Some people grow up being the only person in their entire family with diabetes. And others see diabetes throughout their family members. What is it like to grow up with a parent who has diabetes? And what is it like to be a parent to a child with diabetes?
Today we get to talk with Stan, someone who knows the answer to both of those questions. He grew up with a father who has type 1, and he is now the father to a daughter who lives with diabetes.
Let’s take a look at what he has to share.
Having Family with Diabetes
Q: You grew up among family with diabetes, Stan. What do you know about your father’s diagnosis?
A: My father was diagnosed when he was 10 years old. The story I have been told is that the doctor had my father eat a candy bar, and then they checked his glucose an hour later. His blood sugar was very high at that point. My dad tells me that his doctor (when he was diagnosed in the 60’s) said he would not live much past 21 because of this chronic condition. Although he has had serious health problems and diabetes complications, he is now 67.
Q: Being diagnosed at that time, diabetes care looked very different than it does today. What can you share about his treatment early on?
A: I don’t believe there were finger prick tests at that time for blood sugar monitoring. I believe it was a urine test only. Obviously, there were no CGMs or insulin pumps at all. My dad was very uncontrolled during his child and young adult life. I do remember many times when I was very young that the paramedics were called due to my dad passing out with low blood glucose levels. He has had so many severe low blood sugars over the years that he has not felt the symptoms of low blood sugar for at least 30 years now.
Growing up in a Family with Diabetes
Q: How did growing up with a diabetic father affect your childhood and your whole family?
A: I would say I got to see the results of someone not taking care of themselves as they should have. I really do only really remember the very low blood sugar levels. Everything else seemed like normal daily life.
Q: How is your father doing now?
A: He has had T1D for 57 years, and really did not take care of himself for many of those years. My father had a brain hemorrhage, 4 strokes, and a heart attack, all within a 24 hour span about 3 years ago. Remarkably, he made it through all the medical issues with 90%+ physical ability, but his short term memory has been vastly lost.
My mom, who never really had to watch the amount of healthy food dad ate or tell him how much insulin to take, has struggled to confidently take care of him since then. My father is fully functional, however is unable to make any food, medicine, or insulin decisions for himself.
Being Diagnosed with Diabetes
Q: You were 10 when you got your diagnosis of type 1 diabetes. What do you remember about your experience being diagnosed? How did that affect your life (or your childhood)?
A: My symptoms of diabetes were pretty common. I experienced lots of thirst, frequent bathroom visits, and tiredness. We went for a doctor checkup, and I had lost 25 pounds over 6 months, so everyone knew what was going on. I went into hospital and had a blood sugar of 573 mg/dl. So I stayed in the hospital for a week. All I really remember is having to grow up and mature really quickly. I had to keep track of what I ate, when I ate, take the right insulin, etc. And I was only ten years old.
Q: How did you care for your diabetes after your diagnosis?
A: Well, compared to technology today, I did not pay close to the attention to my blood sugars as we do today. I kind of remember in early 90’s it was still how I felt a lot of the time. If I felt different, test your blood sugar or eat if you feel low.
I was very active in sports as a kid and through college. I ate a healthy diet with these physical activities. My A1c tests were ok, but not great. In the 8s. Again, we had no CGM or insulin pump then.
Diabetes and Family Dynamics
Q: How did your diagnosis and this chronic disease affect your relationship with your father?
A: I could obviously see how my dad didn’t take care of himself over the years. So I knew I needed to take care of myself better. I would say my relationship with my father didn’t change much after diagnosis. But he looked after me and I looked after him as needed.
Q: How are you caring for your diabetes currently?
A: I feel I have fallen into a pretty typical American lifestyle. I played hockey and tennis through college and was in great physical shape during that time. I stayed in decent shape for a few years after college. Then my healthy lifestyle went out the window. I received some promotions at work. I started working 50+ hours per week at a desk, got married, and we had a couple of kids. The next thing I know, I had gained 50 pounds over 10 years.
My blood sugars and A1c went out of control. As part of this, my insulin resistance has dramatically increased, so I have had to work with my doctor on many different combinations of medicines to help me. I did this to myself over a 10 year period, and now I have to work my way back to being a healthier person. I need to choose healthier food and get physical exercise. Lifestyle changes are hard work, but my A1c has hovered around 7.0 for the last five quarters, so that’s a start.
More Family with diabetes
Q: When your daughter Avery was 10 years old, she was diagnosed with type 1 as well. How did her diabetes diagnosis come about? Did you identify the symptoms of type 1 right away, being diabetic yourself?
A: I was very cautious and attentive with our kids as they have grown older, knowing the risk factors and family history. I was especially watchful over my son as he approached 10. However, he is now 14 and has had no symptoms.
I did watch out for our daughter and her higher risk of type 1 as well. Right after she turned 10, she was not feeling well one day. I was out with our son at one of his sporting events, so my wife called and said Avery was not feeling well and was thirsty. They took her blood sugar it was around 240. I told her to eat a light meal and I would be home in an hour or so.
When I got home, we checked her sugar and she was a 440. We knew what was going on, I called her doc and asked which hospital did they want her to go to. Luckily, we caught this very early. She had no real weight loss and no ketones at all. She was in and out of the hospital in two days.
Parenting in a Family with Diabetes
Q: With Avery now being 13 years old, how has the adjustment been over the last three years? How have you adapted to parenting a child with type 1?
A: I am admittedly too hard on Avery with her blood sugars. I know what my dad (her grandpa) has gone through, and I know how I feel these days after not taking great care of myself for a period of time.
She is very smart with what she needs to do, but she is 13 years old. She does not always remember to bolus before eating sometimes or count carbs as closely as she should. That is a bit of a strain for us. She does not like being a diabetic, and she is not the personality to to just roll with it and make the best of the situation.
Parenting in a Family with Diabetes
Q: What was the most challenging thing for you as a parent to come to grips with your daughter’s diagnosis?
A: Knowing this is something Avery will have to manage the rest of her life, whether she wants to or not. Avery is incredibly smart and determined in what she wants to do later in life. She needs good physical health to be able to accomplish those dreams.
Q: Parenting a teen is hard enough, but parenting a teen with a chronic illness is a whole new level of parenting. There’s a certain amount of help you want to provide as a parent, and a certain level of wanting her to take some responsibility as well. How do you navigate that dance?
A: As I mentioned earlier, not as well as I probably should be. She knows what to do, but as she is getting older and more independent, she is not following her doctors directions as well as she could be. That’s hard for me to step back and let her make those mistakes or bad choices that affect her sugars and A1c, which can affect her quality of life. My wife helps pull the reins on me when she sees Avery not liking me directing her when she wants to do something differently.
Diabetes and Faith
Q: How has your faith helped you through this?
A: Well, I’ve said lots prayers for patience. I seem to be way more patient in other areas of life compared to having patience with kids. My daughter and I do butt heads more often, and I believe it is because of consistently talking about blood sugars, insulin pump usage, and insulin doses.
Q: What are your prayers for your daughter?
A: My prayers for Avery are her being able to accept that this is what God has given her in life, and that God will not give her anything that she can’t handle. This is a complex condition, so I pray that she knows we will always be here to help her the best way we can to manage this when she wants the help.
Advice for Families with Diabetes
Q: How would you encourage a parent who has recently had a child diagnosed with diabetes?
A: I would say talk with your child about what they need to do on a daily basis. Be an active listener with doctor visits and let your child speak up. Be good emotional support. And provide what he or she needs to stay healthy and happy.
Stan works as a Vice President of Finance by day. He enjoys watching his son play hockey and golf, and his daughter go horseback jumping and play softball. Stan and his wife Shannon have been married for 16 years. They live in St. Charles, MO with their two teenage kids.
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NOTE: Nothing here should be taken as professional medical advice. Please consult your medical team with questions.