Tonight I'm beside Hannah in bed. The hotel room is quiet, and I cant sleep. Just outside our room I can hear the ocean waves. Its such a peaceful and relaxing sound, yet inside my over active mind there are so many feelings at war. My Hannah now has a fever, she's sun burned and feeling yucky. I'm sure she's dehydrated, yet she's drinking water and peeing constantly it seems. After the morning battling Maddison's ketones, this isn't where I expected to be, at least not with Hannah. Everyone knows why I cant sleep.... The Diabetes demons are taking over, even when I'm supposed to be on vacation.
This morning I watched helplessly as Diabetes tried to ruin our day. A "simple" mistake is all I made. The result as noted in my previous post, was the wrath of KETONES for Maddison. There isn't any room for mistakes with Diabetes, yet we make them ever too often. Us parents aren't made to be a perfect pancreas!! Our kids pay the price when we make mistakes with Diabetes,therefore, I dont think I ever forgive myself entirely when I do make those mistakes. I keep wondering when I will.
Something else has been lingering in my mind.....On Thursday we attended a corporate breakfast engagement for JDRF. We were asked go and represent as a JDRF family. I was warned, I must say, that they would play a video of a woman speaking about her complications from Diabetes. I assured the JDRF girls that we would be fine in sitting through the video with Maddison and Hannah, after all, my girls know all to well about Grandpa's complications. What I didnt expect however, was this person to talk about her complications that set in at the age of 11, just 5 years after her diagnosis. She was diagnosed at age 6, just like Maddison.
Severe Neuropathy in her hands and feet. AT AGE 11. Gastroparesis and Retinopathy by age 18. Thats just 12 years after being diagnosed. How? Why? Did she run THAT high for years? Was she consistently in the 300's? 400's? Maybe she just fluctuated from one extreme to another? Isnt that what they now think causes most of the damage to our bodies? What if genetically her body just couldn't with stand the high blood sugars like some others seem to? GENETICALLY predisposed to complications? What if?
What if my Dads complications aren't really from his Diabetes being "out of control"?????? What if I'm genetically pre-disposed to complications? What if my 6.0 A1c means NOTHING because it is still above normal? Where will I be in 10 years? In the same place as my Dad? What about my Maddison who was diagnosed at such a young age? I've sat around and convinced myself that today we are so much better off than Diabetes years ago, and, I know we are.....but hearing these stories makes me want to cry. Most people do their best each and every day to manage their disease, yet there aren't any promises.
The night after watching this girls video I had a nightmare. For the first time EVER, I was worried about myself. Most days I dont even know my Diabetes is there. I get lost in caring for Maddison's Diabetes. I dont have enough in me to worry about two of us. I've always felt confident that because my A1c's have always been under 6.3, that I could never possibly have complications. Now I wonder. What if? Out of nowhere this dream hit me. I was in the same Dialysis clinic I used to take my Dad to, only this time I was the patient, and I was completely alone. I remember feeling alone in my dream, and then I woke up.
I keep thinking about that dream. I can't get that girls video at the JDRF breakfast off my mind. All I could FEEL today seeing Maddison's PURPLE ketone strip, was that I'm failing. So now my mind runs wild. Its nearing midnight. I cant sleep and I'm waiting for the next blood sugar check so I can go to sleep. The hotel room is quiet. I can hear the ocean waves outside the window, yet I dont feel so peaceful. Some days I do, but tonight, even on vacation, I dont. Oh how my mind needs to quit running wild!!
Moving my blog again
6 years ago