Last week I had a massive paradigm shift, only it wasn’t like the others I have experienced. Usually they lift my spirit and enlighten me to a point where life almost takes on a new meaning. But this one was unexpected and, at the time, it turned my stomach inside out. After deep reflection, I decided to not let the emotions be wasted and instead turned it into a learning experience. Going through this roundabout, I have taken a different exit than originally planned and I’m okay with where I’m headed.
My daughter, Aspen has been screened for type 1 diabetes markers through the INIT II Trial every year since age five. I launched my blog with a piece about her first screening. I have since written about how every now and again I am reminded that she may be diagnosed with type 1 diabetes at any given moment. Like I was. Without warning or preparation.
What I haven’t been prepared for is Aspen having her own opinion about participating in research relating to my type 1 diabetes. Even as I typed that sentence I realise just how ridiculous I sound; of course she can have her own opinion! Of course we let her have her own opinion and make her own age appropriate decisions.
These thoughts were sparked by Aspen’s most recent response to my relaxed suggestion that it’s time to order the paperwork from the brilliant team at Royal Melbourne Hospital to get her screened again. I didn’t even realise that silent tears began to roll down her rosy cheeks. My back was turned as I was preparing dinner. When I heard a little sob I rushed over to find out what had upset her. The last thing on my mind was the trial. I thought BobCat had snuck in a cheeky scratch at her leg under the bench, or something to that effect. Unfortunately I was wrong. Aspen got upset at the thought of the pain of the blood test. So I sat down with her and we talked about the entire exercise, including the three or four seconds of pain the she may experience when the needle goes in her arm. Needless to say, my bright and beautiful daughter resolved her fears and we are headed for the collection centre on Friday, Elma Patches at the ready!
My thoughts across that night and the following days surprised me on a level I’m still struggling to communicate. I made one very simple realisation. My type 1 diabetes is mine. Not Aspen’s. Not Jarrah’s. Until Paul and I think the kids are old enough to make a decision about participating in the trial or not, with a clear understanding of the impact of both options, it will be our decision. But that’s really only a decision based on their age and their developmental stage. This chronic illness that I have embraced and drawn every positive opportunity out of is mine and mine alone. I need to be prepared for my kids to not want to be a part of that journey in the future.
I have been reminded that type 1 diabetes belongs to me.
I take responsibility for it.
I make of it what I want.
No one can take that away from me.
I need to give my kids the same opportunity to make choices about their lives, their health and their wellbeing.
I am the 1type1 in my family.