One Mother's Hard-Earned Expertise Helps Others

Sue Lamendola is adamant — she doesn't want an article about her if it's going to make people pity her. She has beautiful children, a devoted husband, wonderful parents, in-laws and friends. But she and Chris, her husband, have also lost two of their five children, a true rarity in this age of life-saving medicine.

They lost their second born, a boy named Joshua, just 52 hours after he was born, from hypoplastic left heart syndrome, a heart defect. Their fifth child, Nicholas, died in 2005 from Alexander disease, a very rare degenerative illness. He was 9 years old.

These were, of course, terrible losses. But, as Sue said in a recent interview, “it’s been 7 years [since Nicholas's death]. Time doesn’t stop.”

According to Sue, it's been her other children who've helped keep her centered and in the world. The morning after Joshua died, for instance, Chris’s mother came over to the house to make sure Sue got out of bed. There was no need.

“I was sitting in the kitchen having a cup of coffee,” Sue recalled. “Christopher was my lifeline,” she said, referring to her oldest child, who was 2 at the time. “As horrific as it was, I had that little person I was still mom to.… It kept me going.”

Soon enough, she had three little people to be mom to. Katie was born in 1991 and Johnny in 1993. And then one more. Nicholas was born in 1995. He seemed perfectly healthy. But by nine months, Sue began to realize he wasn’t sitting up in his crib. At first, they were told he had gross motor delays. But Sue pushed. She knew it was more than that.

Eventually, Nicholas was diagnosed with Alexander disease, a leukodystrophy. There is no cure and they were told he would probably die before his third birthday. Sue’s life became a series of doctor’s appointments, therapist visits, hospital stays, and insurance puzzles.

The next several years were a blur. He went on a ventilator at 3 and after that he needed care 24 hours a day. Nicholas attended preschool for a little while, but he became increasingly fragile. Nurses would come to the house but invariably shifts weren’t always covered or someone had to cancel at the last minute. Sue was Nicholas’s caregiver of first, and last, resort.

She credits extended family and good friends for helping keep life pretty normal for the other children. (Both Sue and Chris are grew up in E.G.)

Sue smiled and laughed and cooked and cleaned throughout. She got to sports games when she could. She went out occassionally. And she advocated fiercely for Nicholas all the while.

After Nicholas died, Sue was able to turn her attention to her other three children, especially her oldest, Chris, who was going into his senior year of high school and doing the whole college search and application process. After Christopher left for college, however, there was a void.

“All of a sudden, I didn’t have anything to do,” she recalls. “All of a sudden, I had all this time. And there never was time [before].”

A phone call out of the blue provided a new direction.

A woman from hospice called Sue to see how she was doing. “She asked, ‘Have you thought about going back to work?’”

She suggested Sue would be good as a parent consultant. Sue went to work for Early Intervention, meeting with parents of children from birth to 3 who have some sort of developmental issue.

“I knew how to navigate all the systems, the durable medical equipment, health insurance,” and, most importantly, Sue knew the difficulty of being a parent of a child who’s been diagnosed with a disability.

“Everyone’s biggest issue is huge to them,” Sue said. Maybe it’s speech delay, or slowness to walk, or hearing problems. Or maybe it’s something life threatening. Sue doesn’t differentiate — it's huge to the parents of that particular child.

"I show them the ropes," she said.

Needless to say, the work can be draining. Two of her client families have lost children. It can be hard because, as Sue said, “sometimes I see the writing on the wall before they do.”

As for her other children, they are all grown now — Christopher is studying law in Boston, Katie just finished her junior year in Miami and Johnny his freshman year in Connecticut.

“It definitely changed their lives,” says Sue. “Nick’s gift to them was making them into phenomenal human beings. They never saw the disability … he was just their brother.”

“They get it … they’re very empathetic, they don’t sweat the small stuff.”

And what is Sue Lamendola doing this Mother's Day?

"I’m going to visit my mother and mother-in-law," she says. "My boys are home — I haven't had them here for a while. If the sun is shining and at the end of the day I can have a glass of wine, I’ll be happy. I appreciate the little things."