Learning love from Baby Grace

The Boston Globe

Beverly Beckham

She wasn't the prettiest child in the room, because they were all the prettiest, babies still, not one of them over 3, flawless skin, bright eyes, shy, sweet smiles. But my daughter and I were drawn to this particular baby because she reminded us of Lucy, my daughter's little girl, with her sweet round face and her light wispy hair and the thin pale line on her breastbone that told us she had had heart surgery, too.

"How old is she?" we asked her mother.

"Six months," the mother said, and we gushed and said something like, "So cute." And "Lucy is 5 now. Hard to believe."

"What's your baby's name?" my daughter asked.

The mother said Grace. And we echoed the word, which means blessing, and it hung in the air, a name so weighted with truth.

Then we sat down, my daughter and I on one side of the room, Grace and her mother on the other.

And the speakers began their program.

This happened a week ago at the Seaport Hotel in Boston, where we were attending the National Down Syndrome Congress. We had signed up for the "New Parent's Survival Guide" not because we are new parents, though my daughter is new enough, but because we wanted to meet the two speakers.

Kathryn Lynard Soper lives in Utah, has seven children, and contributed to and edited the book. "Gifts - Mothers Reflect on How Children with Down Syndrome Enrich Their Lives." Jennifer Graf Groneberg lives in Montana, has three children, and has just published "Road Map to Holland - How I Found My Way Through My Son's First Two Years With Down Syndrome." Both women have blogs. Both are prolific writers. And both have sons with Down syndrome.

When Soper's son Thomas was born, there wasn't a book for her to read that told her what she wanted to know. There were guides and charts and medical treatises and a few stories about choosing to have a child with Down sydrome, but not a single book in which mothers talked about their experiences, their feelings, their lives, and their children. Soper wrote about her life with Thomas in her blog, and hundreds of mothers wrote back. And, in time, hundreds of stories were shared.

Soper collected and organized them and sent them to Woodbine House, a publisher specializing in special needs, and the stories got published, beautiful essays interspersed with photographs of beautiful children. Though the stories address fear and worry and preconceptions and misconceptions, the common denominator, what holds them together, is love.

That's what no one tells you when you have a child who is not perfect. That love changes everything. That love propels you from the bed to the cradle in the middle of the night. That love is why you sing even when you're bone tired. That love is what fills your heart with pride and your eyes with tears, sometimes many times. That love is the reason all parents, even parents whose kids have challenges that seem burdensome and overwhelming to everyone else, say with certainty, "I wouldn't trade my child for any one else's."

Love is what the tests can't measure.

When Lucy was born just five years ago, "Gifts" and "Road Map to Holland" hadn't been published. Someone gave us "When Bad Things Happen to Good People." Someone meant well, but Lucy was never a bad thing.

Sometime in the middle of the 90-minute workshop, when Soper paused and asked for questions, Grace's mother raised her hand, stood up and thanked Soper for compiling her book. Then she went on to explain how this little collection of simple stories written by 63 ordinary women saved her baby Grace's life.

"We had a week to decide," she said. Her test had come back positive, the doctors were somber, the literature bleak. And every bit of life experience she and her husband had was limited to feeling sorry for and frightened by every disabled person they had seen but didn't know.

"Gifts" took them beyond the stereotypes and showed them that "disabled" is a loaded and omissive word with all the bad left in and all the good left out.

"Road Map to Holland" does the same thing.

Two books of love stories. Two books that are already changing the way people think.