Month: July 2009

When your arm got twisted behind your back as a kid you were allowed to yell, “Uncle,” when you’d had enough and the offender would just let go. Well, Type 1 Diabetes, I’ve had enough and I’m yelling, “Uncle!” Won’t you please let go?

We are just shy of two years of living with this awful disease. My son has endured over 7,200 blood glucose checks. Look at your own hands. Can you imagine pricking them once let alone thousands of times. Little boy hands are for digging in the dirt, and for learning to swim. Little boy hands are for petting really soft kittens, or for a home for a wayward ladybug. Little boy hands are for hugging their mama’s tight, or tickling their little sister’s toes. Little boy hands are not for finger pricks. It’s just not the way it’s supposed to be.

In these two years my son has waited to have the carbs counted on over 2,000 meals not including snacks. Little boys are not supposed to wait for their food. They are hungry, they are growing, they are busy little beings. Little boys don’t have time to wait for their mama to count every carb that is on each and every plate of food just before they can take a bite. That is most definitely not the way it is supposed to happen.

In these past two years my son’s sugar has ranged from as high as 1,000 when he was diagnosed to as low as 31. This little boy has been shaky from his number being to low. He has slurred his words and spilled his drink from a number that was too low. He has gotten ketones and was made to vomit from a number that went dangerously high. This little boy has gotten angry, sad, belligerent, upset, and cranky because of numbers that have been too high or too low. He has missed out on playing for treating lows. He has missed out sleeping for his body dealing with highs. Now I know for sure, none of this stuff is supposed to be happening.

Diabetes is not supposed to happen to kids. It is an awful disease that takes too much out of you, more than any kid should have to give. My little boy has been living with this for two years. I think that’s long enough. It’s time to yell “Uncle!” from the rooftops. We have had enough and we want it to STOP! If only someone that could make it stop were listening.

People living with Type 1 diabetes understand that the term roller coaster is not just a high speed ride at an amusement park, it also refers to the unexpected and unpredictable ups and downs of blood sugar readings.

After being the caregiver of a child with Type 1 diabetes I fully understand that blood glucose numbers are just that, a number in a moment in time to give information. We don’t classify numbers as good or bad, they are just numbers that tell us one of three things: need insulin, need sugar or good to go.

While the numbers vary from time to time, most have an explanation. Above range and we can usually figure out that there was a mistake carb counting or extra carbs were eaten. Below range and we can usually determine that there was more than expected activity, or less carbs were eaten that were counted upon and too much insulin was given. Regardless, most of the numbers can be explained in one way or another.

You make changes to insulin basal and bolus rates when you see a pattern at similar times of day. For instance, if my son’s blood glucose number goes low 3 hours after breakfast everyday then I know from our experience that that is a basal issue. These are the reasons I still keep a detailed log book even 2 years into this. I can pinpoint patterns and make changes accordingly.

Then there are the roller coaster days. They seemingly have no pattern and they blindside you. It’s like someone came out of a dark alley and hit you in the knee caps with a baseball bat. Out of the blue! Completely unexpected numbers one way or the other, and then not two hours later, more completely unexpected numbers this way or that way. These are the days and nights that take the most out of me as a caregiver of a child with Type 1 diabetes.

Not because the numbers are doing anything to me, but because of what they are doing to my son. One minute he is shaky from such an out of the blue low number, to the next hour when he is angry and frustrated from an unrealistically high number from the amount of sugar given for the low. It is like his little body is a ping pong ball. Being hit back and forth between high and low numbers. Patiently, and not so patiently, waiting for this game to end and his numbers settle back into some semblance of a pattern. He just wants to be a six year old boy, he never asked to be part of this game.

In two years I have no answer as to why these roller coaster days happen. They don’t happen often (thank goodness), but when they do they remind you how awful this disease is. How truly unpredictable blood glucose numbers can be, and how difficult it is for me to be acting as a pancreas outside of my son’s little body.

Roller coaster days remind you that no matter how on top of and in control of things you think you are, that you really aren’t, you are just along for the ride. My advice…hold on tight.

When I was a Special Education teacher I was taught discuss the child first and the disability second. No labeling was what I got out of that. Now that I have a child with diabetes, I tend to follow the same wave of thinking. While Type 1 diabetes is not a disability, it is an autoimmune disease, I still chose to talk about my son first and his disease second. No labeling.

When I talk about my son to people that know him certain images are conjured up in their mind’s eye. These images are as follows:

• very funny
• gorgeous face
• intelligent
• well spoken
• polite
• athletic
• beautiful hair both in color and length
• generous
• caring big brother
• creative
• silly
• sometimes too heavy on the potty humor (ala 6 year old boy)
• good eater
• good conversationalist

These are just a few of the attributes that make up my son. There are many more, too many to list, but I think you get the picture from this list. He is a really good boy, on many different levels.

Now, when you hear the word diabetic on the news or an advertisement there are certain images that are tossed around in your mind’s eye. These images are as follows:

• can’t eat sugar
• overweight
• self-imposed
• random glucose checks
• blindness
• kidney failure
• nerve damage
• must watch what they eat
• elderly
• runs in families
• doesn’t exercise

You may be thinking to yourself that this list is a little harsh, but take a moment next time Wilford Brimley is on the television talking about ‘diabeetus’ supplies. What images are conjured up in your mind? I can guarantee that the first list of my son’s attributes are no where in site. While the entire second list may not enter your mind either, there is definitely more of the second list present, whereas my son’s list isn’t even in the same hemisphere.

I know there are moms of children with Type 1 diabetes that call their children diabetics. That is their choice. I choose to call my son by his given name, and then add in that he has Type 1 diabetes if the situation calls for it.

I choose not to call my son a diabetic for his sake also. I don’t want him to associate himself with the second list either. Yes, complications may be in his far future, and we do test his sugar many, many times a day, but he is so much more. I want him to tell people he is a good swimmer, or a good story teller, or even a bad football player, but I never want him to tell people he is a diabetic. Diabetes does not describe, define, or do justice to any part of my son. To take away my son’s name and to call him a diabetic  just seems like a injustice to my son.

My son is not and will never be defined by his diabetes. He is his own person, a fantastic little boy, who happens to have Type 1 diabetes.