Category: Uncategorized

My son was diagnosed (dx’d) with Type 1 diabetes on July 25, 2007. He was a baby. He was just 4 years and 1 month old.

A baby.

He is now in the 3rd grade, turning 9 in June. July 25, 2012 will be 5 years for us. This is a pivotal year for us. As of July 25, 2012 he will have diabetes longer then he has been on this Earth…(I see another post coming out of this)…

School just called and asked if my son has another diagnosis date for his Type 1 diabetes because the one they have for his 504 plan has expired. I politely explained to the ‘power that be’ that with Type 1 diabetes there is only one diagnosis date and unfortunately there is no cure so there is no way our diagnosis can expire.  The one date remains the only date of diagnosis.

‘Power that be’ proceeds to tell me that in order for the 504 plan to be carried through to next year, we have to provide a new diagnosis date every two years.

I will not provide a second diagnosis date.

It has taken me five years to come to terms with the fact that my son’s life drastically and forever changed on July 25, 2007. My son has endured over 18,000 finger pokes over the course of those five years. Each one of them a tiny badge of honor that he is a true hero in fighting this disease day in and day out. Not to mention the thousands upon thousands of carbs we have counted, the thousands of units of insulin we have used, the thousands of shots to give that insulin and the hundreds of site changes to change his pump site, no I will not change our diagnosis date to fill in paperwork.

Perhaps the paperwork should be changed for my son. Perhaps instead of a diagnosis date there should be a ‘living with’ date. This child -insert name- has been kicking the crap out of Type 1 diabetes since he was diagnosed -insert date- and will continue to do so until there is a cure…this seems like a perfect sentence to put in a 504.

Agree?

So I told the ‘power that be’ just that. No, I will not change my son’s diagnosis date for the benefit of some bureaucratic paperwork. I told her maybe the paper work should be changed to acknowledge that there is indeed only one diagnosis date with Type 1 diabetes, it never goes away, no matter how many stars we wish upon. She was stumped. I’m sure it wasn’t the first time.

I agreed to send a letter stating that my son does indeed still have Type 1 diabetes but by no means will I change his diagnosis date.

You can’t change the date of Pearl Harbor. The day that shook the US Military.

You can’t change the date of Sept. 11, 2001. The day that crushed America.

You can’t change the date of my son’s diagnosis. The day that broke my heart.

 

 

This is not a question that I ask myself. I know why I am tired. You on the other hand may ask this of me. Maybe you won’t ask me aloud, but maybe you’ve thought to yourself why am I more tired than others. I am sure some people think I exaggerate my exhaustion, or bring it on myself, or even do it for attention. There is one reason and one reason alone that I am so exhausted and that is for the health, well being and ultimately to keep my son alive. Yes, when you boil it down, I lose hours of sleep to keep my son from slipping into a coma or dying.

Let me break it down for those of you that have no experience with being a caregiver for a child with Type 1 diabetes.

Every night I check my son two hours after his snack, which usually ends up around 9:30 pm. That number requires a decision: treat with insulin, give sugar, or leave alone. Treat with insulin and leave alone have me checking again at 10:30 pm. Give sugar has me checking again at 9:45 pm, 10:00pm and then again at 10:30 pm.

The 10:30 pm check also requires a decision of some sort: treat with insulin, give sugar or leave alone. You would think that the previous numbers would have some impact on what the 10:30 pm would be, but that would be too easy. If I am lucky enough to see two ‘do nothing’ numbers in a row I can go to bed. If I see either a ‘treat with insulin’ or a ‘give sugar’ number at this point then I follow the same sequence as above both scenarios ending with a testing time of 11:30 pm.

My goal is two ‘do nothing’ numbers in a row at the hour test.

This goes on and on and on.

And on.

If I see two ‘do nothing’ numbers as my only numbers of the night I am usually good to sleep until about 5:00 am when my own internal alarm clock wakes me up wondering if my son is ok.

If I see any other number, ‘treat with insulin’ or ‘give sugar’ I must set my alarm about 2 to 3 hours after the last check to make sure that we didn’t see another dip or rise in glucose. Sometimes highs and lows are stubborn and even though they may be gone for a bit, they do appear again.

Highs that go unnoticed while sleeping can cause DKA. Lows that go unnoticed while sleeping can cause seizures or death.

Picture this in your own life. You had the greatest day at the beach with your two little ones. Everyone was happy. Everyone was safe. Tan. The smell of salt water still on their skin. You all shower. Snuggle into watch a movie knowing that everyone will drift off to a well deserved full night’s sleep. Except one of your little ones has diabetes and his blood sugar happens to be 39 ( a low low as we call it). You can scratch that well deserved sleep goodbye. Come hell or high water you cannot fall asleep. It could mean life or death for your little one.

The phrase, “Not on my watch,” takes on a whole new meaning when it’s a piece of your heart, your reason for living for whom you are keeping watch.

Tired, yes. Looking for sympathy, no. It is what it is, but now you know why I may seem more tired than other moms you know.

(Writer’s note: It took two days to complete this post as I was too tired the first day.)

 

I find with Type 1 Diabetes that the more my son lives with this disease the more I realize how little I really know.

In the beginning, almost 4 1/2 years ago, I knew nothing, but didn’t realize how little I really knew.  I knew I’d have to learn about diabetes. I knew all the stuff that came along with a new diagnosis was going to be a huge learning curve, but, as they say ignorance is bliss, and because even in the midst of all this ‘newness’ I still felt like I had a grasp on things.

I felt that testing 4-6 times a day was adequate and that skipping the over night testing was okay to do. I felt that there was really nothing I could do about the post meal spike and as long as he was in range for the next meal than I was doing okay. I figured I could count his carbs by reading labels and giving him single serving packs of everything he ate. Yes, I was broken hearted by this diagnosis. Yes, I stayed up all night after getting home from the hospital reading anything I could on how to keep my son alive. But I still felt like I knew enough that I could do this and we would be fine. This lasted about 1 month.

In hindsight this belief of ‘we are going to be okay’ must be some cosmic way of handing this disease to us in small doses. If I had known then what I know now I would have certainly crawled up into a ball and never reemerged into society. From the get go we are given just enough information to keep our child alive when leaving the hospital. There’s no talk of what highs do to the body, what lows can do to the brain, dead in the bed syndrome…none of this. It’s all about making sure your kid can eat and stay alive. Very basic, yet very necessary, information.

It’s not until you delve a little deeper into this disgusting disease that you realize the amount of knowledge you can have is never ending. Never ending. Never. I am still learning everyday even after 4 1/2 years (get that 1/2 in).

About 1 month into my son’s diagnosis I found www.type1parents.org. My intention of seeking out an internet support group was because I felt so utterly alone that I was getting scared. Scared for my well being. I was not yet scared for my son. Yet. I had no one to talk to at 2:00am when a question popped up. I needed answers about being a parent to a child with Type 1 diabetes. Little did I know I would learn the answers to so many questions that I had no idea that I should be asking.

I learned about I:C ratio. That’s when you given insulin based on the amount of food you eat. This is different than the sliding scale that gives insulin and then you eat a set amount of carbs, the method that we were on at the time.

I learned that Lantus (the basal shot) does indeed peak, and does not work for all people for the full 24 hours. Made me start researching a pump.

I learned carb factor. How to weigh all foods without worrying about serving size.

I learned that 100 before breakfast is good, 100 3 hours later is good, BUT I still needed to see what was going on between that time. 4-6 tests a day was not going to cut it.

I learned so much it would take me days to write.

After 4 1/2 years I am appreciative of the way my knowledge has grown. Slow and steady. Bits and pieces. One chunk would have been overwhelming, scary, nauseating, and very defeating. I am grateful for how little I knew then, how much I know now, and look forward to what I will know tomorrow. The more I know the more I can do for my son, and doing for my son is what it’s all about.