Thursday, July 19, 2007

Not today

There are times with this disease when I think things aren’t so bad. Riley is healthy. He’s happy. A lot of the time his sugars obey (for the most part).

He swims. He runs. He laughs. He does all the things a normal 5 year old does.

Yep, sometimes I can fool myself into thinking everything is fine. I look to the future and see the awesome possibilities.

Then, we have a few days of high sugars, very stubborn sugars. I try not to let them get me down. But, they do. I worry about those highs and what they are doing to his body. Those are the times I look to the future and worry about complications.

Or, there are the little conversations that pop up from time to time. Like a month or so ago when Riley’s sugar was high. He is good at telling us he’s hypo, but he seems to not really notice when he’s high.

When we were trying to get him to recognize his lows we would ask him how he felt when he had them. He said his head felt funny. Eventually, he came to realize that when his head felt funny his sugar was low.

Michael was trying to do the same thing with Riley’s high sugar. He asked Riley how he felt. Riley responded with, “Kind of like I feel when I’m low.”

“What do you mean, it kind of feels the same?”

“I don’t know.”

There was a long pause and then Riley said, “Dad?”

“Yes.”

“I wish you had diabetes.”

“Why?”

“Because then you’d know what it feels like and you wouldn’t have to ask me all the time.”

Or, just a few days ago Riley was talking with Michael again. I’m not sure exactly what the conversation was, but during the course of it, Riley said something to the effect of “when I’m older and don’t have diabetes anymore.”

What do you do with that? As a parent you don’t want to dash your child’s hope. But, you don’t want to give them false hope either.

How do you teach a 5 year old that it’s OK to hope for a cure, but not to expect one? It’s not easy.

It used to be his magic number was 10. He’d often say, “When I’m 10 I won’t have diabetes anymore.” I just hope he has a crystal ball that I don’t know about.

Yes, most of the time, I can fool myself. Most of the time I think things aren’t so bad.

But, not today, today I feel the weight of this disease bearing down on my child. Today I want to cry because I know the future won’t be easy for him. Today I want a cure
more than I have in a long time.

Today, I’m tired of w
aiting. I'm tired of being postitive. I'm tired of being upbeat. I'm tired of my child having this disease.

I can't be positive. I can't be upbeat.

Not today. Maybe tomorrow.

But, not today.

11 comments:

Shannon said...

You know I'm right there with you Penny. Today's a rough day indeed. (((hugs))) to you too.

Shannon said...

P.S. This was a really well written post, Penny.

Scott K. Johnson said...

Hey Penny, thinking of you guys.

You know, I can't tell when I'm high either. Unless I get really, really high. But usually I can't tell. It's not like a low.

With that being said, sometimes when I'm at (or crossing through) the 200 mark, I feel similar symptoms to when I'm low. It's very confusing.

Kassie said...

I, too, have a hard time with highs. I just creep up there, and unless I'm super high, I don't notice.

It sounds like Riley is coming into his own awareness of what life with diabetes means - shifting from 'when I'm 10' to 'when I'm older'. And I think you can continue to hope without promising, as we all do...

George said...

Like Scott and Kassie, I can feel lows much easier then high. They have to be very high.

It is hard to explain the feeling I get. Like a low but somehow different. It is difficult to describe.

I am not sure how to address the hope issue. You never want to lie to your children or steal their hope away. That seems something that gets lost over time and it is so very precious.

Take care. :)

Danny said...

My son turns 10 next week. He can't tell when he's high, but if he's very high, my wife and I can, because he gets very irritable. He acts in a way that makes us want to yell, "What's wrong with you!" and then we realize, "oh, THAT's what's wrong..."

BTW, my son is spending this week at a camp for kids with diabetes. I didn't realize just how much his diabetes was a part of our lives until I got to experience this one week without having to constantly monitor blood sugar, etc. It's very weird... the first time we've not had to closely monitor such things in 5 1/2 years....

Allison said...

Penny -

First, sending lots of hugs and love to you and Michael!

Second, highs are a bitch to figure out. Most of them I don't feel them until I'm very high, like 350 or higher. At that point, it's almost like the symptoms I had when I was first diagnosed: I'm very thirsty, I'm queasy. It's not fun. I would put too much pressure on him to figure out a high, because he probably won't be able to feel anything for awhile. It's just not like a low that has distinct feelings.

The important thing is that Riley pays attention to how he feels and that he learns to test whenever he feels different than usual. No matter if that feeling is a high or low, learning to test (and not guess!) is the lesson here.

As far as hope goes, let it come naturally. Children talk about the future in fantastical ways - not just related to diabetes, but in other ways: "When I grow up, I'm going to be a rock star," "When I grow up, I'm going to climb Mt. Everest." Part of you thinks that could actually happen, and part of you knows that it probably won't. If he thinks there will be a cure when he's older, that's fine.

And when the time comes and he realizes that it's not here yet and it might not ever come, all you need to do is be there for him and love him. Because you're Mom and that's really the only thing he needs from you.

Carey said...

You're right. It's not at all easy to be real with a 5-year-old regarding diabetes. This whole post breaks my heart because I can relate so much.

My mood is usually dictated by Charlie's blood sugars. I sure hope Riley's numbers are good today. Take care and have a nice weekend.

Jamie said...

Yep - I've been there with those conversations, yet Danielle is still too little to understand the magnitude of the disease and what it implicates. It breaks your heart, really. I just wish they never had to know about diabetes and what it can do to you. I wish it went away when they turned 10 as well! (or, in dani's case - she thinks it's when she turns 4).

Hang in there.

Lisa said...

Oh Penny! {{{HUGS!!!}}} Are we living the same life this week? I love reading your posts...it always reminds me that I am not the only one out there going through this. I hope Riley is doing better today.

jennifer said...

My son is 10yrs old and he's had diabetes for 2 months now for the most part his eating habits are pretty there are times when he wants to splurge and i know its hard for him not too, we don't have his blood sugar under control yet he's always really low or too high and its becoming stressful because now he seems to be taking advantage of it or maybe it's his way of coping i dont know, but when its time to do school work or chores or to even go out and ride his bike he complains that he has a headache and he feels low but then when we check him he's at a normal level, i don't know what to do sometimes i don't want to be mean because i know that this is an awful thing he has to go through. Please any advice would help us so much we are still so new to this lifestyle change.