Early on in Riley’s diagnosis I was full of hope for a cure because I had to be. I couldn’t bare the thought that Riley would have diabetes forever. My coping mechanism at the time was to believe with all my heart that there would be a cure. It was a comfort to think that one day he wouldn’t be dependant upon insulin for survival. Believing that was the key to my survival at the time.
Now, my coping mechanism has changed. Three and a half years later I still hope for a cure. I will always hope for one. But, that hope is different somehow. There is no passion behind it. My coping mechanism now is to believe that Riley will always have diabetes because if I allow myself to think otherwise I become disheartened. I can’t spend my time longing for a day that may never come.
I used to think about Riley going to college and believe that diabetes would no longer be a factor because he would be cured. Now, I think about him going off to college and I see him being a strong independent young man, a young man with the same hopes and dreams as everyone else. But, a young man with an insulin pump tethered to his side, a young man who can juggle classes and diabetes all at the same time.
I read plenty of blogs by moms whose children have been diagnosed in the last year or so. I see so much of my old self in their posts. Back in the day just about all of my time and energy was focused on diabetes. All of my hope was wrapped up in a cure. I wanted to make sure that I crossed every t and dotted every i when it came to diabetes. I had to be perfect.
Merriam-Webster defines jaded as: (a) fatigued by overwork or (b) made dull, apathetic, or cynical by experience. After reading that definition I think right next to it you could put a picture of me holding a meter and a bottle of insulin.
I'm not proud of it, but I've become jaded by diabetes. Fatigued by overwork? Check. Dull and cynical by experience? Check again. ( I haven't reached apathy though.)
I realized a long time ago that it is just not possible to be perfect when it comes to this disease. Over the years I've found that you can pour every ounce of your time and energy into diabetes and it still is what it is. You may control it for a time, but eventually it will come right back and bite you in the butt. Hard.
I've learned that it doesn't get easier. I'm not saying that to discourage anyone. Emotionally it's easier for me. But, the care of this disease is harder. Riley's growing older. He's hitting growth spurts at alarming speeds. Most of the time I just cannot keep up and he ends up high far too often. He's most certainly out of his honeymoon. It used to be that if I screwed up his pancreas would help out a little. Now, it's all on me.
So, yes I am cynical. You can only be bitten so many times before you stop putting your butt in the cage to begin with.
I’ve had to come to grips with the fact that Riley may have diabetes forever. I’ve had to learn to have peace with that. For the sake of my sanity I have to live life like there will never be a cure. Yet, I still long for the day when someone proves me wrong.
5 comments:
(((hugs)))
I can completely relate to what you are saying! In fact, I thought you might be talking about me! Only I'm dealing with an 8 year old who just hit a 7 year mark with diabetes.
I remember diagnosis and going to JDRF events and cheering a cure and wanting to steer WAY clear of those negative nellies who were WAY too angry.
Now I'm just thankful I can "do this" with my eyes closed practically. I could do better, I need to do better for her, but darn it if that bitting in the butt thing doesn't live at my house too! It doesn't make me motivated to do better, it slumps me sometimes as well. I just pray that I'm doing well enough to give her the knowledge for when she's ready for each step to take it over with grace.
Yes, I'd love a cure. A cure from The Lord would be the best, but a cure from Man would suffice. Until then, I'll have to do the best I can with her, even if I don't think it's my best...it's what we've got.
I dont have a child with diabetes but I can just imagine what you are going through. Hey, I am having a hard time having the disease as well so I couldnt imagine having a child going through it as well.
All my hugs goes out to you. I really love the look of your blog, could you please tell me how to make mine beautiful too. Thanks.
I think jaded is just about a perfect word for it!
I've lived with D for so long, and have been promised a cure for so long, that I don't hold much hope for a cure soon either. But, I too long for the day when I'm proven wrong about it!
In the meantime, I'm just going to kick ass and take names. Diabetes and all. :-)
Hi there,
My son got diabetes at 16 and is 21 now. He now has severe depression which cost him his job and his fiance. All I can say is that no matter how tough things may get in the future for your son, always remember that he never asked for this disease and it is probably the highs and lows of the disease that make him react to things irrationally at times. I am so thanksful to Banting and his cohelpers for discovering insulin, and giving us the chance to be with our loved ones longer, as diabetes used to be a death sentence. I still have a hard time believing this disease struck my son, and try to keep strong, though I am only human. If you can get a pump and supplies for your son, I suggest that, though they are expensive. Please...never make your son feel guilty for having this damned disease, just be his helper and coach in life. It is his cross to bear through life, and life will go on through love.
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