The other day, I caught Laura's post over at Houston, We have a problem. Before I start in on my post for the night, I just want to say...I don't know the PWD blogger that's causing all the problems and I have no clue what the original post said other than what Laura shared. But...Laura's post caught at me and hasn't left my mind since. I have some things I want to say about the difference between being a PWD (person with diabetes) and being a parent of a CWD (child with diabetes). Those two things are worlds apart!
There are a very few people in the DOC who have seen both sides of this coin. It gives us a unique perspective and a whole lot more understanding of what diabetes is and what it is capable of doing to a person. I was diagnosed when I was 9 years old. I was self-managed from the very beginning. I cannot recall a single instance when my mom tested my blood sugar or administered an injection. It was all me. I'd spend a year and a half before dx watching two of my older sisters deal with the disease. I spent 22 years taking care of my own diabetes, through puberty, teenage rebellion, college, two pregnancies, and just day-to-day life. And yet, all of that experience did not begin to prepare me for the choices I've had to make as a parent of a CWD. Prior to Lily's dx, I was completely ignorant of how difficult it is to manage this disease in a small child. I had no clue and could not even begin to comprehend what it was going to be like after Lily's diagnosis. When she was diagnosed, I said all the stupid things....
At least she was diagnosed young and will never know life any different. Yup, she'll never know a life without diabetes. But, she'll also only know a life where growth spurts are potentially fatal. Who could possibly have imagined that a teeny tiny little diabetic, when not checked in the middle of the night, could have a blood sugar of 28 because her little body is using every last bit of sugar to help it grow?
Another thing I said...at least we can get her on a pump ASAP and it'll be a little easier to manage. There is no managing diabetes when the person who has it is so tiny! I had no idea that at this stage in Lily's life, "managing diabetes" doesn't happen. It's all about damage control and response. If she high, you give insulin. If she's low, you give sugar. But, what worked well one day won't work the next. Her body is constantly changing and so are its responses. Having a pump does not make it easier. It means more finger pokes, more invasion of diabetes into Lily's life. It's a whole lot more work and a lot more stress. For us, it's worth it. For another family, it may not be what works best for them and their lifestyle.
Oh, here's a good one that I heard a lot from people....At least you're already familiar with diabetes and will know how to manage it for her. Yup, I know diabetes very well. I know my diabetes like the back of my hand! But, that's my diabetes. My diabetes is not that of a tiny little girl. Very, very different. And to be honest with you, I think being diabetic made things a whole lot harder for me in some very significant ways. I didn't understand that I couldn't control Lily's diabetes perfectly. I was really hard on myself and beat myself up over my inability to keep her numbers perfectly within range. I didn't understand how I could fail at this. It took me a bit longer to figure out that I wasn't meant to be in control, I was meant to be correcting whenever I could, however I could.
Those few things are just a sampling of how difficult it is to go from a PWD to being a parent with a CWD. There are so many more differences. Diabetes is definitely not the same in a small child as it is in an adult. PWDs have no clue of how different it is unless they are blessed with a CWD. And I truly mean that "blessed". You see, before Lily was dx, I probably would have been judgemental of parents of CWD. I probably would have thought that I knew a whole lot more than they did because I've lived life as a diabetic. And the truth is...PWDs are completely ignorant! Until you have a CWD, you can't possibly have a clue what it is like and how it should be handled. The truth is that we can only figure out how best to handle our own diabetes. Because it's different for everyone and it's different at every stage in life. And honestly, ignorance is not something to be ashamed of. Ignorance is fine as long as we acknowledge it and try to pursue to correct it whenever possible. Judgements...that's something to be ashamed of. Calling a CWD a "pussy"....most definitely something to be ashamed of! And something to get down on your knees and beg forgiveness for! Our children, with their callussed fingertips, the few hundred thousand needle pricks, and their love of life and activity, are so much braver and more courageous and inspiring than the people calling them "pussies" could ever hope to be!
My confession for the night....I'm a complainer. Horrible complainer. If something is wrong or I feel off or unhappy about stuff, I complain. It's a sort of venting for me. I complain and get the unhappiness out of my system and then I work to try to correct it. My last post...that was a venting. I was feeling trapped and needed to get it out of my system before I could work at getting some time to myself. I complained, then talked things over with my husband (who reads my blog when I tell him he needs to) and then took off for an evening to myself. I wish I weren't such a complainer, but sometimes, it just needs to come out so I can move on!