Our youngest son, John, was born in the middle of the night in a community hospital.
Moments after his birth, I held our newborn in my arms as I had his two older brothers, bent over him and wept with tears of joy.
He was so tiny, yet immense, as if he contained the whole universe. Forget exhaustion; my wife and I floated on the joy our son’s birth gifted us.
A short while later, the covering OB-GYN came to speak with us.
“I am so sorry. I have bad news. It appears that your son may have a slight case of Down syndrome,” she told us, and then left the room without saying anything else.
We came crashing down. What did this mean? He was our boy, our son; how could anything be bad? Her tone and her words were devastating.
We knew people with Down syndrome – my wife had even worked in a group home one summer in college – and we knew we would love him no matter what. But we were at a loss. What was happening?
We held each other tight and whispered that we would be all right.
As the sun came up on John’s first day of life, we began to get calls and visits from family and friends.
Many grew quiet and somber when they learned that John had Down syndrome. Then we started to hear a line that many parents of a child with a disability hear: “God only gives a burden to those he knows who can handle it.”
Though this sentiment was probably meant to be encouraging, it was not. I wanted to scream. Our son was not a burden. This was not bad news. And what a view of the cosmos! Like God is floating around in the clouds and when he sees a family doing well, he throws down a thunderbolt of misfortune as if to say, “Let’s see if you can handle this.”
The nurses and staff also grew quiet when they entered the room and spoke in voices loaded with pity.
Later that day, a close family member visited. She meant to be reassuring when she said: “Maybe he could grow up to get a job pushing a broom at Burger King.” I left the room so no one would see me cry.
No one said anything like that about his brothers. When I held his brothers in my arms, I believed anything was possible for them: They could grow up to play centre field for the New York Yankees; they could go to the moon; everything was laid before them. Now, I was being told that John’s life would be different, would be worse – that his life would be small.
Other medical professionals continued to layer on the gloom and doom. In a consultation with a cardiologist (John, like roughly half of the people born with Down syndrome, was born with a significant heart defect), we were told matter-of-factly: “You know, they try to save many of these babies nowadays.”
John is now 27 years old. He thrived in school, even earning recognition as Student of the Year at the tech school he attended as part of his high school education. He has participated in the Special Olympics since age six and has a wall full of the medals he has won.
Unable to find meaningful work when he finished school, John came to me and said he wanted to go into business together. He suggested that we start John’s Crazy Socks, which we bootstrapped into the world’s largest sock store. More than half our employees are differently abled. The child who could not speak and needed to learn sign language to communicate is now an in-demand keynote speaker and has testified twice before Congress, spoken at the United Nations and been named EY Entrepreneur of the Year.
John offers one example of how fulfilling life can be for a person with Down syndrome, though there are countless others. That first night in the hospital, we needed to hear it straight – “John appears to have Down syndrome, which we will confirm with genetic testing” – but more importantly, we needed to hear “Congratulations!” We needed to hear, “What a joy!” We needed that doctor to say that you have just begun down a path that will bring you so much happiness.
“We do not know the paths our children’s lives will take. We need to hear how wonderful and rich the journey will be. We should not hear the route is limited before our child takes a first step.”
We are not asking doctors and medical professionals to shy away from providing necessary medical information.
A child born with Down syndrome is likely to face a number of significant medical challenges. John required a bowel resection on day three of his life and open-heart surgery before he reached three months, but these medical interventions are available. And a child with Down syndrome may need physical, occupational and speech therapy that can begin as early as the first year.
These demands can overwhelm parents, so receiving the right information and encouragement from health care professionals and connecting with a support network becomes even more important.
John and I want to change the way the world thinks about people with Down syndrome. We learned firsthand the critical role that health care professionals play in setting the right tone and getting the right information to parents of a newborn with the condition. Making this possible requires two steps:
- Health care professionals need to know of the full life that a person with Down syndrome can lead and how to speak to parents of a newborn child with Down syndrome.
- Parents need to be connected to resources and networks where they can get information and support.
Our medical schools and institutions (hospitals, health centres, etc.) should help health care professionals understand the reality of Down syndrome, not bad clichés from decades ago. John and I are regular speakers at the dental program at the University of Houston, and that’s one way for doctors and other medical professionals to better understand the life of a person with Down syndrome.
The National Down Syndrome Society and their state and local affiliates offer extensive, easy-to-understand educational information for providers, parents and families and can connect people with local networks. A wonderful organisation, Hope Story, which was founded by the parents of a child with Down syndrome, one of whom is a paediatrician, understands the urgency and importance of educating providers and offers resources and training for medical professionals, and it will connect parents with local networks.
Many states are now passing legislation or establishing regulations to provide better information to parents as well. In New York State, Assembly Bill 4138 requires health care providers to distribute accurate, up-to-date and widely accepted information developed by national and local Down syndrome organisations. If passed, the bill would provide information on hotlines specific to Down syndrome, relevant resource centres and contact information for national and local Down syndrome organisations.
Our three boys are all adults now. On the days of their births, we never could have foreseen the paths they would take. Each had some heartache and disappointment, but each has enjoyed marvelous moments of self-discovery, and each has brought meaning and purpose into this world. As parents, we are so fortunate to watch them become the individuals they are.
We do not know the paths our children’s lives will take. We need to hear how wonderful and rich the journey will be. We should not hear the route is limited before our child takes a first step. Their experience may be different, but not less.
Here is the greatest truth about all three of our boys, but especially John: He has made me a better person. He made my wife and his brothers better people. That is what parents should hear: “You are fortunate because your new child will lift you and make your life better.” You should hear about the joy your child will bring to the world.
On John’s first day of life, the people who knew best were his brothers, Patrick and Jamie. Only six and three years old, they responded with excitement and giddy laughter. They elbowed each other to see who would get to hold John first. They were curious about Down syndrome, but the only thing that mattered to them was they had a new baby brother.
Here’s what I ask: Act like John’s brothers. When you see or speak to those parents with a newborn, celebrate as you would the birth of any child. Shout “Congratulations!” Bring flowers and balloons and an energy of excitement. Cherish the life and the opportunities. Never be blinded by potential limitations ― always be awed by the possibilities.
Mark X. Cronin co-founded John’s Crazy Socks, a social enterprise with a mission to spread happiness, with his son John. The pair bootstrapped the business into the world’s largest sock store, earning them recognition as EY’s Entrepreneurs of the Year. Mark is a leader and entrepreneur who founded a software firm and led health care management and technology firms and several consulting firms. He has also organized political campaigns. Mark has spoken before Congress and the UN, given multiple TEDx talks, and is a sought-after keynote speaker. Along with his son and co-founder John Cronin, Mark is a fierce advocate for the rights of the differently abled.
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