Parent of a Type One Diabetic Speaking out Against Stigma

“Look there is diabetes on a plate.”
“You are so sweet, you will give me diabetes.”
“Who ordered the diabetes?”

Diabetes is a very serious medical condition that comes in two types. Type one and type 2. Type one has no known cause. It is an autoimmune disorder where the T cells attack the insulin-producing beta cells. Type 2 has several factors including genetics, lifestyle, and environment. It is usually later onset but not all the time. It causes the body to resist insulin so the pancreas has to work overtime to make more insulin.

What A experiences

As many of you know, one of my children is a type one diabetic. He came to us when he was 5. He is 9 now. He is the most badass kid I know.

Type one diabetes, of course, affects the diabetic but also effects the people taking care of them.
Let’s call my son A. A wears a device called a Dexcom. It measures his blood sugar every 5 minutes. It pushes the number to my phone, my husband’s phone and his phone. He also has an insulin pump. It calculates insulin for him and suspends it when his glucose goes too low. This gives him some normalcy and some freedom but it was not always like that. He operates his own pump now and knows when to have a snack when his glucose goes too low. Most adults I know will not do that.

Before the Dexcom, he needed to perform a blood glucose test at least 6 times a day. He had at least 6 injections a day. When his sugar is high, he had to test his ketones to make sure they were not too high. Ketones are eliminated by insulin. If he does not produce insulin, we have to calculate the insulin to administer to get rid of the ketones.

What would happen if he had ketones in his blood and we didn’t eliminate them at home? He is in danger of having a very fatal complication called Diabetic Ketoacidosis. It is when there is an abundance of ketones in his blood and it turns acidic. This is life-threatening and has been near death 4 times.

What My Husband and I experience

A came into our life when he was 5. He is really my husbands half brother but he is treated like ours. As soon as we got him, we had to bring him to the hospital to get a baseline on how to treat the disease appropriately to keep him healthy. We were scared to death because he had been near death 3 times before he came to us. 
We send him to school, he is in cub scouts and other things. We constantly worry. 
Did we give him the correct amount of insulin?
Is the Dexcom sensor going to fail?
Is his insulin pump going to occlude?
Is this going to be the night we sleep through a Dexcom alarm?
Did we over-treat his low?
Is this the time we have to give him an emergency glucose injection?
His sugar is high, is he going to go into DKA today?
Is he going to die in his sleep from hypoglycemia?
How much sleep am I going to get tonight? I have over children to care for and I do not want to neglect them.

When Dexcom goes off, we need to respond. It does not matter if it is 2 in the morning. I never get mad at A but it does affect the rest of my day when I do not get enough sleep.

These questions go through my head all day every day. If there is no data on his Dexcom, it gets exponentially worse. I do not want to sound like a warrior parent but I constantly worry because If I make a mistake, it could cost him his life.

After going over all this, how can someone joke about this life-threatening condition? You don’t joke about cancer, do you?

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