The Register-Guard
MAY 10, 2015
For someone who originally didn’t think she even wanted children, Stephanie Dahl has experienced a motherhood somewhat unusual for both its quantity and quality.
“I hadn’t planned to be a domestic woman at all,” said Dahl, who in some circles uses her maiden name, Southerland. “I wanted to produce plays and movies and do video broadcasting.”
As life would have it, though, early on she fell in love with someone who wanted to have a large family.
“He was one of five kids, while I had only one sister,” Dahl said. “I don’t know why, but we developed this plan that we would have four kids — two in the beginning and another two later.”
The marriage didn’t last, but the family planning did. The oldest two, a boy followed by a girl, are Jonathan and Laura. The younger set is a girl followed by a boy, Melissa and James.
Jonathan, 24, is an emergency medical technician and paramedic who works at PeaceHealth and just won admission to nursing school. Laura, 21, is married and works at the Perugino coffeehouse in downtown Eugene.
Now 16, Melissa is a student in the Transitional Education Network, or TEN, at Sheldon High School, and James is a 12-year-old sixth-grader at Madison Middle School.
“Now sometimes when I realize that we did the two sets of kids on purpose, I wonder what I was thinking,” Dahl laughs. “But I did want to give them all enough space to grow up individually, and it just means I’m raising kids for a long time.”
Now in her mid-40s, she also believes that the spacing had another important plus, giving her the experience and wisdom needed to nurture her two youngest, both of whom have conditions that require extra effort on her part. Melissa, an exceptional artist and creator of graphic stories, is on the high-functioning end of the autism spectrum.
She also has misophonia, which is characterized by a reflexively intense, negative emotional reaction to certain sounds, such as chewing, sneezing, coughing or tapping.
James, also very bright, received special education early on in elementary school after being diagnosed with Asperger’s, another form of autism.
He developed a critical health issue just over three years ago, when he suddenly began having severe, debilitating seizures.
His life since then — and much of his mother’s energy — has been spent battling back toward normal.
Devastating changes
James’ first episodes came early in 2012 when he was 9½ years old, his mother recalled. They were characterized by confusion and delirium, including behaviors such as muttering repetitive phrases and walking into walls, but they ended quickly.
During the next few months, however, the seizures increased in intensity and regularity and began to take 30 minutes or more to resolve, leaving the boy dazed and exhausted.
By then, he could be standing normally one minute and writhing on the ground the next, unable to speak, his left arm and leg “dancing to a different beat,” his mother said.
Thanks to the teaching skills of a school nurse, James’ classmates at Awbrey Park Elementary School were well-versed in running for adult help when a seizure started.
Before long, he was taking five anti-seizure medications to try to block the seizures. His local neurologist, Steven Goins, advised Stephanie Dahl to take James to the University of California Los Angeles as soon as possible for an evaluation.
At that point she asked the doctor, “I need some perspective — how severe is this?” Dahl said in an interview nearly two years ago. “He said, ‘On a scale of 1 to 10, it’s an 8. It’s a tragic situation.’ I thought, ‘That’s very strong language.’ ”
The change in her youngest child had been swift and devastating, Dahl said in a blog she started at the end of 2012 to chronicle his condition.
Within a few months, he went from being a happy, normal child enjoying swimming, bicycling and school field trips to one plagued by nearly daily seizures, convulsions and headaches so severe that he couldn’t function.
After flying down to UCLA early in 2013 — his first time on an airplane — James met neurosurgeon Gary Mathern and underwent neurological testing.
The results diagnosed Rasmussen’s encephalitis, an inflammatory, auto-immune disease that causes frequent, violent seizures in young children that eventually can destroy the tissue on one side of the brain.
Scientists estimate that worldwide, there are probably between 200 and 500 cases of Rasmussen’s encephalitis at any given time.
Given the severity of James’ condition — the right hemisphere of the brain had shrunk and atrophied irrevocably from the seizure activity — the only fix was a hemispherectomy to remove the damaged right half of the brain.
This all was happening at a critical point, because James, by then nearly 11 years old, was hovering near the age when the brain begins to lose plasticity that allows it to create new neural pathways between the hemispheres so that an injury to one side of the brain can be compensated for by the other.
Generally, the right half of the brain controls movement on the left side of the body, and the left controls the right.
It’s inevitable with a hemispherectomy that there will be permanent weakness on the opposite side of the removed brain tissue and also possible loss of vision in the opposite-side eye.
Because James was left-handed, not only would he have permanent muscular and neurological deficits affecting his left side, he also would have to retrain himself to become right-handed.
And there was one more glitch. In most people, the left side of the brain controls speech and comprehension, which usually means a right-side hemispherectomy is less threatening to future ability to communicate.
But in left-handed people, there is a 30 percent chance that the language center in his brain is on the right instead of the left, raising the risk of permanent speech difficulties.
In James’ case, the decision was quickly made to do the surgery in July 2013, during summer vacation after his fifth-grade year, with the hope he would be able to rejoin his class in the fall.
Between the physical and emotional fallout from the surgery, that proved to be far too optimistic. James made one trip back to his classroom just before the winter break but was overwhelmed by the stress of the experience, eventually slumping forward and resting his forehead on the desk.
As his mother helped him leave the room, his classmates suddenly whispered in unison, “Bye, James.” One voice said, “Adios, amigo.”
The focus for the rest of that school year became “returning James as closely to his original self as possible,” his mother said.
It’s a process that has continued this school year, but James has made tremendous progress. In September he made the transition from elementary school to Madison Middle School, where he’s in sixth grade.
His original class is now in seventh, but they’re all in the same school together, so he’s been able to renew old friendships, which has helped his emotional recovery, his mother said.
Getting better
A few weeks ago, James aced a science test on conduction and convection.
“Since he used to be left-handed, and he’s had to transition to being right-handed, his handwriting is about back to preschool,” Stephanie Dahl said.
“So they accommodate him by doing tests verbally, and he uses an iPad a lot, which also helps. They did a video of this test, and it was great. He got an A-plus.”
James still spends time in the school’s learning center, where students with various disabilities get customized instruction, “but they’re pulling him out for typical science, and he’s ready to be doing the same thing for English and social studies,” Dahl said. “In September, he’ll be back at school for full days.”
James is “so much happier now,” she said. “He was so depressed for months after the surgery, because his life was so different and his abilities so limited. But he’s back to being jokey and telling silly stories and silly sayings — he’s always had a quirky sense of humor — and everybody’s back to enjoying him very much.”
James still wears a brace on his left leg, as well as one on his left wrist.
“He has a new wrist brace, and he’s going to get a new leg brace — it’s been ordered,” Dahl said. “The first time, he picked out plain black. This time, he chose one in really bright colors. I think that reflects the difference in his emotional health and his outlook about his life.”
James is doing adaptive swimming twice a week, and he also goes bowling. He’s been on a trip to Magic Mountain with his dad and ridden on the roller coaster.
He’s undergone a huge growth spurt and now is as tall as his mom.
Best of all, he’s “completely medication free, and he hasn’t even had a flicker of a seizure since the surgery,” Dahl said. “We made a trip to UCLA for a checkup with Dr. Mathern, and James walked into the room and said hello.
“The doctor said he is a poster child for recovery from Rasmussen’s. He said things couldn’t be better — he was really pleased.”
Sadly, Mathern recently suffered a stroke, and although he has recovered well, he won’t be doing surgeries like James’ any longer, she said.
James has some peripheral vision loss, and his forward vision on the left is not as good as it might be, and the fine motor skills on his left side remain somewhat diminished, Dahl said.
When he removes his leg brace, he can get around — including running up and down stairs — but he can’t control the left leg muscles completely and continues to receive therapy for that.
“The change in his speech may be the most fascinating thing of all,” his mother said. “The goal at first was for him simply to speak a sentence that made any sense. Now, we’re working on regaining proper syntax and grammar.”
James and Melissa both love to swing, and a favorite outing with their mom is to take a picnic snack along to the Awbrey Park school playground.
One sunny afternoon, Dahl spread out a red-and-white checkered tablecloth on a picnic table and pulled out a bag of cookies.
“Come to Papa!” James said, reaching in to take a few. There was also a container of fresh strawberries, and he perused one carefully before popping it into his mouth.
“Hmm — tiny little seeds in these strawberries,” he said.
Happy Mother’s Day
This will be one of the best Mother’s Day observances in years, Dahl admits, with James so much improved and her other children all doing equally well.
“It has taken a lot of support — there have been many angels to help me get through all this,” she said.
She gives a lot of credit to her partner, Marc Furney, and his close relationship with her children.
Her employer, the Eugene Education Foundation, where she has worked since 2007 and is assistant director, also gets its full share of gratitude for accommodating her needs in dealing with James’ condition.
“I guess I’ve always been kind of Mr. Rogers type of parent,” Dahl said. “My philosophy is to make sure my kids are appreciated as individuals, to respect their talents and interests and strengths and give them as much opportunity as I can to develop them.”
Meeting Melissa’s and James’ special needs has required a whole new set of skills — “I never had much experience before with special needs kids,” Dahl said — and it’s been both challenging and rewarding.
“There have been times when I feel life hasn’t been quite fair, given all that has happened,” she admits. “But I’m surrounded by people who are so supportive, I can’t wallow in self-pity very long.”
Those people include her own children.
On Mother’s Day, “We will give her sweet little cards, give her love, and we’ll sing silly songs for her,” Melissa said.
“My mom has always kept me warm and safe; when the divorce happened, she had to take us all, and she always does her best to be a good mom.
“She’s a kind sweetheart,” the teenager said.
Follow Randi on Twitter @BjornstadRandi . Email randi.bjornstad@registerguard.com .
