A Noble Calling: The Rewards and Challenges of Raising a Child with Special Needs

Winner of the New England Press Association (NEPA) Award
Category: Human Interest
Published in Bay State Parent Magazine

On a warm summer night three years ago, Susan Noble was enjoying a special evening with some friends at a baby shower to celebrate the upcoming arrival of Susan and Kens’ first child. As each gift was opened and passed around, the women oohed and aahed, especially at the adorable little overalls and sports-studded outfits.

Ken and Susan knew their baby was a boy. They had narrowed their choices for a name. And, like any other pregnant couple, they eagerly awaited the arrival of their son, with all the preparations, dreams and expectations any couple would have.

What they didn’t expect, what they couldn’t have possibly prepared for, and what they never dreamed of, was that their son Benjamin would be born with severe Athetoid Cerebral Palsy. A medical condition due to an injury or trauma to the brain before, during, or shortly after birth, Cerebral Palsy affects a child’s ability to control the use of his or her muscles.

Ben, who turns three in July, is a sweet, sociable toddler with silky blond hair and a knack for endearing all who have the privilege of meeting him. On the sofa, he smiles in delight as his dad drapes him over his knees to gives him an upside-down view of his world through his toddler-sized glasses. “He loves this,” Ken remarks. “What kid wouldn’t?”

Ken and Susan then recall the day their life turned upside down.

Susan had experienced a normal pregnancy up until just a few days before Benjamin was born. It was then that she noticed that “his movement changed,” and she just knew “something was wrong.”

Something was wrong. Susan had a placental infection was slowly and insidiously depriving Ben of life-giving oxygen. By the time Ben was delivered, “the baby was in severe fetal distress,” she said.

Ken describes the moments following birth as total “confusion and frustration.”

“Things weren’t going right. The thing I was most aware of was that he didn’t cry. He just whimpered,” he says. “Another fifteen minutes more and he wouldn’t have survived.”

Benjamin had suffered from severe hypoxic trauma, a condition that would affect his tiny little body for the rest of his life. At six months, Ben was officially diagnosed with Athetoid Cerebral Palsy, a condition that has left him with quadriplegia and other internal complications. Today, Ben cannot walk, talk, or eat without the assistance of a feeding tube. He also is partially blind and has required extensive dental work.

“Ben is perfect on the inside,” Susan says. “He’s a perfect little boy who happens to be trapped in a body that just doesn’t work.”

Since he was born, Ben has undergone two major corrective surgeries, has been hospitalized a dozen times, and has a schedule of ongoing doctor’s appointments and weekly physical, occupational, speech and visual therapy appointments that would boggle the average “busy” parent’s mind.

“Today Ben has four visits scheduled,” Susan states matter-of-factly.

Ben looks up at his dad, then scans the room for his little sister. Joelle, who is 16 months old and bears a strong resemblance to her brother, toddles over to Ben and matter-of-factly puts a pacifier in his mouth. Ben grins, nearly losing the pacifier in the process. Ben adores Joelle.

“Some people were judgmental when we had Joelle,” recalls Susan. “They felt we had enough to deal with already. For us, Joelle provides an opportunity for Ben to have a normal sibling experience.”

Joelle isn’t the only sibling Ben will know and love. Ken and Susan are expecting their third child in October.

Raising a child with disabilities has dramatically affected every area of the Noble’s life, from the nonstop demands on their time, their finances, and their career choices, to more profound areas of faith, relationships, and a rethinking of what really matters in life.

“The biggest areas that have been impacted are our finances and our time,” says Susan.

Medical expenses are never-ending. Even with full health insurance coverage, the Nobles still face over $10,000 in out-of-pocket expenses per year for Ben’s medical needs.

“We typically max out one year’s insurance limits on certain things like medical equipment within a month.”

“The cost of equipment was shocking to us,” Ken adds. “We just had to get a new stroller. It was $4,000.”

The time demands of caring for Ben round-the-clock takes its toll, too. “We never realized how all-encompassing parenting Ben is,” says Susan.

When they aren’t caring for Ben, they are taking him to Boston for doctor’s appointments, receiving in-home therapy sessions, or on the phone sifting through the yards of red tape associated with insurance coverage, state-funded programs, and aid from private foundations.

Once a week, Ben attends the Michael Carter Lisnow Respite Center in Hopkinton, which serves more than 100 local families of children and young adults with disabilities. On that day, Susan devotes a large part of her time “one-on-one” with their daughter Joelle.

Their ideas about careers have changed, too. Prior to having Ben, Susan found fulfillment in a full-time career managing treatment programs for inmates. Today, she’s moved into a part-time clerical position at the same company in order to gain flexibility in her schedule.

“For me, my work provides money for medical expenses. A ‘career’ just doesn’t matter,” she states.

Ben has also impacted his dad’s career vision. Currently a software engineer, Ken also holds an BA in music. He hopes to one day combine his music training and software experience to help develop new assistive technology for the disabled; specifically, augmentative communication devices.

“Having Ben has helped me see how I can combine my life experiences and skills together for a greater purpose,” he says.

Ben has a way of putting a lot of things into perspective for the Nobles. Their unshakable faith in God, along with people who love them, love Ben, and have come alongside to help, have given them a perspective and strength that few people possess.

“The outside stuff doesn’t matter,” says Susan. “God made someone wonderful when He made Ben.”

“Material things don’t matter. Relationships do,” adds Ken.

In their own marriage relationship, the Nobles have discovered that each is unique in the way they have handled the ups and downs of the past three years.

“The challenge is that we handle things so differently,” says Ken. “But we still are committed to being there for each other.”

Friends, relatives and neighbors of the Nobles have also wanted to “be there” in times of need, but haven’t always known how.

Recently, they had their chance. In June, friends of the Nobles held a benefit dinner and silent auction to help pay for a desperately needed wheelchair accessible van for Ben. Such a van typically costs over $50,000, a staggering expense for the Nobles.

The event raised nearly $40,000 in personal and community donations. In addition, Home Depot donated materials and Assabet Valley Regional Technical High School students volunteered their labor to renovate the Noble’s current bathroom to be handicapped accessible. The success of the event was a stunning testimony to the compassion of many individuals.

“It’s overwhelming to think of the generosity of people and to think that they would embrace my little boy,” says Susan.

The Nobles are well aware that some people, especially those who have had limited exposure to the disabled, have a variety of prejudices and misconceptions about what it’s like to have a child with a disability.

“The greatest misconception is that it’s all sad. It isn’t,” stresses Susan. “Ben is a wonderful little boy that’s so totally fun. He lived, when he shouldn’t have. When I tell people about Ben, I don’t want them to say ‘I’m so sorry’. Ben’s life is not sad, and I don’t want people to assume that.”

Ken and Susan, like any parents, have dreams for Ben’s future. Their dreams are that he would learn ways to communicate with people, that he would have some level of independence, that he would have high self-esteem, and that he would feel loved by the people around him.

For families raising a child with special needs, Ken offers this advice:

“Let go of your old dreams. They are your dreams, not your child’s. Find the ‘other things’ to dream about. Embrace the challenge of giving your child a rewarding life. Discover the alternatives.”