quality of life

I'm not sure whether I should write this chronologically, because that's not how anything occurs to you at 3:41 am.

But if I did I'd start by writing that I was talking to a friend two nights ago and telling him the gist (that's all Jen will share) of Zoe's former pediatrician's enthused words to Jen. That Jen's quality of life and the other 7 kids' quality of life and my quality of life and Zoe's quality of life all suffer as we try our hardest to extend Zoe's life.

And my friend told me that he's pretty sure that's what everyone thinks.

It stuck in my craw a little and made me want to fight my way out of that corner. So I did and told him that I doubt anyone can willfully let a plant die in their house, let alone a puppy, let alone a baby who smiles and coos and sometimes talks to her hands. And no one has given us an expiration date of our daughter. No one knows if its tomorrow, 3 years, 3 months, or 3 minutes.

But the response has stuck with me like the perfect counterpunch in a fight, especially now. It stings. Maybe everyone thinks that.

Right now, at 3:41, I am less full of fight and more full of questions and tears and doubt. Did I do this all wrong? What if everyone is thinking how I did this wrong. And your thoughts are of pity and camaraderie, but rarely empathy.

Would you have had an eighth kid? Probably not, even if you felt like God was telling you to. And would you have taken the signs I did to mean God was telling you anything? What if Zoe was more a manifestation of my will instead of God's?

Quality of life. Zoe's last seven nights have been horrid. She cries and wails and we don't know what to do. We'd ask our pediatrician but - yeah. Yeah our pediatrician may or may not give us the advice Zoe needs. Depends who you ask.

Jen's convinced the last nights have been because Zoe's heart is getting worse and we need to make a decision. She says we need to talk more about that.

Which would mean talking. Which we do, off and on, but mostly about heart surgery and bills. But maybe Dr. So and So was right. Quality of life of the marriage? Of Jen, or me, who are sleepless beyond anything we can express? Can we really keep doing this for another six months? A year or two? At 3:41 - now 3:50 - I don't know.

We ran out of water. And Zoe can't have tap water so it's 2 something and I have to get to Walmart. And all of these questions - my friend's comments - Dr. So and So's quality of life argument - it's a flurry of blows to the head, to the body. It's resonating now that I feel angrily unprepared to feed my daughter, let alone rule on her health. I don't know.

I'm working 12 and 15 and sometimes more hours at work through an incredibly demanding season. Hoping they'll accept whatever I give them with whatever sleep I'm given. Not exactly the quality of life my work's expecting.

Quality of life, when you factor in the current bills and a heart surgery and school tuitions and gasoline and feeding the tribe. Last night I laid into Izzi and Kellen about doing their chores and told them so what if you don't want to do them? In the real world, no one gives a - care. No one cares if you don't want to do something. That's not life.

Or maybe it's not mine. Maybe you're looking in and reading this and still kinda shaking your head about our nonsensical position - fight for extra days with someone who may or may not have extra days. Is this brave?

3:59. I still don't have answers. But my alarm will go off in two hours, and it doesn't give a - care. No one cares if you don't want to do something. That's not life.