Parenting Under Pressure: Two T1D Dads Share Their Stories

Raising young children with type 1 diabetes (T1D) through the early toddler years is a journey that can be frustrating, exhausting and exhilarating. It's possible for children younger than six months to be diagnosed. When your child resists insulin or refuses treatment for a low, it can feel terrifying to know their little lives are in your hands. It takes patience, fortitude and love to navigate those early years.

T1D’s dad, Daniel, spoke about how he uses humor to get him through the frustrating days. The second dad, Tim, has three type 1 daughters, two diagnosed at age three and their other at 19. Tim started blogging, and Daniel posts humorous memes. They've both turned their experiences into online support for fellow parents.

Tiny Humans-Big Challenges

Type 1 diabetes is difficult to manage at every age, but try convincing a two-year-old to drink their juice when they refuse.

“A two-year-old doesn’t care that we have to get carbs into her right away,” said Daniel, who hosts a T1d.dad Instagram account. “You can only shove a juice box in her face so much. That was the most stressful time when she was young, worrying about whether there would be a point where she wouldn’t eat something when she had to, but luckily, that never happened.”

“Getting her to understand that at certain times she has to do what we ask her to do, even though she’s not hungry or doesn’t want to stop playing – because it’s such a serious issue.” Daniel went on to say, “That part does get better when they’re able to comprehend and have a conversation and understand for their own good.”

Parental Instincts

At the end of 2021, Daniel’s family recovered from COVID-19. However, their young daughter wasn’t getting any better. All her symptoms could have been attributed to the virus, but then she started wetting the bed every night and was hungry all the time. They took her to an urgent care facility, and Daniel’s wife, a NIC nurse, convinced them to do a finger prick. The glucose meter was so high that they couldn’t get a reading, so they went straight to the ER.

“My gut feeling was that the COVID virus triggered something,” said Daniel. “She also had roseola when she was a year old, and we think COVID was the straw that broke the camel’s back. It happened pretty quickly.”

We know that both genetic and environmental factors play a significant role in the development of type 1 diabetes. According to PubMed Central, genetics do not guarantee someone will get the disease, and environmental factors are believed to interact with genetic predispositions to initiate the autoimmune attack.

Advice for Newly Diagnosed T1D Parents

Daniel said the most practical piece of advice is to try to find as many sure-fire, low-calorie snacks that you’re confident they’ll eat at all times.  

He also advises parents to get breaks in the early days. “It feels like you’re really tethered to them. Try to get a few hours of rest and the freedom not to feel guilty about that, so you have more to give in the long term. It’s a marathon, not a sprint. Try to remove as much ego as possible and ask for help.”

Find Your Community

Another tip Daniel and his wife found helpful was finding a community of T1D parents. Daniel and his family became involved with an organization called Type 1 Together, where they attended T1D events and made friends.

“Find people in your area,” Daniel said. Getting their daughter around other kids with type 1 diabetes was "So helpful for her to see that there were other kids with T1D, and she was not alone."

T1D.Dad

Daniel’s wife started writing content for type 1 parents, and Daniel began an Instagram page, T1d.dad, to post humorous memes and to encourage messages for parents with type 1 diabetes. He uses memes from popular shows like Arrested Development, The Office, and Severance to bring levity to the thousands of serious decisions you have to make daily.

 “It was a nice way for me to blow off steam, and it was great, knowing it was helping bring people out of some dark places,” said Daniel.

He started receiving positive feedback from other parents, which convinced him to keep going. For instance, one parent remarked, “This has been so helpful. I laughed for the first time in a couple of weeks.”

Mental Health Boost

Humor helps lighten the burden of managing a chronic illness that comes with anxiety and frustration. Studies show laughter offers instant relief and can be a powerful tool, transforming our struggles into something positive.

Daniel and his wife have a supportive partnership and can usually tell when the other person needs a boost.

“I think giving each other breaks has been the most helpful thing in terms of staying sane.”

Concerning his young daughter, Daniel said, “Finding the right balance between being direct and not overburdening her with the severity of it was important. We want her to understand how serious it is, and so there are a lot of times we have to get down on her level and really talk her through it by saying, ‘Hey, I know you’re having fun, but if we don’t take in some sugar right now, we may need to call an ambulance.’”

Even Kiddos Get Burned Out

“We try to feel out when she’s going through a burnout and when she’s had enough. We don’t  say anything; we just give her a handful of Skittles when we know she’s low.”

They also try to get her involved in her diabetes management. “When we think she has the bandwidth to deal with it, we might say, “Can you go check the label and find the carb amount? She’s been curious about dosing herself, so we’re trying to let her take charge of the disease when it’s safe for her to do so.”

TrialNet Screening

As you can now diagnose type 1 in its early stages before symptoms appear, Daniel’s family tested their other children and themselves for the autoantibodies for type 1 diabetes. They all came back negative.

Early detection for T1D has many benefits, including a reduced risk of hospitalization with diabetic ketoacidosis (DKA). It also provides time for the family to learn how to manage T1D, build a healthcare team, and allow for early intervention through clinical trials.

Three Daughters with T1D

Dad Tim Brand found similar coping strategies when his three daughters were all within a few years of one another. 

Tim and his wife Heather had a young daughter, Audrey, diagnosed at age three. Next, their daughter, Carissa, was also diagnosed at three and a half. When she began exhibiting symptoms, Tim thought, “There’s no way.” But they checked her blood sugar with the blood glucose monitor (BGM), and it read 509.

“It was an interesting six years with two diagnoses,” said Tim. “The Dexcom (continuous glucose monitor) was revolutionary for us to help with the girls’ management, especially since we had another newborn baby on the way."

The Brand’s youngest son, Henry, has, fortunately, tested negative so far for the T1D autoantibodies.

The most painful part of the Brand’s story was when their eldest daughter, Annaliese, two weeks after returning from her honeymoon, was diagnosed with T1D. She was 19 at the time. “I didn’t need the meter. I saw it in her eyes, the same way her sisters looked,” Tim said. “Her blood sugar was over 500.”

Annaliese went to the ER and was in the worst shape of his three daughters. She was in the ICU for two days, with one ER doctor saying he didn’t know how she was coherent since her blood sugar was so high.

“You think with two diagnoses in the family and all our advocacy, we would know, but it creeps up. It’s a dangerous disease that will kill you.”

BleedingFinger.com

During the early years of the girls’ care, Tim started posting memes on X (formerly Twitter), and a few followers encouraged his blog writing. He started BleedingFinger.com and also has a Facebook page for T1D dads, “Dads Battling Diabetes–D-Dads.” A few years back, the "Diabetes Dad Cave" group had a meet-up at a Cubs game.

Watching the girls’ independence expand was uplifting for the Brands. His two youngest daughters use the iLet Bionic Pancreas insulin pump, and the oldest is on the T:slim.

Tim said the technology has taken the burden off them. “They’ve taken control of it, and I haven’t done a site change in a number of years. The older they get, the conversations become less, but they’re still there.”

Grace, Grit and Humor

These devoted dads know diabetes isn’t simply about managing a condition. They show their daughters how to thrive and face challenges head-on, every single day.

Tim’s advice for parents of newly diagnosed kids is to take a deep breath and realize it’s going to be okay. “It’s overwhelming, but it does slow down. With so much to process, take it one step at a time. And finding other parents to talk to is golden.”