Category Archives: Progression

On and Off…and On Again

Rob and Scarlett and I watched the first Harry Potter movie this weekend. I didn’t realize that it was over 2 1/2 hours long, so it was by far the longest movie she’s ever seen. I also wasn’t sure if maybe she was too young for it, because I don’t think that your average five-year-old is out there watching Harry Potter. Three-headed drooling monster dogs and a scary snakelike wizard whose evil face is coming out of the back of someone else’s head…it’s quite a step up from The Octonauts and Frozen.

But it’s an example of something I occasionally find myself doing, which is introducing her to a book, a movie, or a concept a little early just so that I can make sure I get to share it with her. We read Charlottes Web when she was four, even though I thought that might be a little bit early to deal with the themes and storyline. I think her mind probably strayed a little during the book, but ultimately she declared that she loved it, and she was especially fascinated when I started crying at the end. She brought Charlotte’s Web home from the school library this week. She wants to read it again.

Likewise, she really loved Harry Potter and didn’t seem at all afraid, and I think it helped that we had listened to the audiobook first, so that she knew the story and what to expect. When the hideous troll lumbered into the girls bathroom, Scarlett burst out laughing. Read More>

|Categories: Life, Parenting, Progression, Relationships | Tags: , , , | Permalink

The Nurse Visits (or) Sarah Goes Off on Several Tangents

I’m drinking tea and waiting for the visiting nurse to come. She checks my blood pressure, listens to my lungs, examines my stick skinny legs that lead to feet so swollen it looks like I could use them to paddle a rowboat. I like the nurse because every week for a month she’s told me she detects no change in my progression. Her focus is mainly on my breathing, so it’s always a relief to hear that my chest is clear and my oxygen levels high. She calls me “love.”

ALS is a tricky disease. When a muscle starts to go downhill, you can’t help obsessing over it, and obsessing over your breathing turns out to be a great way to feel like you maybe can’t breathe. Anyone who has ever had a panic attack probably knows what I’m talking about. It can be hard to decipher the real dangers from those that are merely in your head. Harder, still, when you truly can’t trust your body to function properly.

For now, the nurse tells me, my symptoms can be managed with anti-anxiety medication and Aleve. I take a few pills a day, when my chest feels tight, when my ankles feel like ticking time bombs. It works, so that even though my breathing remains shallow, I can always manage to stay calm—and conscious.

An aside: Why are shallow people called airheads? Read More>

|Categories: Drugs, Life, Progression, Relationships, Therapy | Tags: , | Permalink

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>

|Categories: Life, Parenting, Progression, Relationships, Vanity | Tags: , , | Permalink