You may remember Randall Barker in Texas, whom we introduced last summer as one of our 2016 DiabetesMine Patient Voices Contest winners. He's an active advocate who raises his voice for our Diabetes Community in a variety of ways, from engaging with lawmakers to creating his own non-profit group to host an annual 5K run and walk fundraising event.
While Randall's been a part of our pancreatically-challenged club since 1991, he has the unique position of also being a parent of a child with diabetes. His daughter Emma was diagnosed in 2013 at age 10, just like her dad.
Today we're happy to host Randall, as he shares some insight about the challenges of living with type 1 diabetes himself while also parenting a T1 child.
Father-Daughter Diabetes, by Randall Barker
My daughter Emma and I share similar stories when it comes to our diagnosis with type 1 diabetes. We were both diagnosed when we were 10 years old. Both of us had just completed the 4th grade in school and we were both diagnosed during the summer months prior to entering the 5th grade in school. Neither of us was symptomatic, but we were both diagnosed after routine doctor visits. I was diagnosed after having a physical for summer camp. There was sugar in my urine which most are aware is a common sign of diabetes. My daughter had a stomach bug and during the visit with the urgent care doctor also had her urine screened. It also came back positive for sugar.
Looking back, I was never concerned about passing diabetes onto my children. Honestly the thought never really crossed my mind until Emma was diagnosed. Emma has two younger brothers that I pay more attention to now. In fact I can recall at least one instance with each of her brothers where I got up earlier than normal in the morning to do a finger stick to check their fasting blood glucose level.
When my daughter was diagnosed, both her mother and I were shocked. Her mother reacted the same way as any other parent when they learn their child has diabetes. There was the sadness, anger, but ultimately acceptance.
I went through similar emotions, yet for me it seemed easier to accept. I knew that my daughter was capable of handling this challenge. I was also encouraged by all the advancements in how diabetes was being treated. I have observed so much progress in devices, medicines, and techniques that helped many diabetics lead normal healthy lives that even though I knew it would be a challenge, I knew my daughter could handle the challenge.
Growing up while watching her type 1 father go through his daily routine, Emma seemed to grasp concepts surrounding her own diagnosis quickly. In fact, she was drawing up her own insulin injections and had given herself her first shot before her second "official" day as a diabetic ended. She was admitted into the local hospital where she began learning the basics of counting carbohydrates and checking her blood glucose.
The Technology Choices
One of her hardest decisions was picking a glucose meter she liked form the assortment the hospital CDE offered. I recall her asking her doctor before she was discharged when she would receive her own insulin pump like her dad's. She was shocked when her doctor told her she had to first learn how to handle giving her injections before she could begin using an insulin pump. He said several of his patients received their pumps after being diagnosed for a full year. Emma learned the initial concepts well enough that after being diagnosed for three months she received her first insulin pump.
When it came to pump choice, she again was faced with a difficult decision of what insulin pump she wanted.
I have always used the Medtronic pumps since those were the main ones on the market when I received my first insulin pump. For her, though, more options existed -- Medtronic, Animas, Tandem's t:slim, and Insulet's Omnipod. Ultimately, Emma chose Medtronic in part because I am happy with it and can help troubleshoot any problems that arise.
For her, choosing, a meter was like choosing an additional accessory to coordinate an outfit. She chose the meter that works with her pump: the Contour Next Link. While the Medtronic pump system has a CGM option, Emma and I recently switched to the Dexcom CGM. The features of the Dexcom system seem to be better than those of the Medtronic Enlite CGM. It may be our experience, but the sensor stability and reliability for the Dexcom sensors seems to be far superior to the Enlite sensors. The only drawback is that the Dexcom does not communicate with the Medtronic pumps. This may become a determining factor soon for our choice in pumps because we are both due for upgrades soon.
We also both use smartphone mobile apps. Sometimes, it’s overwhelming with all of the different apps that are out there, as each one claims to have features that make it better than the others. There are a few that we rely on heavily, though -- particularly those that help us see our Dexcom data. There have been times when I text her to make sure she's keeping up with her glucose trends. The other side to that is that Emma can also see my data via the Dexcom Share app. There are instances where Emma has checked on me because she received an alert on her phone regarding my glucose values.
In fact, I was recently on a trip across the globe in Africa, and while I was there I was able to see Emma’s CGM data! There was one instance where she checked on me because my blood sugar dropped alarmingly low. It’s a great system we have where we can both check up on each other.
Not Helicopter Parenting
I have on more than one occasion found myself speaking to people about parenting a T1 from a T1 perspective.
It's a tricky situation and requires a delicate balance. For me, growing up with type 1 and having a parent who had no previous experience with diabetes was difficult. There was a steep learning curve for my mother and I. It was not easy and led to me going through several instances of diabetes burnout. Eventually I reached a point where I decided to care about my health and made a change for the better.
I learned a substantial amount about diabetes on my own and a lot of that knowledge I want to pass on to my daughter. It is a thin line that you have to walk; you want your child to have the experience to be able to handle diabetes situations on their own, yet you don’t want them to endanger themselves or their body.
The term “helicopter parent” comes up frequently when discussing diabetes and children. While I do not feel that I need to watch my daughter 24/7, but I do keep an eye on her.
When discussing my concerns of how she may or may not be doing something for her diabetes care, I try to take into account her perspective and relate to my own experience growing up as a T1. There were times when I was given ultimatums that led me down a path of resentment to diabetes. The resentment led me to burnout, and burnout led me to making unhealthy choices. I want my daughter to always feel as though she has an option and a choice when it comes to her health.
For instance, my daughter likes to take breaks from wearing her CGM. While I love the ability to see her blood glucose levels and the security that provides, I also understand how it feels to be “tethered” to a device 24/7. I allow her to take her breaks with the understanding that she still has to do her fingersticks and that she may even have to do more of those. I believe by presenting an option that Emma sees my concern, but also realizes I am giving her the freedom she needs and desires. There are times when I want to tell parents I know raising T1’s that they need to allow their children to grow and to not be so restrictive when it comes to diabetes.
I have seen where parents are in complete agony because they cannot see their child’s CGM data while said child is at school. Another instance that bothers me is when they do not allow a child to have what I call "regular" food. If the child does not have an allergy to any certain foods, I personally see no reason to restrict a child’s food intake because the food is not "diabetic-friendly." In my opinion, let them eat the cake, just make sure to bolus enough to cover the carb intake. As long as the child is not being put in an unhealthy situation, then in most cases the outcome will be okay and the child should not be restricted. The child needs a chance to grow up and develop their own experience handling their diabetes care. I do even have to remind myself that Emma is allowed to make mistakes, and that she actually needs to make certain mistakes in order to know what to do.
Serving as a Diabetes Role Model
Emma has been lucky to see me at a point where I have embraced my diagnosis, and use it to empower myself.
I do substantial work in my community and area when it comes to diabetes issues, and I push Emma to embrace diabetes too; she is definitely doing that, although sometimes she'd rather it not be a focal point. When Emma was diagnosed we held a walk at her school. She was very involved with it and it helped educate her friends about diabetes. The next year she moved on to junior high, and when I asked her about having another school walk, she begged me not to. Of course I agreed so that she would not be embarrassed.
She does embrace her diagnosis, though, and is there to help other diabetics she knows. In fact there are four other type 1 students in her grade. Recently, Emma was telling me a story where she recognized one of her friends was going low and ended up giving that friend glucose tablets and helping get her to the nurse’s office.
Diabetes has also brought us together. We have a different bond than a typical father and daughter; in fact I would say it is stronger.
I recall a funny story when we were traveling somewhere in the car. It was Emma, her brothers, and me. For some reason her oldest brother thought Emma and I were being grumpy, so all of the sudden he asked us both, “Do we need to stop the car and you both check your blood sugar? Are you both low because you are both grumpy and that only happens when your blood sugar gets low!” His face was priceless when we both immediately turned around and said, “No! We are not grumpy and our blood sugar is not low!” I’m not quite sure what he mumbled after that, but he has never uttered "grumpy and low" again to us.
As you might imagine, being a PWD and parenting a PWD child brings in a whole new set of challenges to parenthood. You have to embrace those challenges and realize that things do get better. My daughter’s diagnosis actually helped me embrace my own diabetes even more. And for my daughter, it has helped her to see how her father has overcome the challenges she faces daily.
Thanks for sharing your story, Randall! We have so many options in D-Tech these days that it's sometimes necessary to take a break for our sanity. Wishing all the best for you and your daughter.