Mystery of Hawley preschooler’s illness remains
About a month ago, Leah Greuel went into her 4-year-old son’s bedroom to check on him and noticed he was awake, which was unusual for 10:30 at night.
“Tommy, you’re awake, is something the matter?” she asked him.
Starting to cry, he put his palms over his eyes, tears running down his face.
“Mom, will you pray with me?”
“Sure, what are we going to pray about?”
“Will you pray that the doctors at Mayo will fix my legs so they work when I want them to?”
Christmas wishes don’t get any more basic.
“That’s when the reality of his world is so obvious,” Leah says, helping Tommy and daughter Kaylee make peanut butter blossoms for Kaylee’s Christmas program the next day.
In a few weeks, Tommy’s due for his annual visit to Mayo Clinic, where he’ll find out if he’s gotten strong enough to get fitted for bracing, which would allow him to start walking.
Tommy first captured people’s hearts in April 2012, when The Forum of Fargo-Moorhead published stories about his puzzling medical symptoms and the legal battle his parents fought to get him back.
They had been mistakenly accused of child abuse, their children put into foster care after hospital staff suspected shaken baby syndrome.
It wasn’t shaken baby syndrome.
Even with a top-notch medical team working on his case, the Hawley family still doesn’t know what it is, aside from a condition called benign macrocephaly – essentially, an abnormally large head.
But that doesn’t fully account for his vision and muscular problems.
“This little kid is being seen by the best in the world, and he is still undiagnosed. It’s unbelievable,” says Leah, 38.
Tommy’s head stopped growing (it’s remained at the size of an 8-year-old’s for the past 18 months), and the hope is that his body will eventually catch up.
His muscle strength is improving, but his vision is worsening. He’s nearly blind in his right eye, and every year he needs a stronger prescription.
But, “Life isn’t as scary as it was a few years ago,” Leah says. “Our goal was to stay out of the emergency room.”
This New Year’s, the Greuels plan to celebrate a full year without an emergency room visit.
As they hold out hope for a breakthrough, the family and their extended small-town family is doing everything they can for their blond boy wonder.
“We’re working with it, and he’s doing really well, but we don’t know what it is,” Leah says. She pauses, then adds: “And he’s thriving. You don’t argue with thriving.”
When Tommy started swimming in the family pool built with the assistance of many, it was in a full life jacket with someone holding him.
Now he can go from one end to the other with arm floaties and supervision.
“He’s by no means out of the woods, but he is getting much, much better, and the pool therapy has helped tremendously,” says Kalvin, Tommy’s dad.
Besides pool time, Tommy’s kept busy with physical and occupational therapy, activity books and visitors from the community, which sure didn’t forget about the Greuels after rallying around them in their direst time of need a few years ago.
One family gives Kaylee a ride to Park Christian School in Moorhead so Leah can stay home with Tommy because frequent travel’s too risky for him. Another gives her a ride home.
One family is repaid with fresh-baked muffins (“Muffin Monday”), the other with home-cooked meals on Fridays.
Even strangers show up on the Greuel doorstep asking what they need.
“Not ‘This is what I have.’ (It’s) ‘What do you need?’ And they’re willing to go out and fulfill that need,” Leah says.
The staff at the nearest Menards know Kalvin and Leah by their first names and help them come up with ways to make adaptations to their hobby-farm home to make it easier and safer for Tommy to get around.
That includes the narrow, winding staircase that leads to Kaylee’s “princess room,” which she’s proud to show off.
Kaylee, who graciously greets out-of-town visitors in a manner that suggests she’s a pro at hosting parties, has become somewhat of a 6-year-old kindergarten caregiver.
She looks out for her brother’s needs, but she’s not afraid to tell him like it is when she needs to.
Leah explains: “Kaylee’s a realist. He said, ‘I want to go to the potty myself,’ and she said, ‘Tommy, you can’t.’ He said, ‘How come I can’t?’ She said, ‘Because you’ll fall off the potty and break your brain.’ ”
The whole family laughs.
That’s been a big change for the family: Tommy’s fully potty trained, he just need help sitting up. Though, sitting at the kitchen counter’s no problem, says 47-year-old Kalvin before leaving for work at American Crystal Sugar.
“At his worst, he was sitting in his chair, and he couldn’t hold his head up for more than two minutes. Now he can sit for hours,” he says.
With Tommy’s age, growth and improved muscular strength has come an increased awareness of his physical limitations.
“He’s starting to be aware of his disability, and that’s both good and bad,” Leah says.
Regardless, his energy is infectious. Mom says he can be “a little booger” because, after all, he is a 4-year-old boy, but he’s obviously got a big heart.
“Personally, I think because of his physical limitations and disabilities, he has focused, just naturally, on people skills because he isn’t running around and finding rocks and riding a bike – all those things that little boys his age do – yet he’s so sharp mentally that he puts his energy into something, so he asks questions and he’s caring and he’s smart,” Leah says.
Tommy knows, regardless of whether he’ll ever walk, that he’s well-loved.