Thursday, April 26, 2007

The never-ending story

(*Warning: This post contains nothing positive. It is born out of frustration, anger, and lack of sleep. If you are looking for something uplifting, you've come to the wrong place.*)

I awoke this morning in a horrible mood. It didn't help that I didn't sleep well last night. Riley's sugars wouldn't let me.

I wasn't just in a horrible mood, I was angry. Very angry. And tired. Very, very tired. Not just physically tired, but mentally and emotionally tired.

As I fumbled with the shower knobs and held my hand under the water to get just the right temperature, I couldn't wait to get under the hot stream of water. I'm not a morning person. But, usually after I get in the shower and let the water wash over my face, the cobwebs start to loosen and I start to feel better.

Not this morning. This morning, I barely felt the water.

All I felt was anger. Anger at this stupid disease. Anger that so much of my life is wrapped up in it. Anger that I would spend most of the morning debating whether I should change Riley's set a day early or not, just in case the highs last night were caused by a bad set.

As I was soaping up my hair I thought, "What is wrong with me?"

Riley's sugars have been pretty good lately. They have their moments like always. But his average is around 160. I'm quite happy with that. So, it's not the numbers.

I used to think it was. When I'd get frustrated I'd blame it on the crappy numbers, the soaring highs or the sinking lows. But, now, I can't blame it on the numbers.

It's not the numbers, it's the life. It's the life that we are forced to lead because of this stupid disease. My family cannot leave the house without first checking to make sure Riley has enough strips in his case, a few snacks, fruit snacks for lows, extra sets, etc, etc.

We can't just take off for a day at the park without first considering what Riley's sugar is and then debate on whether or not to decrease his pump.

And, if we go to the park for any length of time, Riley's happy play will be interrupted by a finger stick. And, if his sugar is low, well, he gets to consume sugar and sit and watch all the other kids continue to play while he waits for his sugar to come up.

I can't just go out to eat with my husband without worrying about what's going on with Riley. Michael and I have not been to a movie by ourselves since Riley was diagnosed. Why? Because I couldn't enjoy myself because I would have to turn off my cell and I'd worry that something would happen to Riley and my mom wouldn't be able to reach me.

I never, ever, ever feel like I can relax. I can never just be. As much as I don't want it to be, diabetes is always there.

It's in the car with me while I'm driving from one patient's house to the next. It's in the restaurant with me while Michael and I are trying to enjoy some time to ourselves. It's even in the bed with me at night.

As I was putting the conditioner in my hair, I was thinking that if I had diabetes I would be so screwed right now. You know why? Because, I wouldn't test like I should. I wouldn't count carbs. I wouldn't log the sugars I did take. I would try to forget about it for a while, try to take a break.

But, no one can really take a break from it. Even if you don't test, don't count carbs, don't bolus, diabetes is still there. It's still sneering at you. "Go on, ignore me. You'll regret it later."

Then I thought "Snap out of it." You guys with diabetes, you'll be doing this for the rest of your life. You can see no end in sight.

Me? One day Riley will take over all this stuff, the testing, the counting, the bolusing.

But, that's not a comfort to me. I hate the thought of Riley having to deal with this all himself.

Then, I thought of the many times that Scott has told me that it's really not going to be as big a deal for Riley as it is for me. And, I know he's right. Riley will probably be just fine. He'll incorporate diabetes into his life. He'll curse it sometimes, I'm sure, but he'll be OK.

You guys, you feel the highs and the lows. You agonize over having one more piece of cake. You curse the meter when it gives you a reading you don't want to see.

Us, we parents, we want to feel those highs and lows. We want to take them away from our child. We agonize when we watch our child choose that other piece of cake knowing it's probably not going mean good things for his or her sugar.

We worry.

And, maybe that's what my problem really is. Riley will one day take over the tedious day to day management of this disease. But, my worry, it's not going anywhere.

Not just that, but that heartbreak that I have for him will always be there. It kills me to watch him live with this.

When he walks across the floor and his tube is sticking out of the waistband of his pants, my heart breaks a little. When I see him struggle to put his pants on and try not to let his pump fall in the floor, my heart breaks some more. When I have to tell him to stop pretending to be a Jedi and to sit down for a little while because his sugar is low, it breaks some more.

I admire all of you who live with this disease. I know you have your days when diabetes might get you down, but you trudge ahead. I'm not sure I could handle it all like you guys do.

But, just like there is no end in site to the testing and bolusing you guys with diabetes have to endure, there is no end in site to my heartbreak for my child.


Scott K. Johnson said...

And we so admire you incredible parents - your job is so much harder than ours.

It is a struggle, the never ending of it all. And it is frustrating, and it does interrupt things. But we are strong because we find a way to live a happy and fulfilling life.

Wendy Morgan said...

I hear you.

Jamie said...

Amen, Penny.

When I get in the same mood as you're in - I feel the EXACT same way.

Hang in there - we're all in the same boat and we're not alone in this battle :)


Bernard said...


You are doing a wonderful job, and it's especially hard because your son is affected by this blight.

Reading your post, made me wonder if this is some of what my parents felt when I was a teenager with this disease. I really can't imagine what it's like.

I really believe that we will soon see dramatic improvements in diabetes treatment options. First of all there are now several V1.0 CGM options. There's a lot of exciting research going on. Plus there are some really great new pumps in development.

So hang tough I know it's also hard on the family. Maybe 35 years from now Riley will understand just how much you're doing for him.

George said...

Penny, I am so thankful for parents like you. I think living with it is easier then being the parent.

I admire you. I do not know how I would handle it if one of my kids had it.
You are amazing Penny. Thank you for being a great mom!

Carey said...

You/we have every reason to be angry. But thank god it's not a hopeless disease. All of your sleepless nights and the amazing job you're doing with Riley will prepare him for the cure ... whenever it comes.

Bams said...

Riley will benefit so much with all your effort and support! Thats all a kid really needs, support and encouragement. Penny you are an amazing mother and person, I hope you feel better :)


Nicole P said...

Penny -

I admire your strength in the face of what is a terrible, frustrating enemy. This disease is relentless - and you, as your son's guardian, protector - the center of his world - bear the brunt of the battles with it.

Thank you for showing me my mother's perspective - something I'd never really known in such an intimate way - until the OC.

You are doing a GREAT job in the face of the D - and Riley will be stronger, better, more fulfilled because of you.

Scott is right - the struggle is never-ending - but we have to find a way to not let it eat at us. I consider my mother's shouldering much of the burden during my childhood with this disease to have been her greatest gift to me. I never worried - because she ALWAYS did. And made me less apt to worry as I grew - because I could still hear her voice telling me "It'll be OK. You just have to stay on top of it." And I do - because she taught me that.

Penny - I'm sending you my strong thoughts across this crazy internet landscape - I hope it helps.

Cheri said...

I just came across your page here, and began reading. My heart goes out to you! I hope you can continue to find the strength to go on each sounds like you are doing the best you can.
I understand your feelings some. I have 4 kids, ages 11, 9, 6, & 5. My 6 yr. old (Joshua) has asthma, mildly thankfully. But he is the one that seems to have one thing after another, while the other 3 remain healthy. Now, for months now, we are trying to figure out his urinating issues. Some days, he tries to urinate and it only trickles out. And he goes back 5 minutes later to finish urinating. Not sure what is going on....just know that I have to call the urologist again.
Anyway, good luck to you and your family!

Lisa said...

We just started with this disease, almost a month now. I already feel the way that you described. I think you are doing a really great job.