typed, trying to record all of the abnormalities on the screen.  As with most children diagnosed with “chromosomal abnormalities,” my son’s pre-natal visits and diagnosis sparked a deluge of fear.  

The unexpected news, the fear of the unknown, the fear of what seems known–it robs expectant parents from enjoying the present moment. Those apprehensions send them into uncharted territory as they careen between the unchangeable past, the moment of the diagnosis, and the imagination of what might become of the unforeseeable future.  And when one lives in the past or fills the present moment with anxious questions about the unknowable future, the crowding prevents one from truly realizing life.  

Wasted opportunity, and especially the failure to recognize the goodness right before our eyes is, unfortunately, nothing new. But in few areas is this as true as our society’s incorrect view and misplaced negativity surrounding a Down Syndrome diagnosis during pregnancy.  

In the Thorton Wilder play Our Town, after the character Emily dies, she requests to return to her life for just one day to experience it just one more time. Emily returns to a day she remembers as especially happy, her twelfth birthday.  Yet, upon experiencing this day again, she quickly recognizes that no one takes the time to live in the moment or be grateful for what they have.  

Emily asks, “Does anyone ever realize life while they live it…every, every minute?”  Wilder answers Emily’s question by stating, “No. Saints and poets maybe…they do some.”  

But here is the secret that almost no one knows. There are extraordinary people in this world, such as my son, Jacob, who have exceptional ways of helping the rest of us become, in our own way, saints and poets.  

Jacob, receiving a protective hug from his brother Christian,
lights up the world with his smile.

My son teaches others how, instead of fearing the unknown or the different, to cling to and obsess over a much underappreciated virtue: gratitude. He greets each day with a smile and infectious laughter.  He blows kisses to all the friends he makes, and he makes friends everywhere we go.  He hugs with his whole body.  He wraps his arms and legs around me, embraces my thumb with his whole hand, and loves tucking his face into the curve of my neck to rest his head.  

Jacob articulates words like “mom,” “dad,” “love you,” “hi,” “bye,” and enjoys using some sign language.  He has the unique ability to communicate the love that overflows from his heart and has the uncanny ability to make others feel loved and special.  He loves to plant kisses, on the lips and to blow kisses, making a loud “mwah!”  The sound of his laugh when he is playing with his brothers creates the happiest music on earth.  He plays with his brothers like any other kid: they wrestle, they look out for each other, and they joke around.

The truth is my son has the amazing ability to pull others into the moment and help them fully experience the true joy of every minute.  

His world is calm and filled with a jubilant sense of wonder.  He immediately expects the best of others, treats everyone as important, and delights in sharing his kind heart.  He shows us that no person, no matter how small, is ever inconsequential.  He loves others and loves even the simple adventures of life, like the explosion of tickles he feels when someone brushes the bottom of his foot with their finger.  

Jacob constantly reminds us that life is beautiful and meant to be lived–not in the regret of yesterday or the worries of tomorrow, but in the joy of this very moment. Sharing your heart, completely, with unbridled love, reaps a real, intangible treasure.  

Life with Jacob feels like a pointillism masterpiece. He creates moments filled with colorful dots of joy.  He helps all around him to actually realize life while they live it.

Every minute.  

Jacob is the sunshine.  He is not the least of these, but the greatest.  And his love casts a light onto others that makes them greater as well.  

Editor’s note. Erin Mersino is a Constitutional Lawyer specializing in First Amendment law, fighting for religious freedom and freedom of speech.  She lives in Michigan with her husband and five sons.

Categories: Down Syndrome