Thursday, December 03, 2009

Sometimes You've Just Gotta Let It Out

I haven’t come here to vent in a long time. Well, today I’m breaking that dry spell.

Let me start off by saying: I. Hate. Diabetes. With. An. Intense. Passion

Ahh, I feel better already.

Riley’s sugars haven’t been behaving lately. Well, when do they ever behave? But, for the past couple of months I’ve been able to whip them into shape pretty quickly when they did get out of line.

He has started running high quite a bit. I went from making basal adjustments every 2-3 weeks to making basal adjustments weekly, sometimes 2 times a week, with little results.

I knew it was coming. I’ve been around D long enough to know that, but still it pisses me off every time.

Couple that with the fact that Riley has been invited to two birthday parties. And they are both sleepovers!!! Oh, the joy.

When I got the mail yesterday I opened an envelope and received the first invitation. As I read it I could feel the tears forming in my eyes. I knew immediately that he couldn’t actually spend the night. It’s just not doable right now. Yet, it made me so mad that he couldn’t. It just gave me another reason to hate diabetes and what it does to my child. I dreaded telling him that he couldn’t stay. I don’t let him use diabetes as an “excuse” not to do things, but there I was about to tell him just that, that he couldn’t do something because of his diabetes.

I was sitting on the couch thinking of how to approach the situation when he opened his book bag and handed me another envelope. “B. is having a sleepover for his birthday!” He beamed as he handed me the envelope and my heart sank.

B. is Riley’s best friend. I’m sure Riley had been thinking of how much fun they would have all day. I could feel the tears stinging my eyes again. A million thoughts ran through my mind. What if I asked B’s mom to check his sugar? What if I snuck in at 3 am and checked it myself? What if I gave Riley a cell phone and called and woke him up to check himself?

I quickly realized that none of those were feasible. You see, we have always checked Riley’s sugar during the night. There are not many nights that I don’t give insulin or make a basal decrease. Riley has never woken himself up when he was low. Not checking is just not an option. And, putting that on someone else to do is not an option either. There are just too many variables to consider.

Then, I got to thinking. Riley is only 7. I’m pretty sure I wouldn’t have let Holden spend the night off with a friend at that age. So, I used that approach instead. Besides, due to a comment Riley had made earlier in the day I really didn’t want to use diabetes as the reason.

“Riley, I know you really want to spend the night at B’s house, but I think you’re still a little too young. I wouldn’t have let Holden spend the night away at your age either.”

“How about if I talk to B’s mom and see what time bedtime will be and I will pick you up right before everyone else goes to bed? Then, you’ll really only miss the sleeping part.”

“OK”, he said. But, I could tell he was disappointed.

Would I have let him spend the night off if he didn’t have D? I don’t know. I really can’t answer it. He does have it. I don’t know how to make a decision about him without taking diabetes into account. I know one day the time will come for a sleepover, but not right now.

Not long after this conversation Riley said his sugar felt low. It was 65 with 1.8 units of insulin on board. For Riley, that is a ton of insulin. So, I decided to take him for ice cream.

Yes, I just got through saying that Riley had been running high for days. Maybe ice cream wasn’t the best decision at the time. But, because of something Riley had said earlier I did it anyway.

Earlier, before I saw either of the invitations, I told Riley we had to go on and change his needle. It was a site change day anyway and he had a sugar in the 300s and one in the 400s at school. I knew it needed to be changed soon.

Riley was giving me a hard time about it and really dragging his feet. I told him it was important to go on and get it changed because if he didn’t his sugar might be in the 500s.

He looked right at me and said, “I don’t care if my sugar goes into the 500s!”

My stomach lurched. “Why not?”

He shrugged his shoulders, “I don’t know. I just don’t care.”

I left it at that. I did the site change. And, then when his sugar went low I’m not sure why I decided ice cream was appropriate.

Well, yes I do. I felt guilty. I felt guilty because I can’t “fix” him. I felt guilty because he really shouldn’t have to care what his sugar is. He should be able to eat all the ice cream he wants without worrying what it might do to his sugar. And, I felt guilty because he’ll never be able to do that, at least not without consequences.

We got in the car. On the drive over I glanced at him in the rear view window. The glow from his DS was on his face. He looked so sweet. And, once again, the tears welled up in my eyes. All I could think was, “It just isn’t fair. Why couldn’t it just be me?”

I don’t know why diabetes gets to me like that sometimes. It is a very rare occasion when I let diabetes get me down anymore. But, it still happens. And, every time, it shocks me, like I thought I was immune or something.

Riley turned off his DS and I took it as an opportunity to start a conversation.

“Hey, Riley, earlier today when you said you didn’t care if your sugar went in the 500s or not, why did you say that?”

All I got was a shoulder shrug.

“Did you really mean it?”

“I don’t know.”

“Well, you know it’s OK to get angry about diabetes sometimes, but you always have to take care of yourself. Sometimes your sugars are going to be high and there really seems to be no reason for it. But, if you know how to keep it from happening, then you should always try to do that. You should always take insulin whenever you eat. And, you know you shouldn’t eat ice cream and sweets every day. No one should do that, sweetie, even me.”

“And, even I eat things I shouldn’t. I eat things that have too much fat in them and that’s not good for me. But, I try not to do it all the time. So, I know that sometimes you may eat things that you shouldn’t. But, what is important is that you always take insulin for it.”

“Do you understand?”

“Yes. Like it’s OK to eat cake at B’s birthday party. I just don’t need to eat stuff like that every day. And, I just need to call you and ask how many carbs it is so I know how much insulin to take.”

“That’s right, little man.” I’m trying to suppress the uneasy feeling I have from having him go to his first birthday party by himself. I’ll deal with that later.

As we’re waiting in the drive-thru for his chocolate ice cream cone, Riley asked, “Hey, Mom, how am I ever going to get to go to a sleep over? What will I do about checking my sugar in the middle of the night? Maybe I can just set an alarm clock and check it myself.”

“Maybe”. And, there’s the damn tears again stinging my eyes. My 7 year old should not have to worry about things like that. He just shouldn’t.

Much to my chagrin the cone was piled high with chocolate ice cream. But, Riley enjoyed every last carb-filled bite of it. And, his sugars ran high all night long because of it.

And, his sugars haven’t been under 200 today until a few minutes ago when it was 150.

I think I can deal with the sugars if that’s all there was to deal with. It’s the other things that really get to me. Things that affect his psyche. Things that make him feel different. Things that no child should have to worry about.

The sugars will eventually come down. But, I don’t know how long these emotions are going to affect him. And, that’s what really bothers me.


Kelly said...

Geez, I'm sorry Penny. We havent done a sleep over yet either....well, except for family.

We have been having a VERY hard time with Maddison's numbers too. Basals doubles, ratio's changed....4 weeks later I finally got two good days without highs....and then this morning.....consistant 60's.

I know exactly how you feel. We always seem to think that we have been there and dealt with this or that so we should be over the emotions of it. I guess that just isnt possible when its our children. :(

I know my blog is a bummer most times.....but venting and getting it out is a necessity for me. We've missed you in blog land! Vent it all out, we all know just how you feel at this moment. ((HUGS))

Amy said...

Oh Penny! Sorry!! However...I think you handled it great!! Riley is such a lucky boy to have a mama like you! And I would have TOTALLY done the ice cream thing! :)

:) Tracie said...

Jessi's 9 and has been invited to a couple of sleepover parties and hasn't gone to one. It totally sucks not letting her go and trying to explain a better reason than diabetes to spare her feelings.

I struggle with wondering who will check her in the middle of the night. How do I put the burden on another mom to please check my kid in the middle of the night, then could you call me and I'll tell you what to do? Because I know what it takes, I feel I'd be asking too much. And on top of that, would they even remember? It's not like they do it every night like we do.

Sounds like you handled things pretty well. Hope he'll enjoy the party up until the sleeping part anyway!

Lora said...

I have tears in my eyes because I know what your going through.
We have the dilema of Justin's sister attending sleepovers and he doesn't understand why he can't.

I think you handled it perfectly :)
Great job mom.

Anonymous said...

I don't have a child with diabetes but I do have a child with an intellectual disability. And gosh it is the same for all of us - the pain, the fact we have to be so competent and vigilant. thank you for sharing this

Diabetes Super MOM said...

I am so glad you posted this, and got that out. It is very hard and no one kid or adult should have to face these things.

The best part is that your an amazing mom, and you really can fix him the best way you can. The ice cream thing is GREAT... I have done that so many time, in fact one time Mattie threw away ALL her supplies. Yep, I just sat and watched her and let her vent and then when she wanted to eat...
I said well you threw away your stuff... she went and go it all out and had a better attitude.

Sleep overs are hard... On the occasion Mattie did sleep over, I let her sugars slide through the night.. I know bad!

Thanks again for your post!

Sandra Miller said...


Two sleepover invitations?


I've shed a lot of tears over this very issue, angry and sad at the thought that diabetes might rob my son of this experience.

(Even though I didn't do many, I loved sleepovers as a kid.)

Please tell Riley that things will change-- that he will be able to do this.

When Joseph was younger, we did what you describe here-- simply picked him up when everyone went to bed. Then eventually we made it work by having one of us sleepover too (also gave us the chance to get to know some other parents better... :-)

Now, we still check Joseph every 2-3 hours at night (because he still never wakes up when he's low), however, in the last year, Joseph has done several sleepovers on his own.

(I was planning to blog about this at some point... your post made me realize it might be a good idea to put it out there sooner rather than later.)

The relationship you have with the parents hosting the sleepover - coupled with your own sense that you and Riley are ready to try this - will help you figure out how and when a sleepover can happen.

It might be a while, but it will happen.

I promise.

Penny, you are doing a wonderful job with Riley. That you are so sensitive to these emotional issues is such a clear testament to that fact.

Oh, and the ice cream?

A perfect choice.


- Sandra

mikraas said...

As a compromise, maybe you could invite some of Riley's friends over for a sleepover of his own? That way he stays near you but still has the fun of sleeping on the floor with some friends. I guess that would add a whole other stress to your night! ;)