Step by step, challenges met

The Boston Herald

Beverly Beckham

No one means to scare parents and grandparents and aunts and uncles. What they mean to do is inform, enlighten. The more you know, the better off you are, right?

Knowledge is power, right?

Except that sometimes it isn't.

My mother-in-law had a saying: "Wee steps and slow." She applied this philosophy to a pile of clothing needing to be ironed as well as to getting though a life-altering trauma, such as having her legs amputated. Wee steps and slow. Taken one day at a time, little by little, life - even when it's tougher than you could have imagined - is manageable.

When a baby is born, on time with no discernable problems, it's all about wee steps and slow. No one gathers around the bassinet and says, "Hmm. She's going to have at least six ear infections by the time she's a year old. And she's going to fall and hurt herself a dozen times. And childhood asthma is a possibility."

No one says to a baby's parents, "Oh, your heart will break when she leaves for first grade. And middle school? That's when your real problems begin. And just brace yourself for the teen years now."

And there will be a war and your daughter will have to fight in it.

And there will be a car accident and your daughter will be hurt.

No one warned the parents of the people who died in the fire at The Station that this could happen. No one said to Teresa Knight when her children were babies, someday your husband is going to be accused of killing them.

You look at a newborn and all you see is a newborn. If you saw the future, you'd bolt. Babies are born small and cute for a reason. God is not dumb. But some of the smartest people are.

We have a new baby in our family: Lucy Rose, my daughter's daughter. She's not even 7 pounds yet. She's not even 4 weeks old.

But her future is the subject of all kinds of books and medical dissertations. Lucy HASDown syndrome. She IS NOTDown syndrome. She's just a baby who happens to have an extra chromosome. In most cases it's good to have an extra something in life. An extra tire in case one goes flat. An extra change of clothes in case you get rained on.

Already it's easy to see the extra good in her.

But we don't need to see her future. It's out there in the great unknown like everyone else's. It's not predictable. It's not a 13 percent chance of this and a 40 percent chance of that.

It's not even in the well-meaning, "Look at what so-and-so did. Look at him. Look at her. Look at what Down syndrome people can do."

Look at Lucy Rose. That's what we want, people to see HER not as part of a group, but as part of our family. Sure, Down syndrome kids have problems. But ALL people have problems.

My son stuttered. But his stutter didn't define him. Xena is dyslexic. But that's not all she is. Lois and Alicia have multiple sclerosis. But that doesn't mean they're the same. Arlene, Eddie, Suzanne - they're all fighting cancer. And all living different, separate lives.

The future cannot be categorized or charted. There are thousands of young people in harm's way right now fighting a war that wasn't imagined when they were babies in their mothers' arms. And there's Kai Leigh Harriet, a healthy 3-year-old until July 1 when she was hit in the back by a stray bullet. Now she's learning to adjust to life in a wheelchair.

Wee steps and slow. For Kai Leigh. For Lucy Rose. For all of us. One step at a time, you can make your way through anything. It's when you look up at the future that you lose your balance and can lose your way.