A parent’s ‘privilege’: Disabled Craig teen a source of hope, inspiration for family
“You can take somebody who’s got the hardest heart … and they just kind of melt.”
— Todd Hildebrandt, 45, on the effect his daughter, Katelynn, who is legally blind and deaf, has on other people
In Katelynn Hildebrandt’s room there are no posters of teenage heartthrobs, no pictures of friends, no cell phone, no computer or any other trademarks of a typical 16-year-old girl.
Instead, a group of dolls holds silent conference on a dresser near her bed. Mickey and Minnie Mouse dolls smile placidly from the top of a nearby bookcase, while plush lambs and rabbits fill a shelf above a row of books.
Katelynn did not choose the toys, the books or anything else in her bedroom, the typical bastion of teenage self-expression and freedom.
She can’t tell you what her favorite color is or the name of her best friend.
She cannot say what she dreams about, what she hopes for or what she fears.
Her body is like a locked box, and her window to the outside world is fragmented.
Sounds that reach her are probably muted and maybe incomprehensible.
Like the crescent suspended in a winter night’s sky, a part of Katelynn’s inner life will always be in shadow.
But for her parents, Kathy and Todd, Katelynn is also a source of faith and hope.
Her light is sometimes eclipsed by a fragile connection to life, but it still endures, against the odds, a quiet presence set against an uncertain future.
The reason Katelynn isn’t like most 16-year-olds is unknown. To this day, physicians can’t pinpoint what went wrong.
She was a tiny baby, weighing only 4 pounds, and she was deaf. But physicians soon suspected worse was in store for Kathy and Todd’s second child.
Gradually, the full scope of her disability came into focus. Katelynn, they would learn, was legally blind as well as deaf, and she couldn’t speak or walk.
Even the simple necessity of eating came with complications.
Katelynn couldn’t eat but rather had to be fed through a tube connected directly to her stomach.
Seizures came with little warning or reason, leaving her limp and exhausted.
Kathy had dreamed of having a daughter she could go shopping with, sing with and eventually plan a wedding for, she said.
She watched those tender dreams die before her eyes.
“I knew she would probably never get married, she would never go to prom, she would never have a family, those kind of things that you dream about when you have a kid,” said Kathy, 44.
She looked to the source of her faith but found no answer.
“I was angry with God,” she said. “I was like, ‘Lord, I tried to do what you asked of me.
“‘I don’t deserve this.’”
Weeks, months, then years passed.
Blighted first hopes gradually gave room to acceptance and even gratitude.
Instead of grieving for what Katelynn would never have, her parents grew to appreciate her capacity for affection, a bright gem left untarnished by the ravages of a mysterious ailment.
Katelynn coos contentedly when her father feeds her in his arms. Her laugh can ease a tense situation and her smile can elicit tenderness in unexpected ways.
“We’ve seen how God can use everybody because he uses her to touch people,” said Todd, 45. “You can take somebody who’s got the hardest heart … and they just kind of melt (when they’re around Katelynn).”
People are drawn to Katelynn and then “their hearts are softened,” Kathy said. “You can just see by the looks on their faces.”
“Look at that messy Jessica,” said Jennifer Shirley, pointing to a page in a thin book propped in front of Katelynn.
With the help of an implant that transmits sound vibrations through her skull, Katelynn is able to hear Shirley, one of two special education teachers at Craig Middle School, as she reads to her.
Yet deciphering what Kate-lynn can comprehend is more complex.
Shirley relies on subtle clues like eye gaze, or “purposefully looking at one specific thing,” to gauge what Katelynn, an eighth-grader, is thinking, she said.
Some of the signs are obvious.
Katelynn giggles when she bounces on a large exercise ball at school and she loves to hear her father’s voice, Shirley said.
Other times, the clues are faint and enigmatic.
In her math lessons, Katelynn responds to circles. No other shape seems to interest her.
Maybe circles are easier for her to understand, Shirley said.
Maybe she likes round things.
On one particular mid-February day, though, Katelynn seemed unresponsive.
Then her face suddenly broke into a grin.
“There’s that smile,” said Shirley, who was beaming, too.
This is the way it is with Katelynn. She takes you by surprise with an unexpected flash of character and affection.
What Katelynn thinks and feels — even how much of the outside world she understands — may never be known.
Yet, the magnetism of her smile is undeniable.
When Katelynn meets you eye-to-eye and smiles at you for the first time, “you’re done for,” Shirley said.
For most 16-year-olds, the plan usually goes like this: graduate from high school, go to college or get a job, then begin life’s journey on your own.
There are no such templates for Katelynn.
She can remain in public school until she’s 21, Todd said, but after that milestone, the map is blank.
He and Kathy have sketched out Katelynn’s future in broad strokes — they’ve decided she will never be sent to live in a facility but will remain with family — yet they know the next year, even the next day, is not guaranteed.
Kathy remembers nights when she was consumed by the fear Katelynn would not wake up the next morning.
Katelynn has had enough brushes with death to make that fear a chilling possibility.
So, they do the only thing they can: find peace where they can and appreciate moments they have with their daughter, who they now consider a blessing and proof of a greater design.
Katelynn has changed the Hildebrandts in ways they wouldn’t undo.
“It is a privilege to be her parent,” Kathy said.