At 4-years-old, Hayden Kowalski seems to know everything there is to know about Star Wars.
As he thumbs through the pages of a book dedicated to the George Lucas classic, he points, looks up at his mother through blue eyes and tells her, matter-of-factly, that Darth Bane is a Sith Lord.
Then, just as quickly as this piece of trivia falls from his lips, he goes back to studying the pictures and text in front of him, oblivious to the world.
He doesn’t seem to notice when his mother gently takes his hand, wipes the tip of his finger with an alcohol pad and pricks him, drawing the tinniest drop of crimson blood that she then squeezes onto a paper-thin strip.
Seconds later, the monitor beeps and she scrambles in her purse for something. Moments later her hands emerge, one holding a crushed Quaker Oats chewy granola bar.
Momentarily distracted from his reading, Hayden balks at this snack— he doesn’t want a squished one— but eats it after Kellie opens the foil package and breaks apart the bar, piece by piece.
It’s hard to say if Hayden understands why his mother is feeding him a granola bar. He’s not hungry and doesn’t want the snack. But his mood is changing by the minute, and the check of his sugar levels shows they’re dropping and he needs something to eat— now.
Kellie knows the squished granola bar she had in her handbag is all that’s standing between her son and death. One day he will, too.
Juvenile diabetes affects about 3 million Americans. The cause of the disease is somewhat unknown, but the most widely held opinion is a virus, or another trigger, leads the body to attack the pancreas, killing off insulin-producing cells.
“It’s not like a light switch. It’s not like everything went wrong at once,” Dr. Sean McEnaney, a pediatrician with St. John's Health , said, explaining that long after the virus is gone, the damage is still being done as the insulin-producing cells continue to die until there are no more.
Other possibilities include hereditary factors, although several families, like Kellie’s, have never had a person afflicted with the condition.
“At most, only 15 percent of people with type 1 diabetes have an affected first-degree relative— a sibling, parent, or offspring,” said William Winter, M.D., a professor at the University of Florida College of Medicine in Gainesville. “Research suggests that genes account for less than half the risk of developing type 1 diabetes. These findings suggest that there are other factors besides genes that influence the development of diabetes.”
No matter the cause, there is one constant in all cases of diagnosis.
“It happens, and when it happens it’s life changing,” McEnaney said.
The Kowalski family is a unit of four— Chris and Kellie have been married for nearly 16 years (they’ll celebrate their anniversary in March).
Hayden shares a room in their quiet house, located off Highway Y in St. Robert, with his sister, Emily Grace, who is seven.
Life was about as normal as could be for the family when Kellie learned she was pregnant with Hayden.
The pregnancy itself was uneventful. She didn’t have gestational diabetes, the birth went as smoothly as births go, and Hayden, she said, “just seemed to be a very happy, healthy baby.”
It continued like that for awhile, until her golden-haired son was about a year old.
Hayden would shake, sometimes thrashing in bed. It was chalked up to temper tantrums. Kellie give him some Cheerios, because that’s what her mother did for her. “I noticed he would calm down and fall asleep,” she said.
He was obstinate. It was chalked up to being a child.
He’d guzzle water— “He’d knock aside his sippy cup and take my 20 ounce bottle and guzzle it,” Kellie recalled. It was chalked up to growing up.
Then the bed wetting started. And not just a little puddle on the mattress, either. He’d fill his diaper completely and soak right through the sheets.
Finally, thinking this behavior might be more than just a stubborn child trying to test his boundaries, Kellie called the doctor.
“Nobody wants to believe there’s anything horribly wrong with their child,” she said, trying to explain the explanations. “It all seems so clear when you start looking back.”
It’s a common thought among those who have a child diagnosed with juvenile diabetes. Everything is clearer in retrospect.
Because the disease is “not a process that is just on and off,” as Dr. McEnaney said, it can take months, even years for symptoms to fully manifest.
And many parents, like Kellie, mistake some of those symptoms for other things. It’s not because they don’t care. It’s simply because they didn’t know, McEnaney explains.
The shaking and thrashing Hayden was exhibiting at bedtime was a hypoglycemic reaction— a natural body response when blood sugar levels drop too low. His body was trying to bring those levels back up, by inducing a seizure-like state. That’s why the Cheerios worked— Kellie was unknowingly giving her son exactly what he needed.
The diaper filling, on the other hand, was a hyperglycemic reaction— another action the body takes when blood sugar is too high. It tries to flush the system of the extra sugar floating around.
Insulin activates the body’s cells, which need glucose to live, to absorb the sugar. In type 1 diabetics, there is not enough insulin or no insulin at all to help the cells do their job, causing the level of sugar in their blood to go high.
Left untreated, low or high blood sugar levels can lead to death. For the diabetic, this is something they must contend with everyday. It impacts literally every aspect of their life— from what food they eat to how long— and hard— they play.
“Everything in the life of the child changes dimensions,” Marie Davis, Metro St. Louis/Greater Missouri Chapter Juvenile Diabetes Research Foundation executive director, said. “It’s instant. You will die if you don’t do the following...”
Hayden was outside at preschool, catching lizards, when Kellie went to pick him up for his doctor’s appointment. She’d called just earlier that day, and to her surprise, was told to bring him in for an opening at 3 p.m.
In the sun, surrounded by dozens of other children, he looked like any two-year-old. She didn’t know then that hours later her son would be fighting for his life.
At the doctor’s office there was a urine sample and as Hayden filled the bag, a flash of concern registered on the nurse’s face.
It wasn’t long after that the nurse walked into the doctor’s office, where Kellie was talking about Hayden’s medical history and current behavior, still hoping everything was OK, and handed the doctor a single piece of paper.
A glance at the mystery writing and then instructions. Go home and pack your bags, he told her. We’ll tell you how to get to Columbia.
Kellie’s sister, Kristen Jenner, drove her to Phelps County Regional Medical Center. Hayden was going there first.
The doors to the emergency room opened with a whoosh, and as the two walked across the floor to the desk, Kellie heard six words that stopped her in her tracks.
“As we were walking across the ER, someone yells, ‘The helicopter is on its way,’” she said, softly. She knew then, as only a mother knows, that those words were about her son. Her Hayden.
Kristen recalls that day just as well as Kellie. As though it had just happened. And when those words came ringing across the emergency room, it was a sobering moment.
“As a mother, I couldn’t imagine,” Kristen said. As a sister, she felt helpless.
Hayden’s blood sugar level was passing 1,000. A normal reading is in the low to mid-100s. At 600, most people go comatose.
Somehow, though, Hayden was still holding on. And as the nurses poked at his dehydrated veins, trying to get in, Kellie could do nothing but stand back and watch this unexpected chapter of her life unfold in front of her.
The nurses swarmed around her child, wrapped in a sheet, crying in pain, and finally, something broke. At the point where she couldn’t watch it anymore, the helicopter nurse arrived.
“I told the helicopter nurse, ‘You get one try. I’m not watching this anymore,’” she said.
That was all it took. On her first stick, the needle pierced his soft skin, entering a vein on his ankle.
Shortly after, Kellie was told she could go with Hayden out to the helicopter to say goodbye, but she couldn’t fly with him.
“I really, honestly thought at that point he was going to die,” she said.
Not all diagnoses are as dramatic as Hayden’s, but they certainly can be as traumatic.
Jennifer Paulson knows first-hand what it’s like to get the news. Her daughter, Katie, 8, was diagnosed last February with juvenile diabetes, setting off a roller coaster that hasn’t finished running its course.
“It has been the most traumatic experience,” Jennifer said. “When he (the doctor) told us, I felt he had handed a death sentence.”
In some ways, he had.
Everything about their lives has changed. From the time they get up in the morning, to the time they eat, to the shots of insulin that dictate every other aspect of the day.
“I feel so guilty every time I give her a shot because I feel like I’m putting something in her we have to fight,” Jennifer explained. “She’s like, ‘Momma, I don’t want to eat it.’ But I’m like, ‘Baby, you have to.’ If she’s hungry, I want her to eat. And if she’s not hungry, I don’t want her to eat.”
Sadly, having a choice wasn’t an option for Katie for many months.
Katie, who was on a two-shot a day plan — something Jennifer calls 40-year-old technology— now has n insulin pump, thanks to persistence.
The insulin pump delivers a constant dose of insulin throughout the day— mimicking what healthy bodies do naturally and eliminating the need for constant shots.
Hayden also has a pump— something Kelly said has given him back his childhood.
Although doctors don’t know why, the younger the person is when they’re diagnosed with juvenile diabetes, the harder it is to control.
Kellie learned this in the first few months after Hayden’s diagnosis.
After taking the required classes to learn how to take care of him, she began giving him his insulin regimen— four shots a day.
But because his levels were so sporadic, what started as four shots really turned out to be eight.
“Then he started to associate eating with pain,” she said.
He learned quickly, as children tend to do, that if he wouldn’t eat, he’d get a sucker. For Hayden, it was like an award. For Kellie, it was the only way she could keep her son’s blood sugar levels up.
“I was literally hurting him, it seemed like, every hour of his life,” she said. “He started running from me. He started hiding from me. And even though you know you’re saving their life pragmatically, emotionally it’s beyond painful.”
She wanted to get Hayden started on the insulin pump, but at 2 1/2 years old that wasn’t common practice.
But, as in Jennifer’s case, persistence prevailed and nine days after the insurance company approved the pump, Hayden got his.
“It helped him have a childhood,” Kellie said. “He didn’t see me as someone who was hurting him all the time.”
Though the pump has been a life-changing therapy for Hayden, there’s still so much to consider.
Kellie’s actually more vigilant about his dosing now than she was before, because the consistency means they must make sure its right.
And while Hayden also has a Continuous Glucose Monitor (CGM) — a device that constantly measures the level of sugar in his blood, he’s still tested 10 to 14 times a day, because the CGM can be off several hundred points.
Then there’s the chance the pump or the monitor may malfunction. That happened not to long ago and Kellie remembers trying to explain to the Wal-Mart employee why she had to leave her basket of groceries as she rushed over to his preschool.
Still, she’s grateful for the technology.
“Without the technology we have, we’d be a lot worse,” she said. “I’m happy everyday we have those (the pump and CGM).
Though Hayden will never be able to fly a plane, join the military or drive a truck, his diabetes should have very little effect on his quality of life.
“These children can still lead normal lives,” Davis said.
In fact, it’s strived for. While diabetics can suffer the long-term effects of their disease including eye and kidney problems, living full, healthy lives isn’t the miracle it used to be.
“A lot of people think having diabetes means a shortened duration of life and it doesn’t mean that,” McEnaney said. “We strive for a normal life expectancy. The technology is phenomenal now, and it’s getting better all the time.”
That’s not to say there isn’t risk involved with the disease. Death is always lurking around the corner and a child who enters his or her teenage years and decides to ignore their medical condition can and will pay for it with later health problems and potentially shorter lives.
There is no cure for diabetes, although there are several ways people can manage it.
And a cure, Davis said, is something different to everyone.
“A cure for a man who has diabetes means his son won’t get it,” she said. “A cure for someone else means we can give them a cocktail of drugs so they don’t lose their insulin production for many years. For someone else the key is going to be the artificial pancreas.”
Kellie is holding out for the artificial pancreas— a device that uses current insulin pump and CGM technology in a single system that is consistently accurate.
That’s where the hold up is now. Because the CGM isn’t always accurate, fine-tuning the technology is the next step in the creation of this “cure”.
“We’re almost there,” Kellie said. “We just need to get the CGM better.”
Until then, or until another “cure” comes about, the daily work of managing Hayden’s diabetes will continue.
He’ll start kindergarten soon, and instead of sending him to East Elementary where the class sizes are a bit larger, Kellie has decided to send him to Pick Elementary.
The nurse, she said, has experience with diabetic children and since there’s only two kindergarten classes, he’s less likely to get lost in the shuffle.
She hopes the transition won’t be hard, but somehow, she knows it will be.
“He will never be able to be alone at any minute,” she explains. “She (the teacher) will have to take over my job... The ugly fact is he could go low and die out on the playground.”
Rita Long knows what that pain is like. She herself has juvenile diabetes— she was diagnosed during a time when glass syringes were still the norm— and her daughter, Stacie Fohn, also has the disease.
“They have to grow up so fast,” Rita said. “I don’t care how my heart broke, I let her do it. When she went to college, I thought I would die. But I knew she could take care of herself.”
It’s the same thing Kellie and Jennifer are hoping for, too. That when the time comes to turn the management of the disease they have been so vigilant about watching over to their children, their children will do as good of a job as they did.
Surprisingly, sometimes the most difficult part about the disease isn’t its management. It’s the misconceptions that come from those who don’t have experience with it. And then there’s the guilt.
“There’s a lot of misperceptions,” Kellie said, recalling the many times when someone has said to her, “Oh, honey, he’ll grow out of it.”
Before increases in technology, though, it’s possible the judgement from others was worse.
Kellie doesn’t have to worry about people staring at her in the store if Hayden needed an insulin shot because he has the pump.
That technology wasn’t always around and Rita faced judgement on a daily basis.
“I was ridiculed,” Rita said. “I heard, ‘I would never do that to my child.’”
Her answer— yes, you would give them shot after shot after shot, no matter how much it pained you or them, because if you don’t, they will die.
“If I’m around parents who don’t go through what we do, I can’t relate,” Kellie said. “I can’t look at
Hayden’s baby pictures because I know that at some point something went horribly wrong. He suffered and I did nothing about it. But I would have if I would have known. That’s how I feel. The guilt is endless.”
What Kellie speaks of is not uncommon in parents who have children with life-threatening disabilities. It’s called Chronic Sorrow Syndrome, and basically, once a parent almost gets past the guilt, something traumatic happens — an illness, an injury— that brings back all those old feelings.
“I couldn’t find comfort in anything,” Rita said, speaking of when her daughter was diagnosed. “It was like the end of the world. And I knew what she was going to go through, because I had been there... She got it from me. She definitely got it from me. I still feel guilty to this day.”
It’s not easy for the children, either.
Katie has fought depression and her mother, Jennifer, doesn’t just have to deal with her own fears, but also her daughters.
“She gets so scared if she has a funny feeling, like, ‘Oh, am I going low?’” Jennifer said, sharing Katie used to beg her everyday to go back to her old life.
Now, the 8-year-old’s biggest question is whether she can wear lip gloss. Katie asks because she’s concerned if she licks her lips, she’ll increase her sugar levels. Rita looks at her, dead in the eye, and says, ‘Of course you can wear lip gloss. It won’t do anything.’ Katie smiles.
In some ways, Kellie is lucky. She likely won’t have to watch her son battle depression. It’s still a possibility of course, but she recognizes the small blessing in having him diagnosed so young.
“We both kind of thought it was a blessing,” her sister, Kristen, said. “It’s a curse in some ways because his blood sugar is harder to control, but he won’t really know any different.”
Each year Kellie marks the anniversary of Hayden’s diagnosis with a community 5K Walk/Run in Waynesville City Park. The proceeds from the event go to support the Juvenile Diabetes Research Foundation (JDRF) programs.
She admits the anniversary is painful, but decided instead of making the day one of sadness and guilt, she’d do something to support finding a cure. Last year, more than $5,000 was raised.
She’s also started a Web site, copingandhoping.com, dedicated to the parents of children with juvenile diabetes because she’s discovered while there’s a lot of information available, there’s not much geared toward the parent.
More than anything, Kellie just wants other parents who are going through the disease to know that they are not alone.
“I felt very isolated (when Hayden was first diagnosed),” she said. “The diabetes adds a gut-wrenching level to parenting... It’s very comforting to be around other people who understand.”
That comfort takes her miles, and even on the worst days— the days where it’s just five minutes to five minutes— the strength she draws from others sees her through.
“We’re going to hope for the artificial pancreas,” she said. “We’re hoping that what we’ve done is enough.”
—For more information about juvenile diabetes support, contact Kellie Kowalski at 573-336-0103. Or visit the JDRF Web site, at www.jdrf.org.
