My letter to Santa

Dear Santa,

I know it’s been a very long time since the last time that I’ve written you a letter. I figured that you were quite busy with all of the other letters that you get each year and since I really didn’t want anything specific for Christmas, I thought I’d give you a break and let you concentrate on the other kids.

But this year, I feel the need to write again. It started a few weeks ago when we saw you at the Santa Claus parade. I glanced over to get a glimpse of Adele’s face when she saw you go by. Her beautiful eyes lit up with excitement. Everything was just perfect except for one little thing. For most people this thing often goes un-noticed, but for us it’s always there.

My list is very short. It’s actually only got 1 thing on it. Yeah, I know, most lists that you get have much more than 1 single wish. Hopefully, since mine is so short, I’m hoping that you’ll be able to deliver. It would mean so much to me and our family.

You likely mostly get requests for bikes and video games. Even if those things are cool, it’s not what I really, really want. The other day I came across this beautiful house on the top of a picturesque valley. Most people my age work very, very hard and make a lot of sacrifices each and every day of their whole lives to some day call such a house their home. Even if you were able to give me the keys to such a house and even fill it with all the latest gadgets, luxuries and bikes, it still would really not make me any happier because it’s still not what I really, really want.

Also, if you deliver on my request, I promise that I won’t ask for anything else for at least another 10, 20 years or even for the rest of my life. Promise.

So here it is. Here’s my list.

A cure for Type 1 Diabetes

That’s it.

I know it’s a tall order, but remember that it’s all I’ve really asked for in the last 25ish years and I won’t ask for anything else in the next 10, 20… Promise.

So hopefully the elves will be able to come up with a cure. Please check with JDRF (the Juvenile Diabetes Research Foundation). I’m pretty sure they have some ideas that the elves can use to help them out.

You can leave the cure medicine and the instructions under the tree and if you leave lots, I’ll share it with all of my friends that also need a cure. This would definitely be the most absolute best gift ever !!

Thanks and Merry Christmas Santa !
Mike

PS – We’ll leave you a glass of milk and some gluten-free cookies. I hope you enjoy them. Oh yeah, and a few carrots for the reindeer…

Refocus

Sitting in a work meeting, my focus begins to wander. New work policies and developments are being communicated and debated, but my mind keeps drifting. No one seems to notice that even though I am physically there, my attention is not. Adele being at school and me at work, I don’t have any physical signs that her blood sugar is okay. I can’t seem to get rid of this uneasiness, but I need to refocus on my meeting...

I keep looking at my watch wondering. Over 2 hours since her breakfast insulin bolus, how much of that insulin is still actively working? I try to do the math in my head. She had dropped significantly in the third hour after breakfast and had gone low the day before, will she do the same today? She was a bit high at 9am when I spoke to her teacher’s aid and I had corrected, but did I over-correct? I am still not convinced, but then again I remind myself that I need to refocus on my meeting…

I had stepped out of the boardroom when Adele’s TA had called at 9am, but mentally I was still in the meeting. I had listened, calculated and told the TA to tell Adele to give herself 0.5 units of insulin. It was a quick decision. It had to be and now I was second guessing myself. What if Adele’s blood sugar is dropping too fast? She doesn’t always recognize her lows. Again, I try to refocus on my meeting…

It’s scary to think of the reality of a Type 1 gamers responsibility of calculating insulin dosages without the medical training of a doctor. And the fact that the repercussions of a mistake could be fatal. I then tell myself to not go there and refocus on my meeting…

The thing with calculating insulin doses is that yes you are using mathematical calculations, but in reality it’s nothing but a slightly educated guess. When someone asks me if Adele’s blood sugar will be good for the next few hours, I can never, ever be absolutely certain that it will even if we do every single thing that we’re supposed to. Especially since the severe insulin reaction last week (http://thetype1game.blogspot.com/2010/12/when-living-is-not-dying.html). Unexplanable highs and lows can and do happen at any time. You just hope that you can catch them in time.

Adele can eat the exact same food, receive the exact same insulin dose and have the same activity level on 2 consecutive days with different blood glucose level results. That’s all part of the Type 1 game. There are just too many uncontrollable variables in the blood glucose balance equation.

I eventually made it through my meeting. Adele’s blood sugar was 8.2 (148) at 10:20 am before her snack. A bit high, but not the low that I was worrying about. After a few days of this pattern, a bit more insulin after breakfast seemed to be what it took to keep her in range, until a few days later when it became too much and she dropped to 2.3 (41) before her morning snack at school.

Adele doesn't deserve to live this life... She didn't choose this. I'm tired and beat. But I can't go there, again I remind myself to refocus.

When living is about... not dying

Adele was just sitting there asking me why everything felt and looked so weird. She kept trying to explain to me what it felt like to have a blood sugar of 1.3 (23) while my wife and I were shoving juice, Dex and gummies into her mouth. I kept telling Adele to just eat and drink even if deep down I couldn’t stop but think that she was trying to explain to me what dying felt like. I was trying to not throw up, hoping that the ingested sugar would reach her bloodstream before her nervous system decided to shut down and enter unconsciousness. She had only been sleeping about an hour and was dropping fast, 2.5 (45) 10 minutes earlier and 9.0 (162) an hour before that. It’s just not right for a 10 year old to go through something like this. It’s not right for anyone to go through something like this.

How could I have let this happen? A stubborn high that didn’t seem to want to come down (until now), a very light bedtime snack, a new infusion site, a basal set too high, a sudden increased insulin sensitivity, a Continuous Glucose Monitor vacation and a temporary loss of focus are some of the causes that come to mind. We had lost ourselves while decorating the Christmas tree and then while watching a movie. We had enjoyed this special family time together a bit too much. I should have seen this coming, but I didn’t. I just felt like crawling under a rock and dying… I felt like giving up. But I can’t. Like with every other close call, I need to dust myself off, refocus and keep going… for Adele, for our family and for myself. I need to regain the confidence that was lost.

I think it took about 60 grams to rescue her from a certain death. It may have been a little more or a little less? Whatever amount it was, as expected, it turned out to be too much. Two hours later at 1 am she had shot up to 18.2 (328). A very conservative correction brought her down to 14.1 (254) two hours after that at 4 am. I gave her another small correction and set the alarm clock. She had gone down to 9.0 (162) at 5:30 am and woke up at 8:30 am at 6.4 (115). At least it was Sunday and we didn’t have to go to work.

Even if the rest of the weekend was also full of rides on the “glucose rollercoaster”, Adele told me Sunday night that she had an awesome weekend. I guess it’s all in the perspective. Thanks for teaching me so much Ad…

Yesterday I wasn’t sure if I wanted to share this here. It seemed too personal and I was not looking for pity. I just wanted to put it behind us and move on. But then I realized that sharing stories like these are why I started the blog in the first place. This is our life. If it makes even one person realize the seriousness of the disease prompting them to support JDRF in it’s search for a Type 1 Diabetes cure, it’s well worth sharing.