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A Silent Struggle

January 7, 2019

It’s time. There’s no putting it off any longer, despite his protests. Reece grabs the blanket he’s been hiding under and ties it around his neck.

 

“It’s my super hero cape,” the six-year-old says. He knows the pain that is coming.

 

Danielle quickly preps his new OmniPod, pulling off the packaging and preparing the device with the proficiency and steadiness of someone who has clearly done it numerous times. 

 

“We’re going to move it up here, okay?” she tells her son and places the unit on his arm. He nods and grips her other hand.

 

It all happens in a moment, but the tension in the air leading up to it is almost palpable. 

 

He squeezes her hand. She squeezes the unit. Pop. The needle pierces his skin. Reece winces. The unit is in place. 

 

Then they have to do it all over again to replace his Continuous Glucose Monitor on his other arm. 

 

“It’s a lot like bringing your children in to get their vaccines,” Danielle explains. Except she has to administer the pain herself. And it’s not once a year or every six months. It’s every 3 days for one unit, every 10 days for the other, forever.

 

Reece Covey has Type-1 Diabetes. The autoimmune disease prevents Reece’s body from producing insulin, which is essential for controlling the amount of blood sugar circulating in his body. Attempting to control it manually is a constant juggle between providing enough insulin to counteract the sugar intake, and likewise, enough sugar to counteract the insulin production. 

 

Too high of insulin can lead to hypoglycemia and ultimately death. Too low of insulin can lead to ketoacidosis and ultimately death. As Reece’s caregiver, Danielle is constantly struggling to keep her child alive.

 

 

It was just after Reece’s fifth birthday when the Covey’s world turned upside down with the diagnosis. The disease is not preventable, and unlike the relative disease Type-2 Diabetes, it has nothing to do with diet or lifestyle. Reece’s diagnosis came out of the blue.

 

A military family, the Coveys were preparing for a three-year assignment in Japan. Danielle, a flight attendant, was excited for the move and the adventure for her family. She and Reece decided to take a trip to Oregon to visit family before the move when she realized something was wrong.

 

“We were on the plane and he had to go to the bathroom time after time. And each time it was an emergency. But he also couldn’t drink enough water. He had drank a gallon before noon,” she explains. 

 

There had been signs leading up to this, but she wrote them off as most moms would. Reece had wet the bed, which he never did. He had accidents when he couldn’t get to the bathroom in time, again something that never happened. But she thought it was allergies, a cold, because why else? Her husband, Brian, had googled the symptoms and mentioned diabetes, but again, there was no reason to think their son would have a major disease.

 

But after that flight, there was no denying something was wrong. Danielle phoned a long-time friend, who was a physicians assistant and also has Type-1 diabetes herself. She was told there was an easy way to test - grab some ketone strips from the local pharmacy and check his urine. Danielle did and phoned back with the results - the strips were as dark as they could be. 

 

“She told me to go to the hospital. It was Easter day so I figured we would go later. She said no, take him to the Children’s hospital immediately,” Danielle says. 

 

“We basically walked right back and they tested Reece’s blood sugar. It was 695. Normal is 70-120. It was a very quick diagnosis.”

 

The inconvenience of an ER trip on Easter pales in comparison to life with a T-1 child. Brian still had to go to Japan, but Danielle and Reece had to stay behind. Instead of traveling the world with the job she loved, Danielle was home learning the complicated management of insulin, checking and changing monitors, and trying to keep it together for her son, who was forced to become stronger than any child his age needs to be. 

 

Danielle had to become an expert on diabetes, an expert on counting carbs and calculating her son’s needs, an expert on her child’s behaviors and what were the signs and symptoms of the disease, and most importantly, an advocate for her child.

 

 

“It’s hard at times to distinguish - is this typical 6 year old behavior or is this the disease? I’m constantly trying to walk that line,” Danielle says. “When blood sugar levels are off, you don’t feel good. Think about being ‘hangry’ - a six-year-old can’t rationalize that feeling.”

 

And then there’s the day-to-day realities that never get easier. While Reece can eat anything - yes, he can have cake and candy like anyone, it has to be monitored and controlled and offset with insulin. So every time he asks for a snack, says he’s hungry, etc., it’s a juggling act. 

 

“It’s not a matter of walking to the pantry and giving him a granola bar. It’s checking blood sugar levels, thinking about when our next meal is, calculating the carbs in the snack, determining when he can have it and off-setting it with insulin,” Danielle says. “So on average it takes 20 minutes.”

 

That’s a long time to hear your child upset wanting food. That’s a lot of work for a granola bar. 

 

While the monitors will keep tabs on Reece’s insulin, there is a lag, and it doesn’t directly communicate to the wireless insulin pump to administer the insulin. So Danielle gets alerts from the monitor to her phone, then has to physically get within 20 feet of the insulin pump and tell it how much insulin to give Reece. Or on the flip side, if his insulin gets too low, she has to give him sugar to offset it. 

 

This is the balancing act she plays all day. And all night.

 

“I’m up at midnight and 3 am every night, checking to see what his levels are,” Danielle says. “It’s much easier to give insulin through the pump than wake him up to make him have a snack, so I have to stay ahead of it.”

 

 

It’s been over a year and a half since his diagnosis and a year and a half since she’s slept through the night. That’s a year and a half of constant worry and keeping tabs.

 

“I’ll be honest, even now, every couple of weeks I’ll break down,” Danielle admits. “It’s exhausting. And of course I wonder why us. How did this child go from being so healthy to fighting to stay alive?” 

 

While the management of his disease has become more of their norm, challenges continue to arise. Recently Danielle picked Reece up from school and he was on the verge of tears. At school he has an aid who is able to administer his insulin and snacks. Apparently she wasn’t available when the teacher was handing out candy in Spanish class. So Reece was told he couldn’t have any. 

 

“He was upset because he was the only kid who didn’t get a treat,” she says. “At his age he doesn’t really understand it all yet, but it’s becoming clearer that things are different for him.”

 

And that drives Danielle’s biggest fight - to keep life normal for him and to help others understand that Type-1 kids are normal kids too.

 

“They can have what everyone else has, they just have to manage it,” Danielle says. 

 

Danielle is fighting for normalcy in her own life too. With Brian back from Japan and a new duty station, she recently went back to flying and is learning to take on Reece’s care as a team and relinquish some of the control.

 

It’s the reintegration struggle most military families have, just amplified. 

 

“I had just landed in Amsterdam when I turned on my phone to an alert. Reece’s blood sugar was super low,” she tells. It was 3 a.m. in the states." 

 

“I sat there struggling - do I call or do I trust that my husband heard the alarm, is awake and treating him? It’s hard to simply trust someone else, even my husband, because if left untreated he could die in his sleep.”

 

She eventually called and Brian immediately answered saying “he’s okay.” Now they have a system in place for Brian to send a text just letting her know he treated Reece and all is well.

 

 

“We are finding our balance and learning to do this together,” Danielle says. 

 

This disease, this new reality, this daily struggle, can lend itself to self-pity and feelings of frustration, but Danielle says she moves forward with a mindset of compassion.

 

“Everyone has their silent struggle,” she says. 

 

Maybe someone is having a bad day. Maybe someone lost their job. Maybe someone is struggling with depression. Maybe someone has a child with Type-1 diabetes. 

 

“The best thing we can do is treat everyone with compassion.

 

 

 

 

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