Be Inspired!

March 2009 written for “Exceptional Family Magazine” published by “Lexington Family Magazine”.  To view the magazine online, click here

Sam’s World:  Family Learns True Value of Life from Son with Down Syndrome

When our son Sam was born in 2004, we were surprised to learn he had Down syndrome and a congenital heart defect.   When we received this news, I remember feeling like I had been punched in the stomach or had a proverbial rug pulled out from under me.  Just days after Sam was born, the local Down Syndrome Association of Central Kentucky (DSACK) reached out to us and offered resources and congratulations. We received the poem “Welcome to Holland” by Emily Pearl Kingsley which conveys a poignant message about what it’s like to raise a child with special needs: If you spend your life mourning the fact that you didn’t have a “typical” child, then you may never be free to enjoy the very special, the very lovely things about life with a child with special needs.

Sam turned 4 this year, and will proudly tell you so upon your asking him how old he is. He has blond, fine hair; bright, blue eyes, and a smile and laughter that convey the purest, most uninhibited joy I’ve ever witnessed. He waves eagerly to strangers, and yet is often quite shy at times.  He flirts with the ladies, sings wholeheartedly, uses his manners, and senses when you are upset.  He knows a ton of sign language, loves music and animals, knows his alphabet, has a great sense of humor, looks up to his big brother, and kisses his little sister gently on the head.  Sam sparkles and glistens in his everyday existence, and people are drawn to his light.  Life with Sam makes you want to dance a little jig across the kitchen floor just for the heck of it – just because it’s great to be alive!

Just like you and me, Sam’s existence encompasses so much, and yet what many people in our society will remember him by is a single aspect – Sam has Down syndrome.   And although, Sam’s extra 21st chromosome exists in every cell of his body, it is still only one aspect of the essence of who he is.  Rather than see “Sam with Down syndrome”, we see “Sam”. We’ve come to cherish that Sam, somehow, seems to tap inner reserves of emotion and the capacity to love unconditionally.  Somehow, Sam draws a richness out of the reserves of souls, and awakens sleepy lives and hollow eyes.  Sam is a treasure!

We have been continuously blessed to come across serendipitous situations and wonderful people who are willing to see the light our son shines.  Many have been open to working with us to create exciting and stimulating opportunities for Sam to grow and learn.  Sam attends preschool, participates in Kindermusik, Start Smart Soccer, the Win-Olympics, and within the next year, we hope to start him in Miracle League, Central KY Riding for Hope, Parks and Recreation’s numerous Therapeutic Recreation opportunities, and much more.  With some guidance and support, Sam can participate in most anything his siblings and peers can; but without that, he is often lost or unknowingly left out. We will forever be indebted and grateful to the individuals who are open to Sam joining in; who are willing to learn a little, or try a little, or go a little bit out of their way to help a little guy shine.

I have found that since Sam was born, everything seems much more paradoxical to me.  In ways, we are the luckiest people in the world, and in ways we are the most vulnerable.  In ways, we are much more carefree…and in others, more scared.  In ways, we see the world and what’s truly important in it with clearer vision…and in other ways, we are more confused by what we see in the world.  In ways, we are thinking about the future more, and in other ways, we are just living the present moment more and thinking less.  In ways, we feel closer to our friends and family and to humankind…and in other ways, we feel a little bit farther apart.  In ways, our life may be more difficult than many people’s lives…and yet, in other ways, it will be much easier.

I’d be lying if I said that things were always “easy” around here.  Things aren’t “easy”, and we know in some certain ways, things will never be “easy”.  But life itself is definitely much richer than it was 4 years ago.  And if given the choice between “easy” and “rich”, I would choose our path of richness over and over again.

Through Sam and others with special needs, we’re reminded that life isn’t a race governed by competition, survival of the fittest, productivity, profitability, efficiency, pragmatism, appearance, bottom line…and that there doesn’t always have to be a winner and a loser.  There is a profound beauty and serenity in the ability to simply and humbly “be”.  There is a profound richness and depth involved in cherishing all people as fully human, and nurturing them to reach their fullest human potential.

And so, what does all this rambling have to do with our son Sam, and our family’s journey with him?  I guess just that we are living and loving day to day, like everyone else.  Sometimes this is really exciting and invigorating…and other times, it is just the everyday changing of the diapers and spreading of the peanut butter.  We celebrate Birthdays, and play in leaves, and laugh and cry together.

People often remark about our patience with Sam being extraordinary. But, it is easy to be patient with Sam.  What’s much, much harder for us is to be patient with Sam’s older brother and younger sister, or to be patient with society, and systems and attitudes; with bureaucracy, fears and ignorance; with laziness, ungratefulness or selfishness.  We aren’t saints or anything – just a family who is loving, and living, and doing the best we can.

We love and admire Sam for who he is – not in spite of it!  Sam is loved purely, and deeply and profoundly.  Sam is loved by many people.  Sam is loved far beyond our wildest imaginings.

*This article may not be reproduced without permission from the author who may be contacted at info@dsack.org.