I haven't really posted here because I find it frightening to expose myself this much, to be this vulnerable and open. As things have unfolded in our lives over the last several weeks, I find that I want to get over that. I want to find the raw, vulnerable, honest writings of parents like myself, of families struggling with questions of life and death, and they just aren't out there. Not the ones that speak to me. So from here on out, I'll try harder to create one, in hopes that it makes someone else feel less alone.
Right now I struggle daily with the constant push and pull between what constitutes aggressive care and what one calls a "natural death". I don't want to lose my little girl. I want to fight, and keep her with me, but I have to be honest and ask myself what I think she has ahead of her to keep fighting for. More blisters, more pain, more chronic, non-healing wounds, more disfigurement, more exhaustion. Then cancer, amputations, and death. I don't have a crystal ball. I have no idea how long she might have before her quality of life leaves no question as to which direction we should take. She says that she still wants to fight, that she wants to live, at the same time that she refuses all the interventions that give her the best chance of that happening. But what do I expect? She's fifteen years old. What fifteen year old girl is going to say "I give up"? So how do I know? Which thing does she really mean? Do I try every possible intervention within her very clearly defined parameters of no needles, not prodding, and no hospitals? Do I stop mixing new ointments, giving supplements, pumping her full of vitamins, stop everything but enough food to keep her from feeling hungry and her pain medication? I don't know. I DON'T KNOW. And that's what keeps me awake every night.