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.