T1D Moms on Screening Siblings, Fierce Advocacy, and Letting Go of the Reins

Caring for a child with a chronic illness like type 1 diabetes (T1D) is like taking on a full-time (unpaid) nursing job in addition to the one you have. Diabetes management requires you to be on call 24/7, with your child’s life in your hands. And as T1D mom Kerry Murphy puts it, when you have a T1D child, “diabetes is an emergency all the time because every decision and every treatment can have real consequences.”

Whether you’re dealing with a failed CGM site, a dead pump battery or a case of the flu on vacation, it’s a disease that is never convenient.

The parental roles of nurturing, teaching, and protecting are expanded through daily lessons, including counting carbs, checking blood sugar, and managing insulin.

The endless care never stops, but neither do the deeply woven connection with your child, the celebrated achievements that only a T1D family understands, and the bonds of love that test us daily.

T1D Strong celebrates all mothers everywhere, especially those who face additional challenges.

Here are two mothers who have gone above and beyond basic type 1 diabetes care. They’ve led efforts in fundraising, championed advocacy initiatives, and dedicated themselves to educating and empowering other mothers in need.

Have you heard the joke: “I just had the best night’s sleep,” said no type 1 mom ever.

The Benson Family

Katie Benson, mom to two type 1 kids, said that her husband’s grandfather was their only known relative with type 1 diabetes. Daughter Kali, now 21, was diagnosed at two. “She was basically in a diabetic coma,” said Benson. “She started wetting through diapers and would stay up all hours of the night screaming until we fed her more food.”

Unfamiliar with the signs of T1D, Benson said they initially thought Kali had the flu, as the virus was circulating in their community.

Signs of diabetes can be similar to flu symptoms

• Vomiting
• Stomach aches
• Lethargy
• Increased thirst and hunger
• Increased urination

Kali started throwing up days before her diagnosis and was only waking to throw up. She was in intensive care for three days with full diabetic ketoacidosis (DKA).

“My husband and I looked at each other that first night in the hospital as our little baby girl lay in bed. It was terrifying and overwhelming, but we felt at peace, knowing it would all work out, and it has,” said Benson.

Their experience with their son, Tate, diagnosed at age four, was much different. They noticed the signs right away. “I knew in my heart what it was, but I was in denial,” said Benson. “My husband had a dream the night before we took his sugar, and it was high.”

Fierce Advocacy

The education was quicker since they had six years of experience; however, there was no diabetes expert in the ER. “I was grateful for my previous knowledge because the floor doctor tried to give him 11 units of Lantus.” Benson replied, “No, you are not. You will kill him. I was grateful I could advocate for him and keep him safe.”

The Murphy Family

When Kerry Murphy’s daughter, Violet, was diagnosed at age three, they were already familiar with the disease. Ten years into her marriage, her husband, Alex, was diagnosed with T1D at age 37 after initially being misdiagnosed as type 2. Alex’s younger sister was diagnosed at age 12, and niece, Audrey, at age two.

“While Violet was in the hospital, I had to give her the first shot,” said Murphy. She was jumping all over the bed, crying. Murphy said, “I know you’re scared, and you don’t want to do this; I don’t want to do it either, but we have to. I don’t care if you’re kicking or screaming; we’re doing this. Since that day, I think she’s got that it doesn’t matter if you’re tired and crying; we have to do it anyway.”

Diabetes is not only intrusive, it’s so inconvenient.

Diabetes Life Lessons

“It bleeds into all areas of your life,” said Murphy. “It’s a constant interruption like someone constantly tapping on your shoulder when you’re in the middle of something.”

“I think something I’ve really tried to instill in her is to leave room for these interruptions. When diabetes taps you on the shoulder, it can disrupt your nervous system,” said Murphy. “If I could teach her anything, it’s to handle the inconvenience of this disease without letting it throw her off. To calm herself quickly, do what needs to be done, and return to what you were doing.”

Off to School with T1D

Trusting someone else with your T1D child’s care at school can be terrifying, whether it’s a teacher, coach, or school nurse.

Benson and T1D mom, Kerry Murphy, had different experiences with their school systems. Benson said the school was very supportive, but she also had the help of her mother with daughter, Kali, who worked at the elementary school. “She gave shots, took sugars, and had the Dexcom Follow app.”

When son Tate qualified for all-day kindergarten, Benson took a teacher’s aide job at the school. “It really scared me to leave him there all day. It was a huge blessing to be in the school with my kids.”

Benson also visited the classrooms every school year and spoke with the children about T1D. “I read a book, and we talked about how they couldn’t ‘catch it,’—which was one child’s fear.”

Murphy’s experience with the school system was more trying. She fought (and won) for the right to have the school monitor her daughter’s continuous glucose monitor (CGM) app.

Most importantly, Murphy’s plight didn’t stop with Violet’s care. She wanted to educate and advocate for the same rights to apply to all T1D children nationwide.

Murphy thought the school nurse administration would embrace the technology, but that wasn’t initially the case. “Looking back, I was a little naïve. That’s when I realized they didn’t understand how important and simple it is to implement. It’s an alarm that could save a child’s life,” she said. “Every child with T1D deserves this accommodation, not just those whose parents fight for it. Slowly school districts across the country are starting to embrace this technology and are updating their policies to reflect it.”

She founded FollowT1Ds, an organization that encourages schools to utilize CGM caregiver apps to safeguard the health and well-being of children with type 1 diabetes.

“I just didn’t want parents to go through what I went through,” Murphy said. “They could come to their child’s school health meetings armed with the right information to confidently send their kids to school without fear.”

With her team of volunteers, Murphy has helped parents across the country learn to advocate for their child. “Any parent who wants to advocate or bring awareness to make their child’s experience safer at school is one of us.”

Testing Siblings for Type 1

Researchers now know type 1 diabetes has three distinct stages, and the first two can go undetected for years.

• Stage 1: An individual carries autoantibodies without noticeable symptoms and maintains normal blood sugar levels.
• Stage 2: Autoantibodies are present, but there are no physical symptoms of T1D. However, blood sugar levels are abnormal but not persistently high.
• Stage 3: Symptoms appear with high blood sugar levels; insulin therapy is required.

To Screen or Not to Screen

Benson left the decision to be tested up to her two older sons. “They both said they didn’t want to be tested and if they got diabetes, they’d deal with it when it happened. They didn’t want to live their life wondering if or when.” However, Benson said on numerous occasions, they’ve come into the house feeling unwell and asking to do a glucose test. “It’s always in the back of their minds.”

Murphy’s two older sons tested positive for T1D autoantibodies, and TrialNet is following one at the University of Virginia. “I felt a responsibility to my sons, who weren't adults at the time,” said Murphy. “And I didn’t want my fear of not knowing to stand in the way of being proactive with their care and minimizing the destruction to their bodies.”

(Some clinical trials, like Tzield (teplizumab), have shown promising results in slowing down the progression of T1D by preserving beta cell function.)

“Also, I wanted to have advanced time to prepare; not only to have the supplies and competence to do it, but you need to be emotionally prepared.”

Murphy’s son Chase, now 18, tested positive with three autoantibodies but doesn’t have irregular glucose numbers yet, so he’s not considered for intervention. “But every single time he has any symptoms, I’m checking his blood,” said Murphy. Her son, Colyn, age 21, tested positive with one autoantibody but hasn’t been retested.

“This push to get everyone screened now is so new. Some families have historically avoided it because they didn’t want to know, but I think that is starting to change,” said Murphy. “Everyone’s situation is different. I’ve spoken to a lot of people who have the kit at home but haven’t used it yet, and I get why.”

“Diabetes is already in the house, and it’s an emergency all the time,” Murphy said. “You’re constantly changing your child’s devices, giving sugar, giving insulin; right now, so testing for future risk of T1D just doesn’t seem urgent in the same way. The kit gets put on a shelf to deal with later and it just doesn’t get done, sometimes because life is too busy and sometimes because you’re afraid of what it might say.”

Letting Go of Control to TEENAGERS

There’s a fine line between taking care of your type 1 child and doing too much. There comes a time when you have to step back, teach them, and let go of the reins.

When your T1D reaches adolescence, it becomes easier in some ways and harder in others. Hormones, growth spurts, and anxiety all come into play, as does forgetfulness. You want them to be independent, but sometimes trusting them with their health is hard.

“It was easier because you could reason with them a little more,” said Benson. “It was also harder because they would become more defiant. And they would grow and be hungry ALL THE TIME, especially Tate. And hormones make things crazy! There are many factors to consider—workouts (Tate and Kali both ran cross-country), what they had for lunch, how long they left their pump off, and for females, having periods can affect blood sugar levels, which is no fun. But you figure it out.”

Benson said her kids are pretty independent, and when Kali was 14, she kicked her off her Dexcom Follow app. “She wanted to do it herself, minus the parental input, and she’s done great! She comes to me when she has questions or needs help, but for the most part, she has been very independent for a long time, and her A1c’s been really good.”

The Bensons just dropped Kali off at college. “I think we can let go of the control, but we’re never going to let go of the worry. When they become adults, it’s so HARD,” said Benson. “I think letting our kids know that we trust them to take care of themselves is important. That gives them confidence and ownership of their diabetes.”

Self Care 101

Taking care of a chronically ill child can easily lead to high levels of anxiety and diabetes burnout. As moms, we always put ourselves last. “Take time to take care of yourself,” said Benson. “Exercise, meditate, pray, get a massage, spend time with friends, but also spend time with your partner (no kids allowed).”

“And sometimes it just helps to give it a good scream! Or a good cry, that’s ok too,” said Benson, who also relies heavily on her faith.

Murphy had similar advice. “I think definitely there’s a grief process; carve out time for yourself,” she said. “There are some really good groups out there on Facebook. Finding that community, virtual help is 100% key.”

“Believe in yourself even when you think you can’t do it,” said Murphy. “Reach out to others, research, and figure out the math calculations. Sometimes you need to get up at four a.m. when you have to get up at six for work; there are so many ways you’re going to have to challenge yourself to do things you don’t want to do.” 

Murphy found that practicing yoga helps her when she needs a break. “I really think carving out this time for myself has helped so much,” she said. “When you’re in yoga, it’s strength-oriented; it forces you to quiet your mind and just focus on that one pose.” 

You Need a Support System

Both moms agree that having a sound support system is vital. “You've got to let people in. Shared burdens get lighter," said Benson. A great way to meet other parents is through fundraising. Benson was on the Breakthrough T1D Walk committee for four to five years. “It was such a great place to make friendships and connections with other parents doing the same thing I was every day. It’s hard, but it gets easier." Her advice is to “Not worry ourselves into the future. In the beginning, it’s such a rollercoaster. Build that support system. Take it one day at a time and say, 'I can get through this day.'”