Monthly Archives: January 2013

Diaversary

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Diaversary. Weird word.

What does it even mean?

I’m not 100% sure, but I think it means, “diabetes anniversary”. But, it could mean “diagnosis anniversary”.

Either way, it sucks.

It is not something I’m happy about.

I don’t even want to acknowledge it, let alone celebrate it.

I suppose it’s all about the way you look at things. Glass half full versus glass half empty kind of thing.

I know I am supposed to be positive and I usually do try to find the silver lining in every situation. I am always impressed, amazed, and flabbergasted when I read blogs, articles and Facebook posts from people who are going through significant struggles and they are so positive.

But I just can’t be that person today.

There is nothing good about my son being diagnosed with this awful disease a year ago. Nothing.

For 365 days now, his life has literally been threatened.

Veterans of this disease probably don’t think of it that way. Or they don’t focus on it that way. But I am still a newbie, and right now I feel like I will never be able to focus on anything else.

Every day is affected by diabetes.

Even if Medium is having a good day and his numbers are good, I inevitably read on Facebook about someone else’s struggle with their own or their child’s sugars that day. Or I read in the news that someone has died as a result of their diabetes.

I know it is all about perspective.

Because every day there are also millions of people living successful, happy, meaningful lives, despite their diabetes. Every day there are people posting good numbers or successful sleepovers or trips to the movies. Every day people with diabetes are getting married, having healthy babies, graduating from college, playing professional sports. The point is, they are living with diabetes. And so maybe I will be able to see things differently one day, too.

But today is not that day.

Today marks an event that happened a year ago, that changed my life forever; re-defined the word “mother” for me. But more importantly, my son’s life has forever been changed. He is forced to head down a path that I didn’t choose for him. It is a path that no one would choose. God chose this path for him, and maybe someday I will understand why. But right now, I disagree with God. Right now, God and I are going to agree to disagree on this one.

My oldest son, Large, has started talking about driving. He will turn 14 this year and in Kansas, where we live, kids get their driving permits when they are 14, so it is on his mind.

While I was driving home from work last night and driving by the hospital where Medium’s endocrinologist is, a thought smacked me across the face.

Medium will be 14 one day, too. He will want to get his driver’s permit. He will turn 16 and want to drive someday.

This is one of, I’m sure, many situations that I had not yet thought about. The questions started flooding my brain. Will I let him drive? Will I make him check his blood sugar before he starts up the engine every time? Will I ever let him drive alone? How have other D-moms and dad handled this situation?

It just sucks so much for him. I know that is a pretty immature and simplistic way to put it, but it does. It sucks rocks. Big ones.

Not only does he have to have this horrid disease which has robbed him of his innocent and carefree childhood. But it makes him feel like crap sometimes, he has to stab himself with needles 10 times a day (which if you’re counting and can do simple math is 3,650 finger stabbings since diagnosis a year ago), play dates and sleepovers at other people’s houses are almost non-existent, he has to be tethered to a device 24-7 FOR THE REST OF HIS LIFE, and he can never just live in the moment. He has to be one step ahead of the game at all times. He has to check his sugar, make sure he has food to treat a low, make sure he has his meter and extra test strips every time he leaves the house. He is singled out at school as a kid with a medical condition.

That is no way for a child to live.

It is so not fair.

And besides how worried I am all the time about his long term health and whether or not the life-saving insulin we give him is going to kill him overnight while we are all sleeping, I am so, so sad for him and this life he is forced to lead.

I know he will have as a great a life as possible, because I will see to it. But the reality is that he has type 1 diabetes.

And that sucks.

And so today, on Medium’s first diaverary, I will not celebrate.

Maybe next January 24th I will feel differently.

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Hell Hath No Fury

I’ve had a house guest for almost a year now. He was not invited, and he won’t leave. I’ve been really busy for the last few months so we’ve been able to stay out of each other’s way, for the most part.

But Medium’s numbers have been totally whack lately and it’s all his fault. The uninvited guest, that is.

The other night when we checked at bedtime he was 467……WTH? 467??? Just two hours earlier he was in the 100’s. So of course I rage bolused on him and then checked  him 2 hours later and he was 187. Then I decided to check him again at 3:00 a.m. because I got up to pee.

My bleary eyes watched the countdown on the meter 5, 4, 3, 2, 1…..54.

Blink. Blink.

54.

Get the hell out of my house. I’m so over you, you don’t even know it.

It’s easy to push him to the back of my mind when I am extremely busy. It is easy for me to not get down about him when I don’t have time to think about him.

But things have finally slowed down a little bit in my life and now he is all up in my grill again.

And as much as I want to stick my head in the sand and ignore him, I can’t.

Because my son’s life depends on me paying attention to the rude, ugly, smelly, obtrusive and down-right abusive guest.

So here I sit. Vigilantly watching the stupid SOB.

He’d better sleep with one eye open.

Hell hath no fury like a woman whose child’s life has been threatened.

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A Mother’s Wish

sunrise tree***So….it has been so long since I have blogged that I just found this post that I wrote back at the beginning of December and, for reasons that I cannot remember, I did not post. So this should have been posted on December 2nd….better late than never??? Anyway….

Tonight I met the mom of a boy that is in the cast of Nuncrackers with Large. We’ve know of this boy for a while because he is active in the Kansas City theater community, but this is the first time he and Large have done a show together. Several of us parents were lamenting at how busy life is especially with these theater kids and rehearsals and how most of us live so far away from downtown and the areas where most of the theaters are.  All of us in the conversation were working moms. One of the mom’s has recently gone back to full time work and I was commiserating with her as less than 2 years ago I went from part time to full time too. I mentioned how that was already hard and then Medium was diagnosed with t1d this year and how much I hate being so far away from him every day. So the mom of this other boy sits up and says that her oldest has type 1 and has had it for 14 years. Who knew?  She was asking how we were doing and commented how the first year was the hardest.

I sort of unleashed on her and told her about the downward spiral I took into the deep, dark pit of despair (the DDPOD) right after diagnosis. I told her that what sent me into that pit was reading things, mostly blogs on the internet, and being smacked in the face with the reality of what our life was going to be like and all of the things that I hadn’t yet worried about but now knew to worry about. I told her how I started a blog to deal with my emotions. She told me that she wrote and recorded a song with her son about how she felt. And as she was telling me this it was sounding really familiar. Turns out, we got her CD in the hospital with a bunch of other stuff; poems, books, websites, etc. And her song was one of the things that I just could not listen to in those early days. The words were written inside the CD and I started to read them, but couldn’t even finish. I didn’t want to learn any more things that I needed to worry about. I already knew that I was praying for a cure, but I wasn’t ready to really know what that meant. Because what it meant was that every day for the rest of my life I would hope and pray for a cure so that my son could live a long, happy life with legs that would take him where he wanted to go. So that he could see the world with strong eyes, and have a strong heart to find the right girl. (Words from Renee Austin’s song, “A Mother’s Wish”.)

So I came home tonight and I went somewhere I hadn’t been in a long time. I opened the drawer that held all of those poems, and books and her CD. And I got it out and I listened to it for the first time. And I cried just as hard today as I probably would have if I had listened to it back then.

Because it is true. It is the ugliest truth there is; that your child’s health and happiness are threatened every day.

But I have a different perspective now than I had ten months ago and I wasn’t crying from that same terrified place. I’m not going back into the DDPOD. That was a place where there was no hope.

I am still scared. I am still sad. I still worry every day about my son’s future.

But I have hope now.  Ten months ago I had no hope.

We are doing this. It is hard, and scary and awful sometimes. But we are doing it.

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