There I was, standing in the laundry room with my back against the door stuffing cookies in my mouth. Yes, I was hiding from my toddler. Eating a cookie in front of an almost three-year-old without offering him one is not exactly easy. But this was not stress eating or an excuse to take a break from my son. I’m a mom with type 1 diabetes, and in that moment, that cookie was potentially lifesaving.
When I envisioned being a parent, I pictured both the fun and the not so fun. T-ball games and marker drawings on the walls. Snowball battles and black eyes. Chaotic birthday parties and homework. I most certainly did not picture diabetes.
We often hear about parents as caregivers for children with special needs, but in my household, those roles are somewhat reversed. While my kids – who are eleven and seven – rely on me to fix dinner, sign school permission forms, and drive them to soccer practice, I rely on them just as much for delivering juice boxes, carrying extra supplies, grabbing replacement wearable devices, and restocking the fridge with insulin.
Basically, my pancreas is busted. That organ doesn’t make the hormone needed to keep my body’s blood sugar levels in a healthy range. I have to get insulin into my body manually, which I do via an insulin pump. I also must regularly monitor my blood sugar levels to ensure I dosed the correct amount of insulin, which I do with a continuous glucose monitor.
Seemingly simple family outings, such as a neighborhood bike ride or a backyard wiffle ball game, involve preparation, planning, and mitigation. Activity can send my blood sugar into a fast plunge, thus ending the fun early. On numerous occasions, we’ve been in a store browsing longer than anyone wants or sitting in a parked car outside a store, just waiting for my blood sugar to return to acceptable levels so I can drive us to the baseball game, play date, museum outing, or just home.
Unfortunately, low blood sugar levels aren’t the only concern for me or my family. If my blood sugar gets high, so does my irritability. Most of the patience and understanding I possess when my blood sugar is in normal range flies right out the window when I’m high (that has a completely different meaning in the diabetes community, BTW!). I really do try to recognize this and not take it out on my kids, but it’s hard not to be downright grumpy when I have no energy, my brain is foggy, and my head is throbbing.
Add cooking dinner while trying to get two kids to unpack their book bags and start their homework, and I’ll admit the dragon voice will come out. I call it the dragon voice because I feel myself sounding and moving in a way I imagine a dragon does when she summons the energy to create fire deep within her belly and the strength to breathe it toward an intended target. Look, I’m not proud, and I’m not saying it’s okay. I’m just saying that in most cases, diabetes makes daily tasks a million times harder.
For what it’s worth, I do try to tell my family when my blood sugar is low or high so they can, to the extent possible, understand there’s a force multiplier that should be factored into the mix. And when the dragon voice gets a little out of hand, I make a point to apologize.
Diabetes sometimes feels like an invisible disability. Unless you know me personally, or see the lifesaving medical devices I wear to deliver insulin and monitor my blood sugar, I look like many other working professionals, wives, and mothers.
You can’t see it in my kids, either. You can’t look at them and see the added responsibility they bear just for being my children, the extra breaks we build into our days, pharmacy trips, snack runs, finger pricks, bathroom stops, etc. You don’t see the immense patience they have to possess waiting for me for one reason or another, and the resentment they feel when I get to eat treats before breakfast after I’ve told them a hundred times that’s not something they can do. You don’t see the pressure that it puts on all of us.
But, while being a mom with type 1 diabetes comes with challenges, what comes out of having a parent with an invisible disability is the very visible display of positive traits in my sons. Both of my boys are helpful, getting me supplies I need without repeated asking or fussing. They’ve even gotten to the point where they are proactive in many cases; they will bring my insulin bag without asking if they notice I’m too far away from it.
Growing up with a mom with diabetes has also instilled kindness in my children. They are compassionate and respectful. They understand acutely that bodies are all different, that diversity is okay, and that a disability doesn’t have to cut off people from the rest of the world. They understand equity versus equality at a fundamental level: If there are three of us and three pieces of candy, we all don’t get one piece to make it equal. If Mom’s blood sugar is low, she gets three pieces because that’s what she needs to be successful.
Most importantly, there’s a selflessness that comes with having to put your needs aside to focus on and care for someone other than yourself. If I’m being honest, that’s a trait I would have rather tried to instill in my kids without having to manage a life-altering chronic illness, but I’m not sure my efforts would have been nearly as successful as simply being their mom who has diabetes.
And that – raising kind, helpful, and compassionate children – is something I clearly envisioned when I pictured being a parent.
Photography: Jennifer Guild