ALS Dan Toch

Filled with little wonders, this first week.

Her age is measured in seconds and I manage to keep myself from fainting – just barely.

Her age is measured in minutes and she is lying on Iris' breast. I want to touch her white little arm but am afraid to, afraid that it will be too much, that something inside me will burst if I do. Shortly thereafter I feel her naked warmth on my chest and it's the best sensation I've ever had. I use a lot of superlatives but this time it's very simple: it's the best sensation I've ever had. A little later they come to draw blood from her and I realise for another very small fraction that she has her own blood, that she is her own human.

Her age is measured in hours and she is asleep on my chest again. She is dreaming, her eyes move beneath her eyelids and I see the emotions fly across her face. What is passing through her minds eye? Something serious, something funny, something to get angry at, something to wonder at, something tasty (breasts!), it al passes by in just a few minutes.  

Her age is measured in something between "this many hours" and "this many dayparts" and her lips and tongue flawlessly locate the nipple, right through the t-shirt. She begins to suck and faces one of the first disappointments in her life: a man. No milk to be had from my breast, sorry. I laugh like I'm on drugs – perhaps that's the hormones? Iris takes over and gets to work. Every young dad feels useless and powerless; perhaps this is why I have coveted breasts for so long? Iris's deserve an eleven by now.

Her age is measured in days. I am seriously considering to never blog about anything except her, her fingers, her neck, her crooked nose, the unique sound she makes when she sucks on her hand. Every little thing she does is magic. I always got annoyed every time some young stupid parent couldn't stop talking about their stupid child; luckily this is completely different. Com-ple-te-ly different. The next day, I notice with surprise that she shares some characteristics with the concept of a baby. I wasn't thinking of her as a baby but as something unique, a phenomenon.

Safely strapped to my chest in an intricate origami of elastic bands, I have her close to me and my hands free. This feels good! I move to get up out of my chair and hear a wet whisper: "Are you sure? Is that a good idea?". No. It isn't. I halt my attempt, defeated, the room gets dark, the voice that only I can hear continues its undeniable drawling lisp: "I thought three days of happiness was enough, so… I'm here again". The age of my ALS diagnosis is a few days short of a year. Its teeth nibble my earlobe, it curls up in my lap, continues: "It's not a good idea to walk with her. I would make you stumble. I tell you what, it's not even a good idea to be home alone with her. You see, Garmt, I've made sure you can't take care of her. And I'll make you feel that. And you know, don't you, that no matter what tricks you pull out of your hat, I'll keep her from having the dad she deserves. The biggest criminals can appeal for the right to see their kids unsupervised, but me, I'm beyond appeal. The only father-daughter moments you'll ever have will be through the mercy of others helping you. She'll only get heavier and you'll only get weaker. And now, I'm going to make you feel how love hurts." And I cry, I wail. Pain in my chest. I don't want to cry with her this close but this is too much for me. God, this hurts. So bad. Today is the first day that ALS hurts, gives me pain. So far, it was annoying, irritating, infuriating, interesting even, tiring, bruising, demoralizing. Today it hurts, in a way that no song or poem can describe. I don't even have energy or room to get angry or be mindful of my pain.

That takes a while to clear up.

Next day. Iris feeds her milk and I feed her music. A few hours each afternoon, as she snoozes on my belly, I play her some Steve Earle, some Black Keys, a bit of Bonnie Prince Billy, even that forgotten Springsteen album "Devils and Dust" (I cover her ears for the second track), a quirky CD by The Notwist, a country album Ben Harper made with his mum. Now, Aloe Blacc sings "Who can help me take away my sorrow / maybe it's inside the bottle", as I feed her. He's right; I am smiling again. Inside that bottle is Iris' milk, that I am also feeding to our daughter. Spirits are high again, but damn, that was a rough day, yesterday.

I go in to work for a half day to talk about the fund and evaluate eye tracking stuff (a post like this takes three days to type). I shame myself; it feels so good to be in the office again and experience some old productivity that I miss my opportunity to give her the daily bottle. That's a mistake I won't make often… She changes every day and I don't want to miss any of it.

Her age is measured in weeks; 1,05059 weeks at the time that I write this, to be exact. In a few hours, we will celebrate her first week-birthday; in proper style, with Dom Perignon and the last leftover piece of our wedding cake (style over substace; it's been in the freezer for two years…).

The official announcement and her name will follow soon – for now, you'll have to make do with just one picture: