It was early spring 2009 and a storm lay on the morning horizon. My wife was taking our 3-year-old middle daughter to the doctor for some precarious symptoms: continuous peeing, constant thirst, and erratic moods. After the appointment, my wife called me on the phone and the words type 1 diabetes came with a thunderous silence. Little did I know our lives would drastically change that day.
Exactly two years later, type 1 diabetes would afflict our youngest daughter, who was just 3 1/2 years old. Life changed again under that clear blue sky on a Sunday afternoon. So what’s different about raising a child with type 1 diabetes? Let me explain.
Every day (and I mean every day) we dedicate our lives to maintaining our daughters’ blood glucose levels. It can go to an extreme 500 mg/dL high or to a dangerous 26 mg/dL low (regular blood sugar should be 150 mg/dL for a general pediatric number). High or low blood sugar can make them feel awful. We check their blood sugar several times a day. They’re older now and have taken this task of diabetes care over, but even at night we keep a watchful eye on them. Some days diabetes is a lot of work; other days, it’s a pain in the butt.
My wife and I change the insulin in their insulin pumps every three days. Additionally, we have to change the insulin cartridge and site too. Sometimes they cry when the site goes in, and occasionally it bleeds a lot. It’s hard to see your kids in pain.
They also wear continuous glucose monitors (CGMs). Every seven days we change the sensor and that has a long needle to insert. The CGM takes a blood sugar reading every 10 seconds and gives a five-minute average. This has been a life-changing device for us.
There’s a long list of foods that can make their blood sugar go wonky. Therefore, we watch what they eat. We opt for single ingredient foods, vegetables, home cooked meals, but even these options don’t magically create stable blood sugar. They can both eat the same thing, the same amount, and play the same length of time and yet their blood sugars will head in radically different directions. To try to maintain normality, we count the amount of carbohydrates they eat at each meal and dose accordingly with insulin. We’re also mindful of how much fat, protein, and table sugar a meal has since that affects blood sugars. We use table sugar in moderation when cooking.
They other key is moderation. I don’t deny them certain foods, like treats and pizza. My rule of thumb: Once a week for treats, except for pop — that’s a couple of times a year.
The misconceptions about type 1 diabetes can be madding at best. I’ve been asked a million questions about my kids. I don’t mind questions. It’s a chance to educate. But people who make uninformed statements can be tremendously frustrating.
I’ve heard all the clichés about diabetes: “Doesn’t cinnamon cure diabetes?” or “My friend went on the vegan, Hungarian moss extract, no sugar, juniper berry tea diet and reversed their DIA-BEET-US!” These things, along with a long list of others, don’t work.
Trust the D-Dads
Being a d-dad is an earned title: You don’t get it just because your child’s pancreas no longer works. On the most basic level, you have to be able to care for your child’s diabetes. That to me is a no brainer. You don’t have to do it exactly as the d-mom does it. You just need to do it. It’s OK if you fumble through and are slow, as long as it’s right. D-moms need to realize this: If the blood glucose numbers are correct, trust what the dad is doing.
D-dads don’t shelter their kids, but they do protect them. There’s a difference between hover parenting and being mindful because your child has a chronic disease. If your child wants to go to a sleepover, for example, grab your wife, sit down with the other parents and explain diabetes in a non-scary, forthright way. In doing this, they can be prepared to care for your child.
D-dads need to be advocates. Diabetes advocacy should come before golf, bowling leagues, and softball games. A group of advocates, working together, can make a difference. And we need every d-dad we can get.
A 24/7 Disease
Life changed drastically on those two early spring days. We learned so much so fast and it was overwhelming. Type 1 diabetes is a 24/7 disease so it takes diligence. However, if you do work at it, your child will thrive and live a healthy life. It won’t be without its heartaches and struggles, but there is a whole diabetes community willing to lend support.
We survived this storm and had a fourth child in the midst of it all. You can do it too.
Tim Brand is a father of four children, two with type 1 diabetes, and the author of the Bleeding Finger Blog. A passionate diabetes advocate, he has written for several diabetes and health-related websites and publications. Follow him on Twitter @bleedingfinger and Facebook.