Over the years, I’ve been asked numerous times by friends and acquaintances to speak to a couple recently blessed with a child born with Down syndrome. Almost all parents who receive the news are devastated at first. Scared, then angry, then sad, then scared again.
Nothing I can say can soothe the early grief. It is the most personal,. most beautiful experience a couple can have. They feel cheated. An essential life experience has been stolen from them, and I cannot presume my words will mean much at all.
Everyone is different. Trying to tell new parents “this is how it is” is a fool’s errand. I don’t even try. What I do say, every time is, “This is how it is for us.”
I wrote An Uncomplicated Life because I wanted new parents to see something positive. When Jillian was born, all Kerry and I wanted was for someone to tell us everything would be OK. Instead, we got loads of pamphlets telling us all the things Jillian would not do. We threw them in the trash. We would allow Jillian to define herself.
This book tells you that we are OK. This is what I tell new parents: Your child will teach you more than you teach him or her, and everything you learn is essential stuff: Patience, kindness, the need to live in the moment. That unconditional love owns a special place in the lives of people with Down syndrome, and all who choose to embrace them.
I tell new parents you will have a child who will live without agendas or guile, who passes no judgment. A child who gets the big stuff right, all the time.
My mother has called Jillian “the best Christian I know.” Not because we are an especially religious family. We aren’t. But because Jillian embodies lots of qualities that would make God proud.
Who wouldn’t want to have a child like that?
I tell new parents their new child will give them gifts of perspective and tolerance. I tell them their child will force them to slow down, and because of that, blessings actually will be counted. I tell them that anything is possible when love is involved.
I don’t kid them. I tell them it’s hard work. Early intervention will run them ragged. IEPs will test every inch of their patience. Homework will leave them wondering, “What’s the use?” Sadness will happen, as their child grows and typical friends drift away.
But here’s thing: Raising any child is hard. Raising Jillian was just a different kind of hard. But oh, the rewards.
I tell new parents they will marvel at the little wins. The human spirit is a marvelous thing, a soul engine capable of just about anything. Wait until your child ties his shoes for the first time, or rides a two-wheeled bike or graduates high school. Those heart-soars are unlike anything else.
So many of life’s great moments are assumed, lost to the speed at which we live. We parents of children born with Down syndrome learn not to assume, but to savor. What a gift.
John Lennon once said, “Life is what happens when we’re busy making other plans.” Not with us. Thanks to our kids, we live more realized lives.
That’s what I tell parents.
We’re only as good as the way we treat each other. Jillian taught me that. She’s the best person I know. She was born with Down syndrome. How lucky we were then, even if we didn’t know it. Jillian is 26 now, married, fully employed, a high school graduate who attended four years of college.
Could we have imagined that the day she was born? Not that first day, no. But every day thereafter. This is what you have to look forward to, parents. I promise you.
Happy holidays to everyone. Thanks for reading.