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My son has been living with Type 1 diabetes for almost 2 and 1/2 years. I think he is doing an exceptional job dealing with this relentless disease day in and day out. He rarely complains, he takes all his finger checks and site changes in stride, and he even takes on the role of diabetes educator when it comes to his care at school and away from home. He knows a great deal about what Type 1 diabetes is, how to best care for his needs, and what makes him feel at his best. He is a hero in my eyes.

He never makes excuses for anything when it comes to diabetes. He does not miss school because he has Type 1. He does not miss gym class because he has Type 1. He does not miss any obligations because of diabetes. There are times, however, when the Mama Bear in me comes out in full force and I must step in and demand that we make an exception because of diabetes.

Every night I check my son’s sugar while he sleeps. His sugar usually gets checked around midnight and 3:00 am, just to ensure that his numbers are staying steady, and if not some intervention can take place before it becomes a serious problem. These nightly checks usually have no impact on my son’s sleep. He sleeps through finger checks as  well as site changes. He is a real trooper.

It is the nights where his sleep is severely altered that I must step in give my son the opportunity to acknowledge that sometimes diabetes does affect our day to day. Some nights when I check my son’s sugar it is too low. In order to get the number back in range I have to feed him some type of sugar. That can be anything from a glucose drink (our favorite) to a juice box, or yogurt drink, or a small piece of candy. One time a night of this is disruptive enough, but sometimes for whatever reason, my son may dip low 2 or 3 times in one night. So that is 2 or 3 times when I am giving him juice to drink, or a snack to eat instead of him counting sheep like most kids.

Sometimes when my son dips low he gets very very hungry. So along with getting glucose checks and sugar in the middle of the night he also needs a snack.

Do you have the picture in your head yet?

2:30am…Mama sneaks in to the bedroom, puts the tiny flash light in her mouth, and checks the sugar. Meter reads 62. Mama runs to get the glucose drink, places the drink in the sleeping boy’s mouth. He slowly starts to wake up because he is starving from the 62. He drinks the drink, and then realizes he is hungry. We both go into the kitchen for the boy to eat salami and cheese for a 2:30am snack. Definitely not like most homes.

This is where Mama steps in. Yes, we have no excuses when it comes to diabetes, but this is serious. A six year old boy cannot go to school and function properly on such terribly interrupted sleep. He needs sleep to learn, grow and stay healthy. Diabetes doesn’t understand that, but his Mama does. That is when we shut off the wake up alarm and let the boy sleep in until he wakes up on his own, rested and ready for the day.

We have no excuses when it comes to diabetes, but some days enough is enough.

It has been almost 2 and 1/2 years since the uninvited guest of Type 1 diabetes came into our home. It came, unpacked, and essentially invaded every nook and cranny of our home. It is rude, obnoxious, pushy, insensitive, and intrusive. The worse kind of guest ever, and I have to say in these 2 and 1/2 years it has not gotten any easier to deal with this guest.

Not in the ‘woe is me’ kind of way. We are past that. Sure I mourn for my son that he has to deal with Type 1 diabetes every day of his little life, but we do not pity ourselves for dealing with it, we just deal. The part that doesn’t get any easier is the day to day dealings that no matter how much you wish them away will never be gone.

Every day my son has to check his sugar over 10 times a day. In 2 and 1/2 years that is over 9,000 finger pricks. 9,000! For the first 8 months of having Type 1 diabetes my son had to have between 4 and 10 shots of insulin a day depending on the foods he ate and the range of his glucose numbers. After the shots, we switched to an insulin pump, so for almost 2 years we have changed his insulin pump site every 2 days. Every 2 days for almost 2 years we changed his site which works out to be about 365 site changes. 365!

Dealing with Type 1 diabetes doesn’t get any easier because it is relentless in it’s attempt to cause as much unrest as possible. Not a finger check and blood glucose number goes by without me thinking of which plan of action is necessary. Some checks nothing may need to be done, but I still have to quickly evaluate that number and determine if it is in range. It is constant thinking, evaluating, adjusting and checking.

It doesn’t get any easier because Type 1 diabetes is different every day. If my son eats the same breakfast every day for 7 days there is a good bet that his numbers will still be different after each meal because of outside sources such as weather, illness, growth, stress, equipment malfunction or whatever.

It is like living in the movie Groundhog Day with Bill Murray. We wake up we deal with Type 1 diabetes. It never goes away and it never gives us a break. We cannot go an entire day without testing my son’s sugar. We cannot go an entire day without counting carbs or giving insulin. He would die if we did that. Literally.

That is why living with Type 1 diabetes doesn’t get any easier. There is no time to take a break. There is no reprieve from the glucose checks, the carb counting, the dosing of insulin. It gets worse over time because you want to forget about it for a while and you just can’t. Diabetes vacations with us, celebrates holidays with us, gets one year older with us on birthdays, joins us when we are sick, and follows us to school. Too bad Type 1 diabetes isn’t good luck, we would all love to have such good luck following us around all the time.

I know many people that have lived successfully with Type 1 diabetes for over 37 years, and I know that my son lives a very full life with it too. But I do also know that my son would give anything to just eat a meal without checking his blood glucose first or dosing insulin. Or go out to gym class without having an extra snack to avoid going too low. Or sleep through the night without any finger checks. Or go to school without worrying who will help him if he goes low and cannot take care of it himself.

Diabetes never takes a break, so therefore neither can he.

Hello, I am a mom of a six year old with Type 1 diabetes and I allow him to drink diet soda. That is how I feel I should introduce myself whenever I bring up the subject of diet soda with other moms. For the record, it is our choice for my son to drink diet soda. He drinks water, milk, hot chocolate, low carb fruit drinks, and some diet soda. That being said, if he did not have Type 1 diabetes he would not be drinking any soda at all. We were a lemonade family before diagnosis, and sugar free lemonade isn’t cutting it for him anymore.

Now after that disclaimer, onto the point of this particular post. When we go out to dinner at a restaurant my son orders his own food. He is quite adept at it for someone who only goes out about once a month. He orders his meal then he always says, “And a diet soda for me please.” Plain and simple. The boy orders what he wants. Now getting what he wants seems to be the issue for many servers out there.

Once my son’s drink is placed in front of him I quickly take a sip. I can tell the difference between diet and regular soda so I am the taste tester. Most times it is correct, he is given a diet soda. It’s the times when it has not been correct that make me nervous. A 12 ounce cup of regular Coke has 39.9 carbs in it. If my son unknowingly drank that soda without giving himself any insulin that soda would raise his blood sugar to over 500. A normal blood sugar is between 80 and 120. Something as simple as the wrong soda can raise my son’s blood glucose to dangerously high levels which could lead to vomiting, coma or death. Seriously. I’m not kidding.

Now some people say that he should tell the servers when he orders that he has Type 1 diabetes and that he absolutely must have a diet soda. We have taken that route yet. I allow my son to order and if the wrong soda is placed in front of him I simply tell the server that he ordered a diet soda and to please get him a new one. Sometimes my son will tell the server, “I have Type 1 diabetes and I drink diet soda,” but if he does do that then that is his choice.

I choose not to tell the server because in my experience it doesn’t help. They have no idea what Type 1 diabetes is and some will even argue with me that there are no carbs in regular soda (I’m not kidding, someone actually told me that). If I am out to dinner with my family I want to enjoy the meal, their company and not have to spend 15 minutes of my time arguing my choice of drink for my six year old son.

Bottom line, there are enough medical conditions out there that require special exemptions at meals. Servers need to do their job and do it well. Sometimes giving the wrong soda may not be a matter of taste, it may actually be the difference between life or death.