Monday, March 12, 2007

Damn Diabetes

My anniversary was yesterday. ( I love you, Michael.) To celebrate, we went out to eat on Friday night and then rented a couple of movies to watch at home (since there was nothing playing at the theater worth spending our money on).

Riley and Holden stayed at my mom’s. Riley has spent the night there a few times since he was diagnosed. His sugars have been running pretty good throughout the night, so I felt good about him staying. My mom gets up and checks his sugar throughout the night like I do. But, I just feel better when his sugars cooperate and she doesn’t have to do anything with them.

I changed his set on Friday morning. Everything seemed to be going OK. I got off of work a little early to go home and change. On the way home, I got a call from my mom. Riley was getting ready to eat a snack and she had checked his sugar and it was 362. She was hoping to catch me before I went to eat (an hour away). I could hear the panic in her voice. She was trying to play it cool, but I knew she was worried that it was a set problem and I was not going to be close by to change it.

I went home and changed and called as we were leaving (45 minutes later). His sugar was now 243. OK, it was coming down some. I called again at suppertime and he was 200. Not great, but not in the 300s either.

I finally felt better and put diabetes out of my mind for the night. I knew my mom could handle it. She keeps him every day of the week.

We got home and popped one of the movies, Saw III, into the DVD player. Yes, I know, we’re just hopeless romantics aren’t we? I love horror movies. But, let me tell you, this one was pretty intense. There were several scenes where I couldn’t bare to watch and I had to turn my head away from the TV or bury my face in Michael’s chest.

The movie ended around midnight. We decided not to watch the other movie (The Departed: We watched it later. It was not nearly as good as I thought it would be and it had way, way, way too much cursing in it for me. If Leo and Nicholson hadn’t been in it, I don’t know if I would have even finished watching it.)

We were in the processes of getting ready to go to bed when the phone rang. As soon as it started ringing I knew that something was wrong.

It was Holden. He was calling to tell me that Riley’s sugar was 322. My mom wanted to know if she should give the full dose of insulin the pump recommended or cut it back a little since it was midnight.

I told Holden how much insulin to give and to recheck in an hour and a half and call me back. I hung up.

I sat on the couch with my head hung down. And, then, I started to cry.

Michael walked over and asked me why I was crying. “You wouldn’t be crying if his sugar was like that and he was here.”

“But, he’s not here. He’s there. He’s there and I’m not.”

My crying turned into sobs.

It was a mixture of a lot of things, I guess. First, guilt, because I wasn’t there with him (even though he was asleep). He’s my responsibility.

Secondly, some of it was a little selfish. I mean, I can’t even get away from it all even when he’s not with me. This was supposed to be our anniversary celebration and I was sitting on the couch blubbering like and idiot, all because of diabetes, once again.

Also, I just signed him up for school next year. This is not settling well with me. He will be attending a private school. They do not have a school nurse. His teacher will be the one caring for him. Also, the school is Pre-k through 12th grade, so Holden will be there to look after him too.

But, it’s still hard for me to think about him being there all day without either my mom or me. He has not stayed with anyone other than Michael, my mom, or me since he was diagnosed. Well, he did stay home with Holden for about an hour and a half the other night. Michael and I were at a meeting about 2 minutes away and I had my cell phone the whole time.

I kept crying and crying and crying. (I’m wondering if any of it was due to carry over from the movie also, not Saw, but Steel Magnolias)

Michael, bless him, didn’t know what to do. He held me, but there wasn’t really anything he could say to make it better.

He would say, “Maybe his basals need adjusting. Or, maybe it’s his needle.”

To which I would reply: “It doesn’t really matter, does it? I can fix his needle, I can adjust his basals, but I can’t fix him. No matter how hard I try, no matter what I do, he still has diabetes. I can’t fix that. And it kills me. It just kills me.”

So, I cried for about 30 minutes and then we went and lay in the bed. But, I couldn’t sleep. I knew my mom was supposed to call in another hour to report his sugar. Until then, I couldn’t sleep.

Michael and I lay there and talked about Riley and his future and my fears of him going to school, no more crying, just talking this time.

Then, at 1:20 the phone rang. His sugar was down to 264. Well, at least it was coming down.

I finally let myself drift off to sleep.

Riley ran high all night and awoke with a sugar of 256. Mom didn’t call until around 10:30 when he wanted snack and he was 299. (Why didn’t I call earlier? Because I was still in bed asleep. 17 months of getting up every 2-3 hours has taken its toll.)

Michael and I got up and I went and changed Riley’s needle. I didn’t know what else to do.

I didn’t correct the 299 because of the drop he usually gets with a set change. Sure enough, an hour and a half later, he was 70. I gave him a few fruit snacks and checked again in 20 minutes. He was now 49. Yep, it must have been the set causing the highs.

If he had been with me, I would have changed the needle earlier. He wouldn’t have ran high as long.

Guilt, pain, grief, anger all rolled into one. That’s part of being a parent of a child with diabetes.

My head knows Riley’s going to be OK. I know Riley can be and do anything he wants. But, my heart just want get on board with my brain.

And, I don’t know how to make it.


Shannon said...

Oh Penny. My heart is aching for you. I suppose it's time to teach your mom how to do a set change in case this happens again (is she willing to do it?)

You have so many worries on your mind. It helps to talk about them and set a game plan for any kind of kinks that may come up concerning school, care by others, etc.

Don't forget that your husband is a partner in this too and can take on some of the responsibility that you're loaded with as I'm sure he's more than willing to do. You're not alone Penny. Allow others to take on some of the responsibility too. It's too much for you to carry alone.

Penny said...


I know I have to give some of that responsibility away. I just don't want to. Somehow, it makes me feel like I have more control when I handle it myself.

My mom has done a set change before, but she doesn't like to do them. But, you know what, neither do I.

Carey said...

Shit. Sorry Penny. So sorry. We also just signed up Charlie for Kindergarten and we're having those same fears of him being out of our sight.

Over the weekend, the baby got a hold of the remote and purchased Saw III on Pay Per View. Unlike you, we're not so much into the horror flicks.

Shannon said...

I don't like doing set changes either! Jeff is in charge of that.

Look Penny, I understand you thinking that footing the responsibility helps you to feel like you have control, but look at the turmoil you're in.

Try letting others do little things at a time so you can get comfortable with the idea of letting go a bit.

I'm just concerned about you and want to see you not feel so overwhelmed :)

Scott K. Johnson said...

Hey Penny,

Thinking of you guys.

julia said...

It's really hard to give some of that control away. I totally get it.

Could you leave some syringes at your mother's and have her dose Riley with them instead of the pump when he's running high? She can draw the insulin out of the reservoir. I do that for O when she's at school and high and I think it's a site problem. I just have the nurse draw it up and she injects herself.

Why did you decide to do a private school for Riley? Just curious - I used to think about private for Olivia but I'd never send her to one now. No 504s or IEPs at a private and O needs both.

George said...

I wish we all could just get a break. We all deserve it.

You are awesome!


Penny said...


Once again you have made me laugh. Did the baby enjoy the movie at least? :-)


You sound like Riley's endo. She is always telling me to relinquish some control to keep it from being too much when he starts school. I haven't listened to her yet.




Riley will be going to private school because, well, public school around here sucks. Let me put it this way, the school system where I am has made the national news for their suckage. I went to this private school and Holden has been there since pre-K.

There are 3 other kids at this school with D (one who got it in kindergarten and is now in 6th grade) and a 6th grade teacher with D who is on a pump. All the elementary school teachers know about D, since the girl has been there for six years. And, like I said, Holden will be there all the time and I'm sure my mom and I will be popping in a lot.


Right back at ya!!

Rachel said...

Maybe take the next 5-6 months and gradually turn over a little responsibility here and there - maybe more short nights out with your husband so that Holden can learn more, maybe a night or two out with Holden so your husband can take over. (With the extra benefit of spending time with Holden during the last years of being at home.)

Small steps.

Penny said...

Great suggestions, Rachel. I especially like the one about spending more time with Holden.

julia said...

Aha. That makes sense, Penny. Sounds like they're familiar with it, which is great.