Tag Archives: progression

Redemption Song

I miss my handwriting. I miss doodling on the margins of a page and filling in the answers to a crossword puzzle and sending a thank you note and making lists. I miss dancing and real hugs and opening doors and swinging my legs over the side of the bed and putting my feet on the ground.

Last night Scarlett was in my lap reading herself a book. Her hair is down to the middle of her back and it ends in rings of gold. All I could do was look at that glittery hair against her little brown back. My hands won’t even rise high enough to touch her. It is heartbreak. I want to hold her so much that my stomach hurts and I feel a quickening in my chest. I have shed enough tears over this to generate my own weather pattern, and still my body won’t accept the fact that it can’t reach for this person it created.

I am becoming increasingly breathless, and my tongue is twitching inside my mouth as if electrified. It is horrifying to watch, just one more muscle growing weaker and caving in, the whole thing looking like a worn down soccer field full of divots waiting to trap an ankle and snap it. I can still talk, still swallow. But my whole body is tired, and my brain races with ideas that I could never realize.

These are true things. But there are other true things that are significantly more uplifting. Read More>

The Way Things Are

As a family, our morning routine needs work. Yesterday was the first day of kindergarten, and despite our efforts to arrive early, we did not even manage to arrive on time. Scarlett wears a uniform, I had planned quick and easy breakfast options, Rob was up early to shower. But it didn’t matter, because, not to be dramatic, everything takes us forever.

Today we actually had to wake Scarlett up for school. This child has never had to be woken up for anything, but we were told that kindergarten can be exhausting, and that appears to be a true story. She rolled around for a few minutes before springing out of bed, ready for another day. Oh, to wake up like that. She then proceeded to eat two pieces of toast and a banana as though it were a three course meal that she was reviewing for The New York Times, by which I mean sloooowly. I know we’ll get the hang of this, and I really don’t want to stress her out, but watching someone get ready at a snail’s pace turns out to be one of my least favorite things.

On the plus side, the first day of kindergarten was fantastic. She may have been the last kid in the class, but it was a mellow morning and no one seemed to mind. It was a half day, only three hours long, and Rob and I attended a parent orientation meeting after dropping her off. I spent the rest of the morning sitting outside, getting to know other parents, before it was time for early pickup. Scarlett was disappointed when it was time to leave, which I consider a very good sign.

Chatting with the other moms and dads felt so normal. I really liked everyone and I felt like we were going to be part of a great community. As we left, I was tired but definitely in high spirits. Things are good.

But things are hard, too. Read More>

More Progression

Nearly four years from the onset of symptoms, my ALS progression continues. It is impossible to ignore. Lifting a fork or a spoon to my mouth is a huge challenge, so much so that I can feel my days of comfortably dining out coming to a halt. Being hungry and struggling to eat is extremely frustrating. Doing it in front of strangers does not add to the fun. I am now a two-handed eater, supporting my right wrist with my left hand, and still spilling often. I swear I used to be a graceful person, but now there’s an earthquake inside of me, shifting and shaking in ways I can’t control.

My fingers feel stronger than my arms in some ways, but then I try to get my contacts out, and it’s basically just an exercise in hope. Hope this works, hope I don’t stab myself in the eye again, hope somebody comes up with something soon to get some strength back in these hands before I have to consider eye surgery on top of everything else.

I’m not opposed to eye surgery. It would certainly make things a lot easier. But maybe I should just wear my glasses. [Immediate flashback to 3rd grade and a giant pair of purple glasses that covered my face. Then braces. My awkward years were extensive. Character building?] Read More>