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. Some parents who receive the news are devastated at first — they might be scared, then angry, then sad, then scared again.
Nothing I can say can soothe any early grief these parents might feel. I believe it is the most personal experience a couple can have, 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 our daughter 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.
The book tells you 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. I believe that unconditional love owns a special place in the lives of people with Down syndrome, and all who choose to embrace them.
My mother has called Jillian “the best Christian I know.” Not because we are an especially religious family (we aren’t), but because she believes 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 anything is possible when love is involved.
I don’t kid them. I tell them it can be hard work. Early intervention might run them ragged. IEPs could test every inch of their patience. Sadness might happen as their child grows if friends drift away.
But here’s the 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. I believe we parents of children born with Down syndrome learn not to assume, but to savor. What a gift.
In the song “Beautiful Boy (Darling Boy), John Lennon says, “Life is what happens to you while you’re busy making other plans.” Not for 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 and 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.