“Knowing that James had this from the very first time his cells divided in the womb — that gave me peace of mind,” she said.
And that was something that was in short supply back then. It was at a time when the family was living in a camper while Patrick was starting to build their off-the-grid post-and-beam house on the outskirts of Belfast. The baby had a hard time swallowing, which is not uncommon with children with microcephaly, and Andrea was spending hours each day trying to feed him.
“It was a very stressful daily existence,” she said.
These days, daily life looks and feels a lot less stressful and more sane, even with the addition of another child. Rafe, their second son, is a busy, active almost 1-year-old who does not have microcephaly. The family has moved into the new house and about a year and a half ago made the very difficult decision to have James undergo a surgery to insert a gastronomy tube, or G-tube, directly into his abdomen so he can be fed that way.
“The value of do-it-yourself was a huge personal barrier to getting the G-tube,” Andrea said. “Wanting to not just go the easy route.”
But once the surgery was done, it took minutes to feed James instead of hours. Suddenly, Andrea had time and energy to do other things with him, too, including taking him for long sled rides through the winter woods.
“It dawned on me that I had the opportunity to do a very normal thing,” she said. “We went on these long walks, and it was amazing. It was a total game changer. He loved the feeling and the sight of the bright snow and the trees.”
Courage to be happy
The Doles have worked to get James the help he needs, including seeing a physical therapist in New Jersey who is an expert in the field. Their team includes therapists, developmental educators, case managers, physical therapists and neurologists, and they have day and night nurses in the house to assist him. Having the outside support has been a positive turning point for the whole family, Patrick Dole said, adding that they are currently looking for a couple of new nurses to help. One nurse, Sylvia Grover, who was with James on a recent day, said that she has seen him improve over the weeks and months.
“He’s more engaging with what’s going on around him,” she said, adding that working with James has been a pleasure. “I just fell in love the minute I saw him. That smile. That giggle. He’s just a happy, happy boy, partly because nobody told him he couldn’t be. It takes a lot of courage on all sides, a lot of family support and a lot of community support.”
James goes to Waldo County General Hospital in Belfast for pediatric occupational and physical therapy. He also spends a lot of time at home in his therapeutic jumper, which his parents were able to buy with the help of their family and friends after he outgrew his Jolly Jumper about a year ago. Soon, he’ll be heading off to an inclusive preschool, where he will spend time with all kinds of other kids. And he’s continuing to beat expectations, his parents said.
Credit: Gabor Degre
“It’s a new era, and the literature is outdated. Doctors don’t necessarily know. I was really terrified. They give you all the horror stories, but the refrain that kept echoing was, ‘Trust your own instincts as a parent.’ You know best,” Andrea Dole said. “There’s the daily stresses of just trying to figure out how to give him the best opportunities he can have, and at the same time, loving him just the way he is.”
The Doles want to talk about their journey with James in part because when they first learned about his diagnosis, they had a hard time finding more hopeful narratives of life with microcephaly. They did find other families via Facebook support pages and by networking through local therapists, and it helped a lot.
“I would really like for new parents faced with a challenge and a challenging diagnosis to feel empowered,” Andrea Dole said.
Parenting James, they have found, means being engaged with every aspect of his life. In order for him to be active, they have to interact with him. There is no chance they could drop him at the playground and just zone out with technology while he’s playing, for example. But that kind of intentionality is familiar to them. At their house, they don’t spend a lot of time on computers or watching television but strive to be engaged in their lives, especially the parts that look like work. Like chopping wood or building a house or preserving this summer’s tomatoes for a winter feast. They want to do that even with an active almost-toddler and a 3-year-old with special needs and an unknowable future.
“The way we live, it’s just living,” Patrick said. “I don’t think it’s a way. It’s what people have done for most of the time that people have been people.”
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