Sharing the joy and leaving a legacy for Katie Seigfred

​Everything about Stacy Seigfred looks like you’re seeing it through a soft-focus lens.
 
Her sandy hair waves around her face, the way she moves is easy, and despite whatever story she’s telling you, her full lips still move into a smile. She’s the brightest part of her living room – which is spare and unadorned. Wood floors, a Formica table that has folding sides. Two chairs to sit and talk or eat breakfast. A small couch and a television mounted on the wall, paused in the middle of a Lego movie.
 
Two photos hang on the wall behind her, a lifetime between them: One of her daughter Anna, 7, who shyly brings rubber bands and popsicle sticks over to us as we visit, trying to make a propeller.
 
The other is her daughter Katelyn, who was 13 when she died in February. In the photo, Katie stares right at the camera, her eyes engaged with whoever shot the picture. Her hair is pulled back from her face, and she leans against the headrest of her wheelchair, the smallest smile on her lips. She sees you, and when you look at the photo, you see her.
 
This is a story about Katie.
 
Stacy grew up in Tea, and then she met her husband Keith and they moved to Oregon. Katie was born in 2003 and was a fussy baby, “like off the charts,” Stacy says. She mostly stayed in the house to contain it, but a friend convinced her to go to a play date that was led by a registered nurse. At that, the nurse commented that maybe Kate’s shrieks were from acid reflux.
 
“It was like a light going off,” Stacy said. She went to a doctor who didn’t diagnose reflux but did treat her for an ear infection. It didn’t clear up the crying. A few weeks later, Stacy was lining up her six-month well-baby check.
 
“I just thought we have a fussy, colicky baby,” Stacy said. “I’m horribly sleep-deprived, and one day she started crying at 3 a.m., and she was still crying at 11, and I grabbed the phone book and I picked a pediatrician at random, and I got one of the best ones I’ve ever met.”
 
She got in that day.
 
They talked about acid reflux, checked for all the usual suspects when a baby won’t stop crying. But it was an offhand comment that changed Stacy’s life and began to explain Katie’s.
 
“The pediatrician said, ‘By the way, why isn’t she holding her head up,’” Stacy says.
 
Stacy knew that Katie wasn’t pushing up, but she thought she was just a little behind. The comment set off a flurry of tests, and they learned that Katie was missing her corpus callosum, a network of fibers that join the two hemispheres of the brain.
 
“Without the callosum, some people are out and about walking and talking and don’t know they don’t have the corpus callosum,” Stacy said. “Some people are on the opposite end of the spectrum, and Katie was on the opposite end.”
 
Later a diagnosis of spastic quadriplegic cerebral palsy was added.
 
Each bit of information about Katie led to another round of appointments and therapies. It got to where Katie would scream as soon as she saw a hospital, and yell her way through the waiting room and the appointment.
 
“You know what it’s like to do something with your kids they don’t want or don’t understand,” Stacy said. “It was like that, only it was all the time. And 95 percent of the time they didn’t need to do anything, maybe listen to her heart, but she would voice her way through the whole thing. It was never fast.”
 
They went to physical and occupational and speech therapy, to chiropractors and physicians and everything in between. And through it all, Stacy did what any mom does – she tried to communicate. She held Katie’s hands and made sign language gestures. She talked to her and sang to her, held her and whispered to her.
 
When Katie was about two and a half, she responded.
 
“Her first word was two words,” Stacy said. “It was ‘all done,’ and she meant it. She was saying, ‘I don’t want to do this.’”
 
Stacy stops talking for a minute, and her soft eyes fill. You can see the memory of Katie reaching out to her -- showing her she heard and understood, could comprehend and communicate -- move across her face. Anna had been standing quietly, taping wheels on her Popsicle sticks. She moved over and wrapped her arms around her mom, and you watch and wonder. How many times have they encircled each other in the past month, not knowing which one of them needed it more? Sometimes your kids need you, and sometimes you need them.
 
Katie learned a few more words. She eventually said mom, and no, and oh no, and yeah. Beyond that, she mostly communicated with her eyes – Stacy would hold up two choices and let Katie look at what she wanted. But it was sometimes frustrating to have to help people understand her daughter.
 
“They understood so little,” she said. “Trying to put her on a typical developmental scale just flat didn’t work. There were things that a newborn could do that she couldn’t do. The list of things she couldn’t do was a long list.”
 
She pauses.
 
“But she was clearly very bright. She understood everything going on around her, and she just processed things in her own way.”
 
She never really warmed to the doctor appointments, even growing upset when Elmo would go to the doctor on “Sesame Street,” her favorite show.
 
“I watched ‘Sesame Street’ for over 10 years,” Stacy says with a laugh. Katie loved it.
 
As Katie grew, she discovered a game she could play with her family.  Keith would come home from his job as an auto mechanic and sit at the table holding Katie, a water bottle near them on the table. Katie would shoot her arm out and knock it over.
 
Keith laughed, and they cleaned up the mess and put the bottle back.
 
Katie knocked it again.
 
And again.
 
“She liked a lot of games that didn’t seem to result in something she would want if she actually won,” Stacy says. That included knocking things off tables, rolling under furniture. And a favorite -- pulling the curtains off the rod from her bed. Stacy embraced whatever Katie embraced.
 
“I buy this one Legos, and I’ll buy this one curtains,” she says.
 
When Katie was 6, Anna was born.
 
“It was very scary,” Stacy says, noting it’s the same sort of overwhelming feeling for any family that’s growing. They didn’t worry their second daughter would have the same diagnoses, neither of which are hereditary. And she was able to enjoy every milestone that Anna met that Katie maybe never would. It wasn’t comparing daughters that saddened her – it was seeing other kids Katie’s age. Recently, Stacy was able to hire a teenaged babysitter for Anna. The sitter was six months older than Katie was when she died.
 
“Here she is ready to start high school and ready to start driving and old enough to babysit, and that is bittersweet,” Stacy says. “The gulf between where she was, that’s hard.”
 
Katie attended JFK Elementary School and then Patrick Henry. They navigated the school district and the doctor appointments, a surgery to fuse her spine in the Twin Cities. And Katie was healthy – she didn’t have the same respiratory issues that many people who aren’t mobile have.
 
“Then it just kind of all hit at once,” Stacy says.
 
She seemed tired, and she didn’t enjoy the things she normally did. She lost some interest in eating, and she struggled with spasticity.
 
Then the seizures started. At first they were small ones.
 
Keith had moved back to Oregon, and Stacy and Anna were planning a holiday visit to see him. Stacy’s parents were going to take care of Katie. Two days before they were supposed to fly out, Katie had a grand mal seizure. Stacy struggled with going on the trip, ultimately deciding to take Anna.
 
While she was gone, it kept happening.
 
Two days after the first grand mal seizure, Katie had another one. And then she had two more the next day. Stacy’s parents kept some of it back, so she wouldn’t worry on her trip.
 
“Then two days before we were supposed to come home, they said she seems really distressed, and her nose was bleeding and she just looked at them and she made a distressed sound,” Stacy says. She told them to take Katie to the emergency room.
 
Both of Katie’s lungs were full, and her body temperature was 85 degrees.
 
“I’m stuck 1,700 miles away, and they have to call me for everything,” Stacy says. “Then they wanted to intubate her, and that’s when I really lost it.”
 
Because of the holiday weekend, she couldn’t get back immediately. But Katie held on. “She surprised them because they didn’t think she was going to make the day, but she liked surprising doctors, so that’s not really shocking,” Stacy says.
 
She made the next day, and she made the next day. And she got better. They were getting ready to send her home when she spiked a fever.
 
She came home in the middle of December.
 
Katie did well for about a week, and then began to fade. Stacy was in touch with palliative care.
 
They told her to expect the pneumonia to come back and to try to plan for the best life for Katie. They made it through the holidays. But then she was readmitted and the family had a series of difficult discussions.
 
“If we’re not going to do anything for her here, then I want to take her home,” Stacy said. So she did, and the pediatric palliative care doctor made house calls. They worried Katie wouldn’t make it the 10-minute drive home.
 
In the morning, the doctor came and said Katie sounded better. Stacy felt like the truck that had been parked on her chest for the past few months had lifted a bit. “Then she sounded worse again, and the truck is parked on me again.”
 
She began to struggle to breathe, and Stacy couldn’t get her attention. A few days went past, and people came to visit, including a teacher and aide from school. The teacher’s aide counted to Katie, something she loved, and when she was done, Katie smiled. “We weren’t sure if she was still in there at that point, and it kind of energized the whole family,” Stacy says.
 
But she began to decline again.
 
They signed up for hospice.
 
“I’m doing the fluttery panic thing trying to figure out how I’m supposed to help her, what I’m supposed to do,” Stacy says.
 
For a moment, everything in this dining room goes quiet. Anna is taking a bath. Their cat is swirling around the table legs. Small bunches of tissues dot the Formica table, a plastic bottle of pop teeters on the edge. Stacy’s soft face is framed by the photos of her daughters.
 
She begins to speak again, and her voice brings you back to Feb. 5.
 
“The doctor came over and listened and said she didn’t sound good. We talked for 15 minutes, and then went back to her room to check on her, and she was sinking. Anna and her grandparents came home at that moment. Katie’s lips were white and she had this occasional gasp and her eyes were open but they weren’t focused,” Stacy says.
 
The doctor looked at Katie.
 
“He says, ‘Katie, are you dying?’” Stacy says.
 
She takes a breath.
 
“She was gone within a few minutes. I was holding her hand.”
 
In a few hours, under a bright light in a spare room, we had gone through the timeline of her daughter’s life. But pins dropped over the years don’t define someone, and they don’t define Katie – or Stacy or Anna or Keith. That’s bigger, that’s impossible to describe.
 
It’s a moment that’s every moment, the whole of Katie, of this family, pushing against everything you think and the boundaries of what you can endure.
 
Contained in this room. In her wheelchair. In her movements across the floor, in a dinner plate shattering as it hits a wood floor at Katie’s whim.
 
“She made my life better. People on the outside, they see the struggles, right? They see a little bit of the struggles, and then they imagine. But easier isn’t always better,” Stacy says. “She was a sweet, awesome, opinionated, complete person.”
 
Editor’s note: The Seigfred family donated Katie’s wheelchair to 605 Running Co. Their hope is that Katie’s legacy can be making life easier for another family who may need it. 

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Jacqueline Palfy is a longtime runner, reader and writer, marathoner, mom and board member of the nonprofit Sioux Falls Area Running Club. Her contributions to the 605 Running Co. blog will appear each Tuesday. You can follow her on Twitter @runnerJPK or reach her at [email protected]. Story ideas are encouraged.
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