Wednesday, November 16, 2011

Ya know what ELSE I hate about diabetes?

As if there isn't enough to hate about it...

But one thing has been bugging me this week. As a caregiver for a diabetic child, I often feel so alone in his care. And I'm not talking about "alone" in the sense that I don't have support from my family and friends. (And the DOC, of course!) I do. It's just that diabetes is the kind of disease where there is no set treatment plan. There's no 1 + 1 = 2. And let's face it. I'm a girl who likes a clear plan.

There are so many variables. While we all have our endocrinologists, and they can give advice on what to do...they don't always have the answers either. They can't say, "Do this and it will fix it." Half the time I feel like I'm the one driving his treatment and it's a scary place to live. I ask for advice when I need it...but often I'm still left here, drifting in the wind, trying whatever comes to mind to try and "fix" what is wrong with his blood sugars.

I try and try and try different things until I'm left with a cardboard boat, patched with duct tape...sinking faster than I can keep it afloat.

I hate having to make major decisions regarding his care alone. People and doctors can give advice, but it comes down to what we, as his parents think is best. Isn't that scary? It really is to me. 

Today, again, he had a bummer day at school. His site pulled, he had a hard time pricking his finger because the Multiclix was stuck, he wanted to get out to recess, but his BG was low. And he cried. He told the school nurse he wished he didn't have diabetes. That made me sad.

I want him to be happy. I want to make this easier for him. I will do whatever it takes to allow him to play like a regular kid and not have to worry about all of this stuff so much. It's my job to let him feel as free as he can, and if it means investigating another pump after only using the Ping for a year, we'll do it. I was completely opposed to it a month ago, but after seeing him break down today, I'm open to it.

This is all so hard. There is this huge neverending-ness to diabetes. Even when you think you have it all figured out, you just don't.

9 comments:

  1. I hear you loud and clear. I have been struggling with the idea that the hospital was our 'safety net', that they knew more about R's care than we did....and seriously when it dawned on me that we were ALONE...practically... it was a heavy burden.
    Also, I totally know what you mean about liking a clear plan, and that is NOT diabetes. There isnt a formula that works each and every time. Hope a pump change is a success for you. BIG HUGS xx.

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  2. There used to be a clip you could attach to the back of the Animas pump where you could wind the tubing around it so there would be very little slack but you could not wear the clip as well and would have to wear a waist it. It's either wind up the tubing or use the clip either/or. Since the Omni Pod is not a great deal of money upfront, you could maybe try the pod and insurance will just pay for the Pod supplies. You can always go back to the Ping if you want to. It's his body; should be his choice. He is having too many problems with the tubing. It's possible insurance will cover the pod pump itself if your endo documents he is having problems with the tubing and orders it as a matter of medical necessity. If sites keep falling out, leading to high blood sugars, it is. Good luck. Sounds to me like the pod is going to be a better fit for you guys.

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  3. It's also so hard to explain this to people who aren't parents of a CWD or a PWD. They just don't really understand the random and unpredictable disease that diabetes can be and how you are constantly thinking and planning for it. It's so hard to teach others about your child because part of what you do is learned only from experience and intuition. Great post- thanks for putting it out there!

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  4. yeah... same.

    That's all I got.

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  5. At least we're good at being experts. We've all had a lot of practice. It's never easy having to make the calls, but better us than someone who doesn't know our kid and how he deals with diabetes. Our kids are so lucky to have us. Because all the d-moms are a real dedicated bunch. I'm sure your love is so evident to him. Hope things look up soon.

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  6. i hear ya...the never-ending road gets to me a lot...a lot lot...it's beyond hard to deal with sometimes. HUGS

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  7. For me, it is helpful to think of other struggles that children and their parents go through and recognize that D is MY son's struggle but there are many others that don't have quick fixes and really wear on kids' emotions too. I have a friend who's son has autism and dyslexia. There are no quick fixes for these. There is no plan - do x and y will happen. And her son is only 9 and has wished that he was never born. That is heartbreaking. I guess my point is that it can be easy to see 'everyone else' as being normal and having no problems like my child has to deal with. But that's not true. It makes me feel less alone to know that very few (if any) have a perfect life with no struggle or heartbreak to deal with and that makes me feel less alone.

    My only suggestion on the tubing problems is that my son uses Tallygear.com pump belts. Everything is kept very secure around his waist and under his shirt. We have been fortunate to have almost no problems with pulled tubing.

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  8. oh man, when L first said she wished she didn't have it, it was so heartbreaking, because as a parent, you want to do everything you can to keep them from getting hurt and being upset, and this is something none of us had any control over. sigh.

    just know that we're all out here, feeling the same way.

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  9. Same-same here! After Bean's appointment Thursday we've had some odd numbers and it's pretty much up to me to try this and that until they get back to 'normal' (ha, what the hell is that?!?)
    It is very scary, frustrating, ridiculous that those who spent years and lots of money to figure all of this out can only offer suggestions. I appreciate that they are there, don't get me wrong; but sometimes I wish they could just say 'do this' and it would work!

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