Our Unique Story

Hello, I am Lisa Gibbs, Samantha’s mother. My husband Rob and I founded Samantha’s Harvest in 2002. Along with our board members, we work hard to enhance the lives of those with Down syndrome by raising money for our valued partners and awareness in the greater community – all inspired by our amazing daughter Samantha.

A sad and fascinating backstory

Nearly 100 years ago, my Nana’s sixth and last sibling was born, and his name was Rudolfo. He was a baby with a difference; he was born with Down syndrome. This sweet new baby was immediately labeled “mongoloid” and “imbecile.” His mother, my great-nana Michelena, went against the advice of doctors and her family, and decided to bring her new baby, “Rudy,” home.

Michelena had been advised to institutionalize Rudy and forget he was ever born; she was told he would never amount to anything anyway. Michelena refused to listen. Rudy lived at home with his family until he was a teenager, but because Michelena did not have access to all the resources now available to people with disabilities and their families — and she was first-generation Italian — she was unable to give Rudy what he needed. Back then, no one knew how to help her, either. The family lived on the third floor of a three-family house, and one day Rudy threw a pair of scissors down to the street from the third floor. Michelena became afraid that he would eventually hurt somebody — or do harm to himself.

She felt the best she could do to protect him was to do what she was initially advised to do when Rudy was born; put him in an institution. Every time my Nana (Michelena’s daughter and Rudy’s sister) recounted that story to me, she would cry and tell me that a piece of her mother died the day she “put Rudy away.”

While the family consistently and faithfully visited Rudy, there was an emptiness in all their hearts.

Michelena’s Story Becomes Even More Personal

In June of 2001 our third child was born. Prior to the birth of our first child, my husband Rob and I decided together that we would not get pre-natal testing. For us, and this is a personal decision, there would be no options were we to find out about complications in the development of any of our babies. Our first son, Douglas, was born with pulmonary stenosis, a congenital heart defect that was corrected at two days of age with a cardiac catheterization – and today he is absolutely fine, as a result. We were advised that for any subsequent pregnancies, a level three ultrasound and fetal echocardiogram at 18 weeks’ gestation would be required, so that there could be a cardiac team on standby at birth.

Any baby we had could have a five percent chance of having a heart defect as benign as Douglas’ — or something more complicated. Our second child Alec was born just 364 days after Douglas with no heart defect — but developed SVT (supraventricular tachycardia) as a teenager, which was corrected with a cardiac ablation.

Our daughter Samantha Rose was born on June 12, 2001, at Beth Israel Hospital in Boston. She came into this world a wide-eyed, beautiful, sweet little bundle, all of 7 pounds 4 ounces. We were so thrilled to add a little girl to our family. With our two older sons Douglas (then 2 1/2) and Alec (then 1 1/2), our family was complete.

What We Soon Learned About Our Baby’s Health

Prenatal testing, which included level three ultrasound and fetal echo cardiogram, failed to detect any differences in the development of our new baby. But at two days old, Sam was diagnosed with Down syndrome. At nine days old it was discovered she would soon require open heart surgery to correct a complete atrioventricular canal heart defect.

Thank goodness our experience was quite different than that of my great-nana, when we heard the news that our beloved child had Down syndrome. A maternity nurse who has a son with Down syndrome came to talk to us about life with her then 11-year-old, which was tremendously helpful. I wanted to nurse Samantha, and upon hearing this, a lactation specialist was consulted. All the people who came into our experience at that time had faith in Samantha and confidence in what she could accomplish – and in turn, we did too.

We learned to celebrate small victories, like our new baby “latching on” and then nursing, which unbeknownst to me was unheard of for babies with Down syndrome, because of their low muscle tone.

After three months of nursing successfully and supplementing with formula, Samantha’s weight of 9 pounds 6 ounces was adequate for her to endure the open-heart surgery she required. We learned all about the procedure from the chief of cardiac surgery at Children’s Hospital who patiently answered all our questions at our pre-op appointment.

Sam’s surgery was scheduled for September 11, 2001.

Just as the unimaginable events that unfolded that dark morning would bring our nation together in horror, grief, and ultimately hope, Rob and I were brought together with our family and friends in fear, love, and ultimately hope from the little miracle that is Samantha Rose.

A Poem That Spoke to Me

Samantha’s recovery was benign, and she was home just four days later. The day after Sam was born, a friend of ours who was looking for resources to support our family sent us this beautiful poem by Emily Perl Kingsley, called “Welcome to Holland.” I am often asked to describe the experience of raising a child with disability — to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. The poem sums it up beautifully.

 

When you’re going to have a baby, it’s like planning a fabulous vacation trip — to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around … and you begin to notice that Holland has windmills … and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy … and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away … because the loss of that dream is a very very significant loss.

But … if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

©1987 Emily Perl Kingsley. All rights reserved.

Our Goals

Until people with Down syndrome are welcomed in their schools and community, we have work to do. Until health care providers have up-to-date research about the positive, healthy life people with Down syndrome have the potential to lead, we have work to do. Until appropriate funding is available to support people with developmental disabilities from a young age, with the goal of a more independent life, we have work to do. Until we completely obliterate the terrible word “retard,” we have work to do. Until all people with differences have friends and fulfill their need for love and belonging, we have work to do. Until person-centered language is the norm, we have work to do.

Everything I do, I do in honor of my great-nana Michelena. It is a lot of work, but it is a labor of love. I am so privileged to be Samantha’s mother, and I learn from her every day. She is my Rembrandt – and I wouldn’t have it any other way.