Saturday, May 19, 2007

Talk me down

You know, I had many parents tell me in the beginning of this disease that checking sugars and giving insulin would just become second nature. They were right. I wish they weren't.

The last few weeks have been a blur of finger pricks, button pushes, and site changes. I test, I bolus, I change sets almost like a robot. I see a 300, I give insulin. I see a 50 and I give fruit snacks. I see a 120 and I smile. Then, I go on with my life like sticking my child with needles 10-12 times a day is perfectly normal.

When did I become complacent? When did I just accept this stupid disease?

Yes, I guess you need to accept it in some way to stay sane. But, I feel like I've almost invited diabetes in as a part of the family.

I don't know how to explain it. I just feel that by testing and bolusing and not really thinking about it, I've succumbed to the fact that Riley will always have this disease. It's just become a part of our life.

Of course, there are two sides to every coin. Accepting diabetes as a part of Riley's life is healthy, I guess. It's a little easier on the emotions. And, it's, well, realistic, practical.

But, I don't want it to be a part of Riley's life. I feel that by accepting it, I've given up hope of him ever living without it.

I've talked about a cure before. I really don't think about it all that much. I can't. The thought of a Riley that doesn't need needles and insulin seems like heaven to me. But, to think that it may never happen is very painful.

By the same token, I have to hope for a cure. I feel like if I don't, I'm somehow letting Riley down. That by not hoping I've given up.

Have I given up?

Sometimes I try to imagine Riley without diabetes. And, I can't. How sad is that? I can't see Riley just going to the cabinet, getting out a snack and eating it. It seems so foreign to me.

I'm not really sure what this post is all about. I've just been acutely aware lately of how much I have been accepting diabetes and what it does to Riley. It's in the back of my mind that I need to fight, but I just don't have the strength. I'm tired of wishing, hoping, waiting, fighting, only to get up every morning to do it all over again.

It makes me feel like diabetes has won. I feel like I've given up the fight, like I've raised the white flag. Like I'm telling diabetes it's OK that it has taken up residence in my child's body. I used to feel like it was just renting a space. Now, I see a little sign that says "under contract" and it's only a matter of filling out the paperwork before Riley's body will be it's permanent home.

I guess the fact that I'm writing this post and pondering all these things means I haven't given up hope just yet. But, I feel like I'm really close. And, that scares me.

I'm teetering on the brink of giving up.

I need someone to talk me off the ledge.

11 comments:

Major Bedhead said...

You have to treat diabetes as part of the family because it is. And unless or until they find a cure, it's a heck of a lot easier to incorporate it into your life than to be upset and angry about it all the time.

I have pretty much given up hoping for a cure because I found it made me too depressed, anxious and sad.

I don't know if that's going to help you off the ledge, though. It's just what I've done in order to not let this disease consume my sanity.

Sandra Miller said...

Penny-

Oh man, I wish I could talk you down.

You see, I experienced these same feelings almost a year ago-- struggling to hang onto that hope.

But eventually, I found that if I let myself feel truly hopeful, the relentless nature of the disease became that much more unbearable.

So I filed it away.

Sure, I let myself get excited when I read about things like the Brazilian clinical trial.

But then I put it back and focus on now-- on doing (and accepting) all the things you describe in this post.

Don't get me wrong-- I still have moments of intense anger and sadness.

But it is what it is.

And by accepting this fact -- that diabetes is a part (albeit a very small part) of Joseph that may never go away -- it's become a lot easier to get on with the business of living.

Hang in there,

Sandra

Shannon said...

I really can't add more to what Julia and Sandra said because they already wrote what I wanted to say.

You're not giving up, you're just getting on with life....

Diabetes wins when a person obsesses and lets it get them angry.

Diabetes has not won when you are living your life the way you should.

Carey said...

I also agree completely with the previous comments. I hear what you're saying, but that's our daily routine. After testing and bolusing etc. day after day after day, it's only natural for some complacency.

Whether you accept it or not, it's still there. We have no choice. Perhaps it's healthy to not count on a cure or obsess about a cure, but simply hope for one ... someday.

We can raise money. We can raise awareness. We can learn everything there is to learn about diabetes management. There's not much else we can do.

Scott K. Johnson said...

I agree with you.

I don't think it's Ok to just settle for this stuff.

We have to. And we do what we gotta do to get by, but it pisses me off too.

It is all still very primitive. Don't get me wrong. I appreciate the tools we have today. But I look forward to better ways to manage.

Danny said...

In 30 minutes, I'll be donating blood, something I do now on a regular basis. I gave twice a long time ago, then decided that it wasn't for me, because I'm really too squeamish when it comes with needles and blood.

Then my four year-old son was diagnosed with type 1 diabetes.

From day one, he has handled it so well. I know I wouldn't have. His courage has inspired me, and now I give blood regularly. I figure, if he can endure needles every day (we don't use the pump yet), then I can endure them a few times a year. He's my inspiration. And when it comes to my own struggle with his diabetes, it helps. I'm not sure why, but it does.

Megan said...

Penny, these are really tough feelings. I can't imagine being a parent of a child with diabetes.

I think Julia and everyone else hit the nail on the head. You have to accept diabetes. You just have to. It's very healthy too.

While I don't want to give up hope for a cure, I find not dwelling on wishing for a cure helps me cope with life in general. I refuse to spend my life wishing for a cure when I can just deal with diabetes the best I can now with what I've got now.

You are so strong, and Riley is lucky to have you.

*hugs*

Penny said...

Thank you guys for your thoughts.

And, Megan, that (((hug))) was just what I needed this morning. Thanks.

Jamie said...

I pretty much agree with what everyone has written.

I don't think I've fully "accepted" diabetes into the family though. It is very robotic - we do what has to be done so we can get on with our lives - but I'm still mad. I'm not all consumed with it - I still have that fire in me to say I will do what I can, in my power, to help and do what needs to be done to help those researchers find a cure .... but, yeah, it's not on my mind 24/7.

It's there - we deal with it - but we don't ever have to accept it as a part of the family.

I love my daughter for who she is. She has juvenile diabetes and we will take care of her the best that we humanly can and will love her no matter what :)

It is what it is.

Paige said...

Penny,

I just wanted to let you know that I have been thinking about you a lot since I read this post. I am still so new to all this, but already I have moments of feeling burned out. It's all so relentless. Sometimes what keeps me going is knowing that I have to mirror a good attitude for Olivia; she's so young and soaks up so much from me. I don't necessarily try to put a happy spin on things, but I do have to act like diabetes and all that comes with it in our day-to-day is our "normal." I've started telling her that it's OK to cry, sometimes we need to cry, but that we then have to move on. And we do. Sometimes it's all we can do.

Keep your head up. You are doing a great job.

Paige

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