I can picture him now — his eyes were bloodshot from chronic sleep deprivation, his hands shaky from anxiety; he talked like someone stuck in a losing battle from which there was no escape; he was angry, scared and unsettled and had no idea what to do next. He was a parent of a young child with type 1 diabetes. I met with him (and his daughter) years ago because I was a therapist who also happened to have type 1 diabetes. We weren’t meeting in any official capacity — it was arranged through a family friend who knew this man and his daughter were going through an incredibly tough transition and figured I would be the person to talk to, given my combination of personal and professional experience.
I have seen that combination of fear, helplessness and exhaustion in parents several times since, and every time I see it, my heart goes out to them. Being a parent of a child with type 1 diabetes is not easy! I say this as someone who hasn’t had the experience of being a parent, but as someone who has lived with type 1 diabetes for over 23 years. So I don’t presume to know what it must feel like to parent a child with this disease, but I hope that my combination of experiences might mean I have some meaningful advice to give to those of you who are in this most stressful situation.
You have diabetes, too
A friend of mine raising a five-year-old with type 1 once said that she and her husband felt like they had “type 3” diabetes. I thought that was a great description. She explained that in many ways, it really felt like she might as well have diabetes, since the management of the disease fell so squarely on her shoulders. After all, there is only so much a five-year-old can take on! Managing diabetes takes a lot of calculating and analyzing that is simply too much for someone that age to take on all by himself. And so it becomes a shared disease. Furthermore, while the lion’s share of management falls on the parents’ shoulders at that age, it is the child who has to carry out the behaviors, and that is outside of the parents’ direct control. What a potentially crazy-making situation!
What I told my friend, and what I would say to any parent out there struggling right now, is this: It will never be perfect. And that’s OK. What I mean is that diabetes is not about getting everything perfect. I’ve had it for 23 years, I’m in good control, and I have not yet faced complications. The vast majority of the time, my A1Cs have been in the tight control range. But that doesn’t mean every day is perfect. It’s impossible to avoid the occasional “bad number day,” no matter how hard you try. You can do everything exactly right and still end up 257 at the end of the day — and you may never know why. It might have been a miscalculation in the carb counting; it might have been insulin that was losing potency; it might have been caused by unnoticed stress (which pushes blood sugar up thanks to the release of adrenaline and cortisol, both of which promote higher blood sugars); or your child’s system might have been fighting off a bug that would go unnoticed in someone without diabetes.
When that happens, you MUST remember two things. First, you must remember this doesn’t make you a bad caretaker. Repeat that after me several times — you are not a bad caretaker because of a high blood sugar. If you told your five-year-old to eat a large bowl of ice cream without testing and without taking any insulin because you were “too tired to bother,” then you’re a bad caretaker. But I doubt that individual would be tracking down a blog about type 1 diabetes. Second, while the complications list of diabetes is scary, is real, and should be taken seriously, those complications are the result of chronic high blood sugars, not occasional spikes. Of course you want to aim for the ideal range whenever possible, but that occasional high blood sugar is NOT dooming your child to lose a limb!
Care for the present, prepare them for the future
You know the old storyline of the baby bird — when it’s time to fly, the parent pushes him out of the nest and he flies or falls. Well, you’re going to be faced with this kind of decision at some point with your child. Here’s the thing — when your child is very young, you need to direct diabetes management. It’s just how it is. But as she grows up, she needs to take it on for herself. By the time children reach adolescence, it is absolutely imperative that they feel a sense of ownership and are the primary drivers in their own care. Because if management is still something forced on them by their parents at that point, diabetes management can easily become one of the things to rebel against, and the potential consequences of that are disastrous.
This means that you need to find opportunities to hand over control to your child along the way. Doing this bit-by-bit is easier and more effective than doing it all at once. But it’s still not easy. Because each time you hand off part of the management chore, you’ve got know that initially, your child won’t do it as well as you do. That means that you’ll notice the numbers get a little worse for a while as he learns the new skill, and you’ve got to avoid that temptation to jump back and take over. Yes, in the short term you’ll get better numbers, but remember, this disease is (unfortunately) a lifetime disease. Your child will have it long after you’re not calling the shots anymore. It is much better that she experience a bit of less-than-stellar numbers now, with you available to coach and advise, than for her to reach adulthood unable to manage this disease herself.
I won’t presume to understand the torment this step represents. And I’m not even going to offer advice, except to suggest that you find other parents in the same situation and support one another. There are support groups out there that you can join. If you can’t find one, form one. We live in an online world and others are out there. You can also find a way to talk to other parents who have been through this. My own mother could probably give some great advice right here! She did a great job for me, I can tell you that!
As an adult living with type 1 diabetes, I offer my heartfelt thanks and gratitude to EVERY parent out there helping their child face this disease. You are undertaking a very difficult job, and each and every one of you deserves your own mansion in the Bahamas! You can do this!
Want to learn more about caring for a child with diabetes? Read “The Type 1 Diabetes Diagnosis,” “Helping Young Children Succeed With Diabetes Care,” and “School Planning 101 — Diabetes at School.”