Emma is starting not to understand why she needs needles all of the time. The more she is learning about what has happened to her the more she doesn't know what is happening to her. This in itself tears us to pieces.
I have not yet seen her wake us up in the morning with a huge smile on her face holding her NPH in one hand and her rapid in the other while her syringe is in her mouth asking us to please give her insulin because she needs it for energy and not to feel yucky. Or dropping everything she is doing because she wants to come over to us and have us give her a needle.
Shit. Instead we are convincing her to settle and without struggle to take 5 seconds out of her day to dose her. It is getting harder and harder by the day to dose her. As much as the dosing is like clockwork so is her little excuses and evasiveness. FUCK.
The very worst moments of our lives can come at times when we finally convince her (on the verge of losing our Patience) to receive the injection, finally settling into her deep breathing, picking a site, and holding still. But dammit to all hell. That is the one that hurts her. That is the time she runs away from us. To her time out spot. Not wanting to have anything to do with us. Mom is crying at this point. I am crying. Emma is beside herself. Anna's face turns to a gleaming smile to a serious "knowing whats going on" kind of look.
Emma is hurt. Her skin hurts. Her yucky cells hurt. Full fledged tears.
As much as people ask us how we are doing and how Emma is doing with it all. We smile and say its good and go into our prefabricated "as long as we watch her, and she exercises, eats well..etc..everything is OK" sort of thing. It still fucking sucks.
I wish she could have had 6,8,10, or 14 years without this.
A break. A break. Give us a break for a year, a month, a day. An hour.
I will be better tomorrow.