Month: September 2011

In a world where there seem to be so many new cases of allergies, I am finding that many people I meet indeed do have a child with allergies. Many of these people are passionate about keeping their children safe, and more specifically safe at school. I listen to how class parties shouldn’t have snacks so their kids don’t feel left out, or kids shouldn’t be allowed to celebrate birthday’s with a cupcake but rather a pencil for every kid in the class. But what always stands out to me in these types of conversations is that the parent usually ends each statement with, “because my kid could die.”

We have been living with Type 1 diabetes for over 4 years. I have explained this disease to numerous teachers, classroom aides, Principals, Vice Principals, class mothers, and friends’ mothers. Really, almost too many people to count as I always feel I am on a crusade of educating everyone about Type 1 diabetes. But until very recently I never added the, “because my kid could die,” statement to my conversations.

But that is very much the truth.

I don’t want my son’s sugar to plummet while he is sleeping, “because my kid could die.”

I don’t want my son’s sugar to go unchecked and go to high, “because my kid could die.”

I don’t want my son’s sugar to drop so low when he is high up on the jungle gym as he could fall, hit his head, “because my kid could die.”

I am not sure why this statement hadn’t really passed my lips in the four years since diagnosis. Until recently.

Maybe I am taking some lead from the mom’s of kids with allergies, knowing that the world listens a little better when you add in that a mistake may make a child die. Maybe I am tired of living with this disease 24 hours a day 7 days a week and people still aren’t getting how serious this hidden disease really is. Maybe I want people to understand that the reason I wake up at night, sometimes several times a night, over the course of four years is because I do not want my child to die.

Maybe I am just coming to terms with the fact that my child, my heart and soul, my absolute reason for living, could indeed die from this disgusting disease at any given moment.

I make a flippant remark the other day to a friend when we were talking about ‘my’ life. “You know it’s a good day in our house when everyone wakes up alive.” It came out faster than I could stop it. As my mom used to say, what’s on my lung comes off my tongue, and this was the case. Although what I said was not insulting anyone it did set ME back a few steps.

In my world, yes, there are fights about school and even with the school. Arguments about cleaning up or lack thereof. Dissent when it comes to bed time. But all in all, it’s a good day in our house when everyone wakes up alive.

 

Another school year. This is our FIFTH school year starting with Type 1 diabetes. And let me tell you, it DOES NOT get any easier. Sure when my son was diagnosed just 1 month before starting preschool I had a different set of fears than I do now that he is starting 3rd grade, but the fears are still as strong and very real.

I fear the obvious.

That some adult will drop the ball on helping my son care for his diabetes and his number will go too low and have a seizure. Or that he will go low on the way to the bathroom and he will pass out and it will be a while before someone even notices that he is not where he is supposed to be. Or that he will go low on the bus to or from school and no one will notice that he is passed out until they get to their destination.

That’s not all.

I fear that he will have an uncovered snack or pump failure that no one notices and his number will go sky high and he will get ketones and start on his way to DKA (google it). Or that his number will be marginally high and he will not be able to think clearly during a test or quiz.

Even more.

I fear that the kids that used to ignore my son’s diabetes will now decide that having diabetes is reason enough to be picked on, ostracized, and bullied. Or that my son will start to think that he is indeed different and begins a pattern of resentment and hatred for something that he cannot get rid of. I fear that my son will get tired of checking his sugar before meals and snacks at school and will rebel against the necessary means to keep him alive.

And.

I fear that every time the phone rings with the special ring from school that it is the school nurse calling telling me that my son’s number has dropped so low that he passed out and broke his nose from the fall. Or that he had a seizure in gym class. Or that he just tested himself and his sugar was 50 and he is crying that he wants to come home.

Or.

I fear that he gets a teacher that knows someone with Type 2 diabetes and goes into a short lesson on how if my son would just eat right and exercise he could get rid of his diabetes like her 65 year old overweight Uncle did last year. Or that the teacher would deny my son a classroom treat even though it is clearly stated that he is allowed to have any and all snacks as long as he receives insulin for it.

I could go on. And on. And on.

You get the point.

180 days until summer vacation.