As parents, we tend to define ourselves by our kids. Our success is only as good as theirs. Add in a chronic illness — type 1 diabetes especially — and we have even more numbers than just our child’s reading level or grades to measure their success against. There’s even more that determines how well we have done.
I have type 1 diabetes, and so does my child. Not only do I know what the numbers on my daughter’s sensor mean, I know how they feel. I end up judging myself for both my blood sugar numbers and hers, and I feel guilty for making her feel a certain way. Because it definitely isn’t my 5-year-old’s fault that she’s high.
There are a lot of hard things about having a child with T1D. There are a lot of hard things about being a mom who has T1D. Taken together, it means we have a lot of hard things to deal with. There is the guilt around having knowingly passed on my DNA to her. The times my low feels so much harder because I can’t just give her my juice box while her pod is screaming and she’s high and thirsty. The times I accidentally put her pod on myself and vice versa in the haste of a quick site change.
But outside of the micro moments, there are macro decisions that leave a larger footprint. As a parent who happens to have the same chronic illness as her child, I want to be able to relate and deeply understand this path she’s been set on. What’s the point of having the same condition as her otherwise? Why else did I live the majority of my life with type 1 diabetes, if not so I could be the mother my daughter needs? So that I could teach her how to handle the nuances that come with living with type 1 diabetes, and so that I would understand that the emotional aspect of living with this disease will always be more important than a lower A1C.
The hardest part for me is understanding how she physically feels, while simultaneously giving her space to have her own experience. Acknowledging how our paths are both the same and different is something I have to make a conscious decision to do.
It’s a double-edged sword, because my life experiences with T1D have inevitably shaped how I parent and handle T1D scenarios. But I didn’t grow up with type 1 role models accomplishing whatever feats their hearts found worth pursuing. I didn’t grow up with parents with T1D. (Did I mention my husband also has T1D?) I didn’t grow up with a babysitter that also goes low. I didn’t grow up with friends wearing the same robot parts as me. Heck, I didn’t grow up with robot parts at all. Disconnecting my experiences and struggles from hers is so difficult, but also so important.
Sometimes, I have to remind myself that children are sponges. No matter what I say, what I do is what sticks with her. My husband and I have always been really good about not associating the number on her glucose meter with what she is allowed to eat. Ice cream at 250! Sure, why not? The number only helps us determine how much insulin to give or not give. The decision to make sure she doesn’t feel limited by a number is reflective of my own experience having felt a lack of freedom around food. But, she sees what I do. I recently realized that despite my being so good about not depriving her of food when she’s high, she sees and hears all the times I wait until my insulin kicks in. Just last week, she told me that she knows she can’t eat when she’s high, even though that’s something we have never told her.
As everyone that lives with T1D does, we will figure it out. We still make mistakes. We also live life, travel the world together (pre-COVID), go for family hikes and bike rides, and argue with our kids about bedtimes and needing to wear pants before leaving the house. As a person with type 1 diabetes myself, I am a little less reactive to the sensor alarms, knowing the number is going to change in five minutes and doesn’t mean she isn’t okay in the larger picture. As hard as it is having lived the parts of her life that will be more difficult, it is also easier knowing that she can choose whatever adventure she wants her life to be. Just like I did.
In the words of one of my good friends, parenting is the hardest thing we have ever done, and parenting is the best thing we have ever done. And type 1 diabetes doesn’t change that.
Disclaimer: The experiences and suggestions recounted in these articles are not intended as medical advice, and they are not necessarily the “typical” experiences of families with a child who has type 1 diabetes. These situations are unique to the families depicted. Families should check with their healthcare professionals regarding the treatment of type 1 diabetes and the frequency of blood glucose monitoring.