My husband Joe was irked at someone the other day because they said to him: “at least Joey doesn’t have cancer.” This statement might go down as the #1 worst thing, (and most often said) that you can say to a parent of a child with type 1 diabetes.
We know that when someone says this, they mean no harm, in fact, just the opposite. In a very strange way they are saying, “well, at least he doesn’t have the chance of dying with type 1, like kids with cancer do.” We are not strangers to cancer, and how horrific it can be. In fact, Joe’s dad died of bone cancer, in 1977. And Joe’s sister had breast cancer, which PTL, she made a full recovery from.
This is what we want everyone to understand about our child’s disease. And I am not comparing type 1 to cancer or any other disease, in any way shape or form. And I’m not sugar-coating.
The fact is that kids do die from type 1. JDRF just released a study that shows that 1 out of 20 kids will die from type 1 diabetes. Some people were outraged that JDRF put this number out there. Other’s were relieved, because although no one wants to see the number, it shows that it’s a scary disease that we are dealing with, and people need to realize it. Kids die at onset from DKA, (when the body cannot use sugar (glucose) as a fuel source because there is no insulin or not enough insulin. Fat is used for fuel instead. Byproducts of fat breakdown, called ketones, build up in the body) they die in their sleep from nocturnal low blood sugar. They die from complications of type 1, like kidney failure, stroke, high blood pressure, heart failure. Yes, even kids die from these complications.
Parents of kids with type 1 diabetes never rest, or sleep, or stop worrying about their child. Even when the kids go off to college, which is usually a joyful time for parents, it’s a stressful endeavor for a parent of a child with type 1 diabetes. Who’s going to be there to make sure they check their blood sugar at night? What if they drink too much, pass out and don’t wake up. I know that all parents might worry about their kids going off to college, but they don’t have to worry about them going to sleep and not waking up due to low blood sugar.
What people don’t understand is when they say things like “at least it’s not cancer” they are undermining our very complicated life with type 1 diabetes. It’s no piece of cake, believe me.
Here are a few things that parents of kids with type 1 worry about:
- DIB Syndrome: (Dead in Bed) This happens when the blood sugar falls to a level of coma, and then death. This happens all too often.
- High blood sugar: causes DKA, stroke, seizures.
- Low blood sugar: causes seizures, permanent brain damage. Also causes liver to dump stored insulin.
- Common cold or flu: vomiting, diarrhea, cause dehydration and Ketones from not being able to eat, therefore, no insulin, DKA. A lot of kids end up in hospital from common cold or flu.
- Dehydration: kids with type 1 get dehydrated much faster than kids without. Leads to hospital visit.
- Playing sports: causes adrenaline highs, which effect blood sugars. Exercise can also lead to low blood sugar.
- Playing at a friend’s house: Trampoline, forget it. Two jumps and low blood sugar all day long.
- Going to a friend’s house: who will monitor? Who will recognize a high or low blood sugar?
- School: Who will administer Glucagon if Joey passes out from a low blood sugar?
- Insulin dose: Will we make the right decision on dosing him? One wrong move with the amount of insulin we give him, can kill him.
- Sleepovers: Just don’t go there. I set my alarm for 12 midnight, and 2:00 am to check blood sugar.
- Other autoimmune diseases: once a child has an autoimmune disease like type 1, they are at a higher risk of developing other autoimmune diseases.
- Other kids in family testing positive for type 1. There are a lot of multiples in families, like ours with Joey and Cooper.
- Complications: heart disease, kidney disease, stroke, high blood pressure, blindness, nervous system disease, amputation.
This was a hard topic for me to write about, because it’s a sensitive subject. And again, I am not in any way undermining the horrible, horrible toll that cancer takes on the child, and family. Our heart and prayers go out to all families that have to endure the pain and heartache, and worry that goes along with having a sick child. And while most don’t consider type 1 diabetes as a “sickness,” it’s a disease that stands alone, so please don’t compare our child’s disease to cancer or any other disease.
Another hard topic to talk about is the guilt that the parents feel when their children die from type 1 diabetes. We blame ourselves a lot of time. ‘If only I would have checked him/her more during the night, or “why didn’t I recognize the symptoms?”
We don’t have a cure, but we have hope, and that hope is what gets us through every day.
Insulin isn’t a cure, it’s life support.