Motherhood both dream and challenge

Raising child with disabilities brings joy, heartbreak

By Elaine Ezerins

Staff Writer

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The Facts

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RICHFORD — Madeline Wetherby, 56, knew she wanted to be a mother as a young girl, looking after and playing with her nieces and nephews beginning at four years old. Later, when her second child was diagnosed with cerebral palsy, she realized being a mother might be the hardest job she would ever do.

Looking back on her life, Wetherby said giving birth to three children was the defining moments in her life. “It was funny because I always dreamed as a little girl that I would have a daughter named Amy,” Wetherby said.

Therefore, no one in Wetherby’s family was surprised when, after finding out the gender of her first child, Wetherby named her daughter Amy.

With her second child, Jesse, nothing went as expected.

“He was ten months old before he was labeled with cerebral palsy,” Wetherby said. “We were devastated. We had no idea what to do.”

“It took me a while to learn all the ins and outs,” she said. “At first, I was very overwhelmed. My husband and I were both. We just didn’t know our future. And it did change our future. It changed our lives forever.”

Wetherby and her husband weren’t the only ones who needed to adjust to the unexpected.

Wetherby said Amy was kind of confused and would say, “There’s no Jesse” because he had to stay at the hospital in Burlington for the first couple weeks.

Eventually, they were able to bring him home, but there were still “constant trips to the doctors,” Wetherby said. “It was very difficult for her because all of a sudden, here’s this little brother and she’s not mommy’s only child anymore.”

“After talking to a social worker at the Burlington hospital, she suggested I spend special quality time with Amy,” she said. “So I would take her shopping and say this was our special time. When I did exercises with Jesse, that was his special time.”

“That lasted for her right up until the high school years,” she said.

Having a son with cerebral palsy led Wetherby to take a position at Richford Junior Senior High School as a paraeducator. Starting this fall, she will have worked with students with developmental needs for 21 years.

“My son was of course in special education and had all kinds of services,” Wetherby said. “I was able to understand that part as a parent, but I was also, as a paraeducator, able to understand the school’s point of view.”

“For a parent, you have to become very strong,” she said, laughing. “It took me a while, to advocate for a child who couldn’t talk and couldn’t walk. I was very timid at first and kind of let things go until a lady from the United Cerebral Palsy would come to meetings with me and she would help me out.”

“Finally one time we left a meeting and she said, ‘I’ve created a monster,’” Wetherby laughed, “because I had learned.”

Wetherby said as a parent, “it’s very hard. You want the best for your child and you feel like the school knows everything, but they don’t. If a person hasn’t lived it, they don’t know.”

“The school’s perspective is to try to do the best for the child,” she said. “But they also really need to listen to a parent. It doesn’t mean if a parent goes in and says, ‘I want this, this and this,’ its going to happen.”

Wetherby said working together and communication is key.

Working as a paraeducator also helped her see how beneficial Jesse’s presence was for other children in school.  “My son couldn’t talk,” she said, “but to this day children remember him for his smiles, his gentleness about him.”

Wetherby said hyper children would calm down around him because they knew he could be startled with loud noises. “I think they realized that, “Wow, my life is rough, but look at him,” she said, because Jesse was in a wheel chair. “I think he helped a lot of students.”

After Jesse was born, Wetherby said she was determined to have another healthy child. Issac, who was two years younger than Jesse, adjusted to his brother’s needs quickly, because Jesse was always a constant. “Jesse was already there so it wasn’t as difficult,” she said.

“I don’t know how I did it,” Wetherby said. “I can remember having both boys in my hands and feeding them bottles. It was kind of like having twins.”

When Issac grew older, he was very active, which Wetherby said “was fun to watch because we missed out on it with Jesse.“

When Jesse turned 26, Wetherby and her husband decided to move their son into a small care facility in Barre. “I was getting older,” she said. “It was hard to take care of him.”

Wetherby said it was probably a good thing the facility was in Barre because she would’ve been there every day when he first moved.

“They advised us to stay away for a couple weeks to let him adjust,” she said. “It was the most difficult thing I could do. I was glad I had a job so I could focus on something else.”

Wetherby said Jesse would still come home to visit, especially around the holidays. “He was still very much a part of our lives, just not every day.”

The last picture Wetherby has of her son alive was a Christmas family portrait, taken just before he passed on New Year’s Day in 2012.

 

“We knew it was coming,” she said. “He had been sick for several weeks before, but you can never prepare yourself to lose a child.”

Now that four years have passed, Wetherby can look back on his and her life with some perspective.

“Of course I love my son and miss him dearly,” she said. “But because of everything he had been through, including multiple surgeries, you just get to a point where you’ve watched him suffer so much… I honestly prayed to God to do what he thought was best.”

In the end, Wetherby said, “I don’t know if it was harder on him or us.”

Editor’s note: This story is part of an ongoing series looking at the lives of women in Franklin County. To suggest a profile, email Elaine Ezerins at Elaine@samessenger.com.