The Hebenton's Life with Diabetes

Below is a letter Michelle Hebenton wrote for Alberta Diabetes Foundation. Reading her story, in her words, gives a poignant look into life with diabetes. Whether it is you or a loved one living with diabetes, it affects everyone.

Dear Friend,

My name is Michelle Hebenton, and I am a mother to a child with diabetes. Like so many people, we, as a family, knew nothing about diabetes two years ago, not a single thing. We didn’t even know what diabetes was. Our entire life changed instantly when our daughter Heyden was 21 months old and diagnosed with type one diabetes.

The weeks before her diagnosis, we noticed a few things that could be considered odd, but at her age, the symptoms could have been easily attributed to something else. Heyden asked for drinks more often, and we thought it was because she was learning to verbalize. She needed diaper changes several times throughout the night, but we were first-time parents and thought it was normal. She was lethargic, but we thought it was because she was growing. At one point, my mom mentioned that it could be type 1 diabetes; my husband, Jesse, was angry. He didn’t want to consider diabetes as an option.

We called 811, and they suggested we keep an eye on her, but they didn’t give us a sense of urgency. We brought Heyden to our doctor, but she didn’t seem overly concerned either. The following day, Heyden stayed with my mom and dad, and when we picked her up, she wouldn’t even get off the couch. She had vomited during the night. My dad was especially concerned. He had tried to take Heyden to the park, one of her favourite activities with her papa. She only made it half a block before asking to go home.

When we got home, Jesse and I were worried. Heyden could barely open her eyes; she vomited again and felt limp in our arms. We took her to the ER. We mentioned that my mom thought it could be diabetes, so the nurse did a finger poke (we didn’t even know what that was at the time) and immediately seemed concerned. He returned with a doctor. They closed the door as asked us to sit down. We knew then. The doctor told us Heyden had type one diabetes. We needed to have her transported to the Children’s Hospital immediately because she was extremely unwell. We asked if she would just take a pill and get better. The doctor looked at us and said this was a life-long disease, and it would change our entire life. It did.

From there it was a blur. Heyden was in diabetic ketoacidosis (DKA), a life-threatening condition, and a semi-coma. An ambulance transported our almost non-responsive little girl and Jesse to the Children’s Hospital while I went home to pack some things for us, Heyden, and her one-month-old sister, Lilly. We were in complete shock. We stayed in the hospital for the next four days, surrounded by nurses, doctors, endocrinologists, and educators. We received a crash course in carb counting, giving insulin injections, doing finger pokes, the different types of insulin, and using her diapers to test for ketones. We hadn’t even heard of these concepts, and now, overloaded with information, we had to keep our daughter alive.  

Going home was terrifying. It was really intense. We had newborn, so we were already exhausted. Now we were exhausted, scared, and devasted. I had a hard time coping, and I became obsessed with carb counting, administering insulin, and record keeping. I was completely overwhelmed by the idea that making a simple mistake could not only cause my daughter to get very sick but could kill her.

One day Jesse was away, and I was home alone with the girls. I gave Heyden her insulin, but she didn’t eat enough of her snack. The insulin was hitting her hard and quickly. I gave her a finger poke, and her blood glucose was extremely low. Her eyes rolled in the back of her head, and she couldn’t drink the juice she needed to raise her blood glucose levels. The baby was crying. Heyden was limp on my lap. I was trying to put some icing sugar in her mouth because she wouldn’t take anything else. Lily was screaming, Heyden was literally dying in my arms, and I had to make sure she woke up again. It was both a nightmare and a regular day in the life of a parent of a child with diabetes.

As Heyden’s primary caregivers, diabetes had us physically and emotionally drained. All we could do was keep our daughter alive. My mom and dad immediately stepped up. My mom basically moved in to help. Jesse had to go back to work, but because Heyden was only a baby herself, giving her the insulin needles took two people- one to hold her in a warm embrace and one to inject the insulin. Mom and Dad created recipes with carb counts, and they helped care for Lilly. They made Heyden feel that she had as normal a life as possible. When Mom and Dad weren’t with us, they did their own research and learned all they could. They often refer to themselves as the caregivers to the caregivers. Mom and Dad are in Heyden’s daycare group chat and receive alerts directly from Heyden’s glucose monitor- they are a secondary safety net both during daycare and overnight. All three generations of our family are involved in Heyden’s diabetes management, and this disease affects all of us in so many ways.

Six months after Heyden was diagnosed, Mom and Dad helped us move forward with the insulin pump – another huge learning curve. With insulin injections, we had a groove. We understood what wewere dealing with. Learning a whole other form of technology is scary, and it’s another piece of equipment attached to her body all the time. We had to hold her down for three months just to put a pod (the part of the pump attached to her body that delivers insulin) on her. Slowly, Heyden started to understand that there were fewer needles, only one owie every three days instead of three times daily. The insulin pump stopped Heyden from needing needle corrections overnight, which made a huge difference. It sucks for a parent to wake up their little girl to poke them with a needle.

When Heyden started daycare, it was an additional stress point for our family. Of course, sending a child to daycare, preschool, or kindergarten always involves stress and sadness. When your child has diabetes, trusting someone else care for them when you’re not there is terrifying. It’s a very high-pressure situation – as it should be because it is life or death. We can receive up to 60 messages on the daycare group chat during while Heyden is there. It all depends on what kind of day diabetes is dealing her.  

From the outside looking in, people might glance at diabetes and see it at the same level as a peanut allergy. While a peanut allergy can cause an anaphylactic reaction and be life or death, managing it can be as simple as avoiding peanuts and learning to use an EpiPen. We want people to understand that diabetes is all-encompassing. Everything, from hormones to different foods, can have serious consequences, and life-threatening changes can happen quickly. Life-saving intervention happens multiple times a day. My mom once said that spending a day at our house is like spending a day in the fire hall: You’ve got all sorts of alarms going off all the time.

We will manage Heyden’s diabetes and keep our daughter alive until she can handle it independently. If Lilly also gets diagnosed, we will follow the same path. Our ultimate dream is that neither will deal with the daily frustrations, fear, and complications. We hope they never experience the serious long-term complications that so many people with diabetes deal with – because someone will find a cure before they get there.

We support ADF because they want the same thing we do – a cure and the option for everyone to live in a world without diabetes. We hope you will do the same by donating towards cutting-edge research today. Our family and the families of millions of others thank you for propelling research forward toward this common goal.

With hope,

Michelle