The Gift of Down Syndrome

Today we welcome back long time GiGi’s Playhouse friend and advocate, Richard Riley.  Grab a cup of your favorite beverage and enjoy some encouragement.

Dear Friends in the greater Down syndrome community,

You’re probably already thinking that this guy is completely nuts.  How can Down syndrome be a gift?  Let me confound you further: the origin of this blog is my diagnosis of cancer in the summer of 2018.

I remember sitting on the exam table in the little room, Marilee (my bride) seated quietly in a chair.  After three separate biopsies, we were anxiously awaiting the results of the pathology report.  Dr. Dibble came in, paper in hand, and apologetically announced that I had classic Hodgkin’s Lymphoma.  It was a shock.  It was personal.  My reaction?  I stepped off the exam table and held the doctor’s hands in mine.  “Jacquelyn, there is no apology necessary.  Your work has helped define the course of the rest of my life.  Now I know what we are dealing with.”

As we pulled onto the highway that June morning, I was resting comfortably in the passenger seat.  All of a sudden, I broke down with uncontrollable sobbing.  Marilee consoled me, thinking my diagnosis had hit home.  She was partially correct.  Our lives turn on a few words.  What I was experiencing, though, in a new and personal way, was akin to what my daughter Jennifer and her husband Lou, must have felt ten years earlier as the doctor told them their third child would be born with Down syndrome.  What I had perceived then as a lifelong sentence of sadness for “Louis” and his family, was quickly dispelled as Jennifer declared, “I will find a way.”  Jenny’s words were galvanizing. This quiet reserved person would emerge as our standard bearer of love.  She chose love and normalcy for Louis, and so did we all.  And as for me, a fellow content to remain in the background, my own advocacy began and grew from that day, joining with thousands of others in moving the curve forward for all living with a disability.

During a low point in one of my frequent hospitalizations this past year, I recall wishing I had done more in advocating.  Miraculously, I am now in remission and have been blessed with precious time to do more.  Having faced the fragility of life, I feel emboldened to share my story with you.  There is a world in need of hearing our stories. It is my hope that some readers will be inspired to explore their own potential and courageously step forward in action.  “i have a Voice” is not just about a person with Down syndrome, it’s about all of us.

I was born in 1945.  During the 50’s, if the term Down syndrome was mentioned there were a few words which automatically came to mind:  retardation, mongoloid, institution, etc.  Generations were prejudiced by these stereotypical words.  There was one more: “they”.  Somehow this collective term relegated those with Down syndrome to anonymity, convenient to dismiss from society.  It wasn’t until years later when Jenny’s friend was raising two boys, Ryan and Kyle, with autism, that it dawned on me:  “They” were individuals, which changed the equation for me.

Labels don’t apply.  Labels are detrimental.  Labels obstruct equality.

Fast forward to the summer of 2010.  Marilee and I went along as babysitters to the National Down Syndrome Congress in Orlando, Florida.  While Jenny was attending sessions and Lou, and Marilee were at the pool with Abby and Maggie, I packed Louis into the stroller and we were off on an adventure.  The cavernous corridor leading to the exhibition center was quiet save for a young woman seated alone on a bench.  As we approached her and said hello, I instinctively took Louis out of the stroller and placed him in her arms.  She was from Wisconsin.  Her six-month-old was at home with her mother.  She explained how lost she felt having a child with Down syndrome, not knowing what to do.  This convention, she hoped, would have some answers for her.  I confessed that I knew little about Down syndrome, but, I said, I knew a lot about love.  I shared what I had learned by participating in Early Intervention.  My listening and support made a difference in her life.  And an epiphany occurred in mine.  I went to Florida a babysitter and returned home an advocate.

In 2011, Jenny became President of the Board of Managers for the newly forming GiGi’s Playhouse, New York City.  To that date, the big city had presented obstacles on many fronts  —  perhaps Mom and Dad could help?  Together with Jenny and the newly hired Executive Director Britt Sady, we arrived in a Chicago suburb for the November GiGi’s Playhouse National Conference.  The theme was “Stronger Together”.  We came back to New York energized and in February of 2012 we opened the doors to the tenth location for this marvelous organization: GiGi’s Playhouse, NYC, in Harlem!  Each contribution is significant.  The doors to Playhouses #44, 45 and 46 are now opening.  This phenomenal growth is due to the initial action of one person: Nancy Gianni.

My advocacy grew a little at a time.  I joined the Board of Managers and worked with every phase of developing the playhouse.  We sent our own “GiGi’s delegation” to assist in organizing “World Down Syndrome Day” at the United Nations (March 21, which symbolizes the “3rd“ copy of the “21st” chromosome responsible for Down syndrome).  There at the U.N., surrounded by people from around the globe, I realized that my simple blogs telling real stories of Down syndrome could bring someone hope across the oceans.  Down syndrome, after all, is found in every country on earth, and every time I get to hear a story about yet another amazing person with Ds, it brings me hope for our Louis.

I began to work more actively in outreach, representing GiGi’s at college career days and other networking events.  In 2012, I was privileged to lead the Grandparents Seminar at the NDSS Congress in Wahington, D.C.  While there, I took a turn at the GiGi’s Playhouse exhibition booth.  Melissa, from the start-up committee to bring a Playhouse to Nashville, stopped by our table.  I invited her to sit with me – behind the table.  We had an engaging conversation about the struggles to reach milestones and of recommitment.  She was surprised to hear me say that at times I had to recommit.  We parted, each with renewed spirits.

During the summer of 2013, Marilee and I traveled nearly 10,000 miles, visiting the Playhouses of the Midwest. We gave inspiration and were likewise inspired.  I wrote a travelog of our journey and was honored to speak that year at GiGi’s National Conference Banquet.

A couple of years ago I sent in a short paragraph to the CNN Heroes Program.  Nancy Gianni, our beloved founder of GiGi’s Playhouse, was selected as one of that year’s fifty CNN Heroes.  GiGi’s Playhouse received international recognition…..put in motion by just a few simple words from a volunteer.

During the course of my advocacy for GiGi’s Playhouse, I have particularly enjoyed communicating and sharing information with developing Playhouses.  As my health improves, I look forward to getting on the road again.  I relish the thought of touring your Playhouse, listening and interviewing you – helping and encouraging you to tell your stories.

My grandson Louis is now ten years old.  A burden?  A life of sadness?  No way!  One thing is certain: having a family member with a disability is no picnic, but in our case, neither is it all about Down syndrome.  Louis’ life is about ability. He will proudly tell you about his prowess at basketball, and how about a triple flip underwater!  He wants to run a restaurant, get married, and have three children.  We talk openly about my cancer and his celiac disease.  He is becoming an authority on a gluten-free diet.  Louis is my doctor.  He has walked along beside me in hospital corridors, providing security and encouragement. Once he heard Grandma on the phone mentioning some of the side effects of my chemotherapy.  “Give Poppy prune juice!” he shouted.

Dear friends, progress is slow in the disability community, but we are making strides in acceptance and inclusion.  Now when I hear the term “Down syndrome” I think of family, achievement, and celebration.  And one more word:  “individual”.

“I will find a way.”  It’s what we do at GiGi’s Playhouse.  I’ve been blessed with the gift of a voice to speak up alongside my comrades with Down syndrome (what great self-advocates they can be!). A gift is something to be shared.  What gift do YOU have to share?  I /we invite you to join the GiGi’s family.  Come and be a builder of quality of life.  Call or stop by a GiGi’s Playhouse location, attend a volunteer orientation.  Here’s a link to the website:  www.gigisplayhouse.org .  Send me an email if I can help, especially if you’re a grandparent.

Together we are searching for answers.  You don’t need to know a lot about Down syndrome to make a big difference.  What’s important is that you know a bit about love.

Richard Reilly

The Grandparent Connection

richardreilly@hotmail.com