Like the deserts miss the rain

Thank God that week is over. I've been MIA and for good reason. Fred was out of town and my kids decided to try and kill me by not letting me sleep. Every. Single. Night.

Whether is was Elise up for 3 hours crying, the dexcom alerting to numbers that were off by sometimes as much as 200, stubborn lows, or Mattias waking up every 90 minutes, which happened every night while Fred was gone. Combine all that with the usual feeding problems and it was a nightmare.

But he's back, and I am so, so thankful. He is an awesome husband and does whatever it takes to support me. Even though his flight came in at 12:30 am, almost two hours late, he came home and talked me down from a very tall ledge (for reasons I'll get to in a moment). Mwah! Love ya, Freddie!

I am also thankful for my friend Liz, who came over twice, brought me lunch, and listened as I did the "ugly cry" for two hours. She also gave me some very wonderful advice, which I appreciate even more because I know it wasn't easy for her to do, because she was unsure of how I would take it. Thank you Liz, it's the REAL friend who will tell you the stuff you don't necessarily want to hear.

I started taking a prescription drug for my nursing issues. I was very leery about taking it because of the side effects, but after learning Mattias hadn't gained any weight in 3 weeks, I felt I had no choice. It has been wonderful and awful all at the same time.

Wonderful because my supply has almost doubled and I've only been taking it for a few days. Since I started, Mattias stopped waking up every 90 minutes at night, and only woke up once to feed. Ah-MA-zing! He also seems more content during the day.

Awful because the side effects really are terrible. During the day, the fatigue is so bad I feel like I'm going to fall over. I can't concentrate and can barely form a coherent sentence. And at night I lay in bed, suffering through panic attacks. The night Fred got home, it was really bad. I had gone to bed at 9:30, and was unable to fall asleep (read: pass out from sheer exhaustion) until almost 3:00 am. I cannot even begin to explain how horrible it felt. I was so tired, but couldn't sit still. At one point I remember thinking if removed my pjs and went walking out in the pouring rain, I would be okay (yeah... weird. I know). Thankfully, Fred came home and sat with me, attempting to calm me down.

After all that, you'd think I would stop taking it, right? Not so much. I did cut my dose (after consulting my doctor) in half, but I have my reasons for continuing.

The way I look at it is this; as parents of a diabetic, we don't have to wake up 2 - 3 (sometimes more) times a night to check our kids. In fact, some endos don't understand why we do it. But we do. For our kids. For their safety. For their health. Often at the detriment of our own. Because we would do anything to avoid the unimaginable.

Now Mattias will not starve, but to me his health is at risk. He started in the 50th percentile for weight and now he's in the 10th. He has feeding issues and I will do anything I can to help him.

The good news is the lower dose doesn't make me quite as crazy. I still get agitated, but I can deal with it. I'm also not going to take it at bedtime, because that I can't deal with.

If you've made it this far, congrats. I know there has been a lot going on in the DOC lately, but I haven't had time time or energy to blog, read other blogs or comment. Those of you who are going through the fire right now, please know that you are in my prayers.

Hopefully I'll get my crap together soon. Because I miss you guys.

When a good bra just won't cut it.

Wednesday - Who is your biggest supporter?

And when I'm talking about bras, of course I'm using another word for support.

While my husband is amazing, I wouldn't consider him my greatest supporter... because he is 100% as involved with Elise's care as I am. He is the best partner-in-crime at battling this disease I could ever ask for.

I've said it before, and I'll say it again; I would climb to the highest speedbump in north Texas (there aren't any mountains or even hills around here) to proclaim the on-line D community as THE best support system I could ever ask for. Especially the D-Mom and Dads. Without them, I would be curled up into a ball; a quivering mass of jelly and most likely certifiable by now.

If I ever have a question; they are there. A rant; they are all ears. They cheer on our triumphs and cry with us when we despair. Best of all, they get it. I love these people like family, and most of them I've never even met in real life.

My only complaint is that they are scattered all over North America.

People, we need to start work on that commune!

Why we do what we do

My heart is breaking for a family I have never met, yet am connected to because of a terrible disease. The Mom went into her son's room one morning, only to find he had passed away during the night, they think from a low blood sugar. His name was Tyler and he was only 14 years old. He, of course, had Type 1 Diabetes.

All my D-Mom/Dads already know what I'm about to write, so I mainly write this for my friends and family members who read my blog.

When I usually explain to the uninitiated all the work that goes into caring for Elise, the response is always surprise. Especially when I get to the part about how we get up at least twice a night to check her blood sugar.

I know it seems over the top to most people, but as Elise's Mom, I will do everything in my power to protect her from harm. And I know that I cannot be there 100% of the time. I know I cannot protect her from every evil in this world, but you can bet that I will bust my ass to try.

Let's look at it this way; when you get in your car, you either strap your kiddo into their car/booster seat, or make sure they put their seat belt on, right (let's disregard this is a matter of law for the moment)? Why do you do this? You're a safe driver. You obey all posted speed limits, you use caution, and pay attention to the road.

But what you can't control are other circumstances; drunk drivers, people who text and drive; and the ones who just plain suck at driving. You have no idea at what might happen next, so you do what you can to protect your child... it's just good ol' common sense, right?

As so many others have eloquently stated, a parent is NOT a pancreas. No matter how hard I try, I cannot replace that precious organ in Elise's body. I was not created to control and maintain blood sugars. All I can do is use my common sense and do my absolute best.

And this is why we weigh every carb Elise eats.

This is why we check her blood sugar 10-12 times a day, and at least twice a night.

This is why we don't leave Elise with anyone.

It's why Elise isn't in pre-school.

It's why I ALWAYS have a watchful eye on Elise.

It's why Elise comes with us on our date nights.

And why I carry a backpack full of strange gadgets and food. It may seem odd to you, but it might just save Elise's life one day.

It's why I am so tired, so distracted, so overprotective, so consumed and so frightened. Because stories like Tyler's happen. And they happen to people who do everything they can, just like we're doing. I mean, his Mom is an ER nurse.

And so, my heart is breaking. Not just for this family, but for all the other D-families out there who hear these stories. And the need to check their kiddos a little more often and hold them a little closer consumes them that much more.

Please God, let us find a cure soon.

Do you Remember?

Think back to those first few days, weeks and months after your child was diagnosed with diabetes. Remember the pain? The fear? The uncertainty? Feeling like your whole world was turned upside down and you had no idea how to make it right again?

I remember the feelings of loneliness and isolation. Like nobody understood what I was going through.

And then I started a blog.

And then I met so many wonderful people that are part of the D-community on-line. I don't know where I would be without you.

That's why I want to introduce you to Laura. Her son was diagnosed in September at the age of 14 months. She lives in my area and just found my blog. And I am so glad she did.

Could you do me a favour and head over to her blog (just click on her name) to offer some words of support and encouragement?

You guys are wonderful.