Actual conversation I had recently with a doctor.
“Oh, Mrs. Horn. Is your son’s Type 1 Diabetes under control?”
I sigh when I hear this because I always know the answer is no. He’s not controlled and I am hoping he will have better control once he’s done growing.
So I answer, “No, he’s not because of his growth hormones. Hopefully his blood sugars will calm down once he stops growing,”
She keeps going.
“So, who did he get it from in your family?”
I grit my teeth and politely correct her. Because I can’t just nod and smile on this.
“Type 1 Diabetes is actually an auto-immune disease.”
Sometimes I even quote what the Mayo Clinic defines Type 1 Diabetes as, “a chronic condition in which the pancreas produces little or no insulin. Insulin is a hormone needed to allow sugar (glucose) to enter cells to produce energy. Different factors, including genetics and some viruses, may contribute to type 1 diabetes. Although type 1 diabetes usually appears during childhood or adolescence, it can develop in adults.”
We have Type 2 Diabetes in our family, but that’s not what happened with my son — Type 1 Diabetes isn’t hereditary. It was just bad luck in our case.
And I get sadder, because I have to educate 99% of the people that I talk to about this. Then again, I didn’t know much about Type 1 Diabetes before my son was diagnosed, 2 and a half years ago. I had only met one person with it and of course we knew it as Juvenile Diabetes. There was so much I didn’t know about it. Even though I had gestational (Type 2) with my youngest child and my father has had Type 2 for over 20 years.
So I need to give other people grace, as I didn’t know either.
But the sadder part is, I feel judgement because he’s “not controlled.”
I feel judgement that people think that I’m a bad mother because my son has this disease. I feel judged because he goes high and low at least once to three times a day. I feel judged because I’m overweight and this must be my fault, right?
Well no, it’s not. Type 1 Diabetes is an auto immune disease and doesn’t run in families or is passed down from either my husband or I.
I feel judged if I let my kid have ice cream or a treat — but frankly, I only say no to him about a treat or a sweet if his blood sugar is way too high and I know that adding something like that will shoot his blood sugar even higher. Surprisingly, it’s easier for his body to process ice cream (sugar and fat) than rice or pasta. While I try not to have different rules for my teen than this younger sister and younger brother, there are rules. And while it’s not always fair, I have to do what I think is best for him. Running really high blood sugars will affect him negatively in the future and I have to be the grownup and kill all the fun sometimes. Adulting is just not great sometimes.
But I’m sure I’ll hear this “under control” conversation for years. And my answer will always be the same. I hope that he stabilizes as he gets older. And I understand that people will always think that if he ate better or did something better he’d be okay.
I do believe in eating lower carb for my kid to help his blood sugars be more stable, but then again I can’t take all joy from his life by making him follow a low carb diet when he really doesn’t want to. I can’t ask him to have a salad when his friends are having pizza. Yet at times I do make low carb foods for him and steer him towards better choices. But sometimes he needs to be a kid. I let him have the two slices of pizza. I let him have the sushi. I let him have the Subway hero.
He guesses at the carbs and takes a chance on having the pizza. I can’t tell him never to have ice cream or cake again. He’s already given up so much. I can only hope that like my other two children that he would have sweets in moderation and make healthy choices. He will be on insulin for the rest of his life, he’s got to find a way to live with it. And once he’s a little older, I’m hoping I can get some of my life back too. I am worried way too much and sleep way too little, because I have to help him stay as “in control” as he can be for now. I have to treat his low blood sugars when he’s asleep at night and doesn’t feel his blood sugar plummeting or stay up to keep pushing the insulin button on his insulin pump because I’m a better pancreas than his non-working one.
I still hope one day he’ll be under “control”. Or there will be a cure for Type 1 Diabetes, because that would be even better than “control”.