Category: Uncategorized

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.

A great deal of taking care of child with Type 1 diabetes is following your intuition. Your intuition gets honed when you are familiar with the child’s personality quirks and idiosyncrasies.

Now, getting to know my son was a non issue for me. We were inseparable until I sent him to preschool when he was four. The three of us, my son, my daughter and myself, we are three peas on a pod. Of course, their dad is always welcome in our pod, but most days it is just the three of us while daddy is at work.

So recognizing when my son was a little off when his blood sugar was too high or too low came rather easy for me. I would be able to tell in an instant when his sugar was not level because he would either be whiny or mean, two traits of his personality that are rarely seen.

This skill came in handy when it came to protecting my feelings over the last two years. I will never forget (no matter how hard I try) the Valentine’s Day that he came out of preschool with the angriest look I had ever seen on his beautiful face. He reluctantly walked behind me to the truck and when I gently broached the subject and asked how his day was, he replied, “I hate you.”

I knew in an instant something wasn’t right. This was not my little boy. I quickly grabbed his blood glucose meter and tested his angry little finger, and it registered over 500. A little too many carbs at his Valentine’s Day party and not enough insulin to go with them.

While getting to know my son is not an issue for me, it poses a bit of a concern when we are talking about a new school year. New school year means all new people that do not know my son. Now I know every mother says this, but my little boy is awesome. He is sweet, gentle, kind, respectful, friendly and loving…most days. He creates and builds from any piece of cardboard he can find. He has his six year old moments when he gets a little kooky like other boys, and then there are the high sugar and low sugar moments. Those are the moments I worry about when it comes to school.

Any teacher that my son gets will have to get to know him very quickly. We can’t wait for November for his teacher figure out that he normally does not cry unless there is a really good reason. We need her (or him) to know that my son has an even disposition and only cries when someone really hurts him, or he his blood sugar is low.

We need his teacher to know that my son is normally even keeled. We can’t wait until October and 10 trips to the Principal’s office for the teacher to realize my son is a gentle boy and aggression is usually attributed to high blood sugars.

Any teacher that my son gets is going to have to be a quick study…on his personality. I know this is a tremendous task for any teacher to fulfill, but he is my son, and I expect nothing less. I only hope his teacher feels the same way.