In 2 days in will have been a month since we've been pumping insulin. I think back to how things were before that and I can see the changes...the differences are so blatantly obvious...it's like a smack right in the face. Before pumping I thought that the pump would be this magical thing. I thought that it would solve all of my problems in managing Emma's blood sugars. I thought all I would have to do was get her past the fear of the infusion set needles and we would have smooth sailing from there. I thought that it would control her numbers better than I ever could and it would be the answer to my prayers.
I now know that is really only partially true. I now know that the pump is simply another tool for me in my battle against those numbers. It's not really "against" those numbers I guess...it's more in controlling them...making things happen so I can get that magical balance of perfect. I know that will never happen...perfection...it's a lofty goal, and it will never actually happen, but I still hold on to the idea of it. I hold on to that hope and strive for that goal day in and day out even though I know in the back of my mind that it will never happen. What will I have though if not for that goal? What would I have to hold on to every day as I manage this disease that tries to rule my daughters life? What would I have to strive for? To hope for?
I think that is the one thing that still bothers me the most after these almost three years....the fact that it is never-ending. Diabetes is relentless and beyond my ability to master. The majority of people out there in the big bad world really have no concept of the magnitude of this disease. They think it is just a matter of not eating sugary foods anymore and exercising. They believe that if I check my daughter's blood sugar before she goes to bed and it's a good number, that it will stay that way all night. They don't see the sleepless nights or the worry. They don't understand why I always look so tired. They don't know that I get up in the wee hours of the morning to check on her blood sugar and make sure that everything is in an ok range...just so I can be assured that when I go to wake her up in the morning, that she will actually still be alive. That is probably one of the hardest things for me still. I know in my head that people will never understand unless they live it every day...but in my heart I usually feel so alone in it. I feel different and in a category all by myself.
I read blogs and posts in diabetes groups. I read stories of parents taking their diabetic children swimming or to parties. I read of how they too are dealing with the ignorant masses. I know that they are living mirror images of my own life, so in fact I'm not alone. It's a difficult life....life with diabetes.
I have gained a little comfort though in the fact that we now have the pump. It is not a magical device that has given me leave from my duties as a pancreas. It needs me as much as I need it. We work together to help ensure that Emma gets to lead a "normal" healthy life. So, even though I know my cohort Jumanji (Emma's pump...lol) and I will probably never reach that goal of perfect blood sugar numbers...we will still keep on trying...one step at a time.
As a side note, I just wanted to share that last night I finally finished writing my book. Now that I am done, I feel ok about calling it that...a book. It is probably one of the biggest and most important things to me that I have ever accomplished. As the Queen of Procrastination, I never thought I would actually finish it...but I did.