As a mama, I find myself counting the hours of potential rest I’m going to get before Callie gets up in the morning or calculating the amount of coffee I’m going to need to intake before I can function at an optimal level to survive 3 hours of archery practice in the blazing Texas sun. For the record, it’s three cups.
But, as a mama with Type One Diabetes, there is also a complicated formula of insulin dosing, carb counting, temp targets, and rest that will actually determine how well I’m going to be able to show up as a parent the next day.
I was diagnosed with Type One Diabetes when I was three years old. That means, I have to take a drug called insulin daily to stay alive because my body lost the ability to make it on its own. I’ve been in and out of the hospital growing up and juggle my fair share of doctor’s appointments every year. Diabetes is a disease that you have to manage every minute of every day by taking insulin injections/dosing with a pump and counting carbohydrates. Hormones, stress, weather, exercise, your age, other health issues all play a part in how your diabetes shows up each day. The easiest way I can explain it is trying to ride a bicycle on a tight rope. Except the tight rope is on fire. And the bike is on fire. And you are on fire.
And it at times it can definitely feel like an overwhelming burden when I’m trying to show up as a good mom.
Here are three struggles I experience while parenting with diabetes–plus how I’m learning to cope with these unique challenges.
This is not your ordinary mom guilt. I don’t just feel guilty that I have to split my time between working and spending time with Callie or feeling guilty that I’m not cutting her sandwiches into cute animals neatly placed into a color coordinated bento box.
I feel guilty because we had to teach her how to call 911 if “Mommy passed out” when she was 4 years old. I had to ask my 4 year old to take on the responsibility of saving my life.
I feel guilty because there are days where I’m too tired from a night of blood sugar swings to take her to the mall like I promised.
I feel guilty because of the burden placed on her little shoulders sometimes. Having to stand on her tip toes to get my gummy bears and sitting down on the floor with me while I treat. Talking to Daddy on speaker phone to reassure him that Mama’s ok.
I feel guilty because there are large financial considerations to diabetes management and I hate the fact that we have to make decisions between doing an extra vacation that year or paying for my insulin.
I feel guilty that the disease has stolen me away during countless moments of her childhood.
The guilt can be crushing at times.
Fear She Will Get the Disease Too
I live in a constant state of hyper vigilance when it comes to her showing early signs of diabetes. Diabetes can be hereditary (especially Type One) and I am constantly aware of how much water she’s drinking, how often she’s using the restroom, and what her energy levels are each day.
She doesn’t know that my heart broke into a million pieces when she asked me one day “Mama, what if I get diabetes too?” And although I recovered quickly enough to tell her that she was strong, brave, and she would have the best person in the world to help her (um, me 😉), I didn’t tell her the night she was born, I whispered a silent prayer up to the heavens.
“Please. Not her too.”
Explaining my diabetes to Callie, meant being vulnerable in a way that I never have been before—teaching her that sometimes Mama might need her help, sometimes Mama has high and low blood sugars, and that I need a drug called insulin to survive. Explaining to her that her Mama, who she literally thinks the world of, isn’t Wonder Woman.
I find myself at times trying to protect her from the drudgery of the disease. We make runs to the pharmacy to pick up my insulin, she understands that we have to have certain snacks in the house for my lows, and she knows that I might need to take a break when we’re doing an activity to check my blood glucose levels. It’s a delicate balance–how much can I truly let her see? How much insight into how scary this disease can be do I give her?
How Do I Cope?
Definitely not perfectly. In fact, this is something I think I’ll probably be working on for the rest of my life. But it’s reminding myself of a few things….
I do believe she is more empathetic and compassionate because of my diabetes.
She’s more in tuned with other’s feelings and much more inclusive to people that are living with chronic illness.
She’s becoming a little advocate in her own right—quickly calling out TV shows that invariably misstate that the character with diabetes “needs insulin” because they are having a low blood sugar. She’s quick to correct when people make comments about what people with diabetes can or can’t do.
She also has an extra ordinary opportunity to witness her Mama live her life with this disease. With grace, perseverance, tenacity, and a lot of laughter. She gets to see me hit my goals, live without limits, and chase down big audacious goals for myself.
All with a leopard print CGM sticker on my arm and my pump on my waistband.
She gets to see, in real time, her mama push through hard days, acknowledge setbacks, adapt and adjust plans, and be flexible.
Callie gets to see her mama navigating, balancing, managing, and fighting this disease every day……
With the understanding that it’s so I can get as many years as I can with her.
And that’s a pretty powerful thing.