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.
4 comments:
I know. In fact, as hard as your choices are about this, it's also very simple. You absolutely have to operate within the strict boundaries she outlines, because she deserves the respect. You must also push her to expand those boundaries when you can do so without creating tension between you two, because she deserves to be fought for. And you must fight with every new ointment or prayer you can think of that doesn't defy her wishes. This is because she deserves a train pushing her to live, because she still smiles and enjoys her time, however painful it is or will be. Most mostly, this last is for you. Because when it doesn't work anymore, you CANNOT have to look in the mirror and wonder if you let her die, because you don't deserve the life that comes with that question.
Im so sorry for your heavy burden. I think of Cassie each day. You are not alone.
You are very brave to speak up. I wonder about the value of (my) life and living as a burden. The questions happen.
She wants to live but she wants to live ion her own terms. She wants to fight but she wants to pick her battles. As hard as it is for you, you're doing the right thing by letting her make those decisions for herself. You're a great mom and she is lucky to have you.
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