Learning takes time - and community
The Gibbs family navigates a life-changing diagnosis
A version of this article originally appeared in The Mennonite
In 2015, Bethany Gibbs learned that her then 3-year-old son, Will, had Type 1 diabetes. Four years later, Bethany is still learning about the illness – with support from family and community.
Bethany, a fourth grade teacher at Eastern Mennonite School, lives in Harrisonburg, Virginia, with her husband, Steve, and her two sons. William, the oldest, is 7 years old, Eli is 5 and they have another baby due in September.
The family first noticed something was wrong shortly after Will turned 3. His preschool teachers mentioned that he would wake up in the middle of his nap crying for water. Bethany noticed that her son was drinking a lot – around six to eight water bottles a day.
“I knew that was a symptom [of diabetes], but it doesn’t run anywhere in our family,” Bethany said. “There definitely were some red flags that I tried to excuse because you assume it’s something that will pass.”
Bethany said she will never forget the appointment when the doctor diagnosed Will. When the nurse checked his blood sugar, it was so high the glucometer couldn’t read it. They sent the family to the bigger pediatric unit at the University of Virginia, and that’s where they started their crash course in how to care for their toddler son’s chronic illness.
“By the second day they were already having us inject him” Bethany said. “I was like ‘whoa, you guys are the professionals. You should be doing this.’ And they said ‘well, you have to figure it out.’”
Suddenly she was responsible for counting carbs, measuring insulin and checking sugar levels around the clock – basically just keeping her son alive.
Type 1 diabetes is an autoimmune disease where the pancreas stops functioning. “His pancreas is shot,” Bethany said. “[The organ] in his body, but because he doesn’t make his own insulin, we have to give him insulin.”
Many things can affect Will’s sugar levels; the most obvious factor is food.
“We have a range we try to keep him in,” Bethany said. “If he goes too high or eats food, he needs insulin to bring his blood sugar down. If he goes too low, then he needs food.”
Also, if he’s growing fast, the hormones in his body can affect his sugar levels. Being active, like when he’s playing soccer, make his levels go down.
“It’s all the time,” Bethany said. “It’s an all-day disease.”
Bethany didn’t realize their new reality would feel so isolating at the beginning. People in the community stepped up offering prayers, asking questions and wanting to help, but, still, she felt a powerful loneliness.
“Until you actually live with it, it’s really hard to understand.”
As if the daily care Will requires wasn’t complicated enough, the diagnosis has taken a financial toll on the family – which they expected from the beginning. It was a jarring realization that these costs would follow Will the rest of his life.
“We left the hospital with thousands of dollars of bills,” Bethany said. “I knew it’d be expensive, and it wasn’t going to stop.”
The family is covered by a health plan through Steve’s job at Eastern Mennonite University. Dealing with prescriptions and medical supply companies is an overwhelming but mandatory task for the family.
In 2016, when the prescription coverage switched to a different plan, some of Will’s necessary medication and supplies weren’t covered anymore, so the family called for help.
The Member Services staff at Everence, which administers the health plan, are helping find options on the new plan.
“Sometimes when you have new prescription coverage it’s an easy switch,” said Annetta Good, Everence Medical Service Coordinator. “But, often for diabetics, it can cause chaos since they have many different medications and supplies that are needed.”
On behalf of the health plan, Everence acts a go-between for the Bethany family and the plan partners to manage costs and choices for Will’s care.
Healthcare plans are complicated, but some day-to-day things have gotten easier. In the first month after the diagnosis, Bethany called an endocrinologist every day to report Will’s numbers. Now, she’s learned enough to make more of her own decisions regarding Will’s daily sugar readings without consulting a healthcare professional.
At one point, Will wouldn’t want a snack because he didn’t want to get a shot, creating a negative correlation with food. Getting an insulin pump meant no more syringes. Along with that, he wears a glucose monitor on his arm that is connected to his parents’ phones and gives readings every five minutes. This has proven to be “a game-changer” and infinitely more convenient than taking the readings manually all day and all night.
Even the loneliness isn’t as overwhelming anymore. Just like the Gibbs family has been learning and adjusting, so have the people around them.
With her parents living in the basement and her sister next door, family has offered to help in times when Bethany just needs a nap or to run to the grocery store. She feels support from people at her church, Harrisonburg Mennonite, where even people she doesn’t know very well will stop to check in and ask how Will is doing.
She appreciates the unbelievable online community that is always available when she needs it “since diabetics never sleep.” She’s also been surprised to find out how many other Type 1 diabetics live in her community and neighborhood.
“There have been so many connections with people and that makes it feel like you’re not the only person,” she said. “There are other people going through it.”The Gibbs family is still learning. They’re learning how to deal with Will’s daily care, how to navigate the healthcare system and how to find community when things feel isolated and lonely.