Sarah Rise Weekly Updates

Sarah likes to create delicious ice cream sundaes with loads of chocolate chips on top. Sometimes she goes a bit overboard. Carl and I suggested that she use a small scoop that would help with getting a reasonable portion. Sarah proceeded to select a scoop… the 1 cup measuring cup! That is bigger than her… Read more »

We are back to in-person Sarah-Rise sessions with Sc!! These session include Amy, as they have for years. It is beyond wonderful to have Sc in person even though the FaceTime sessions were impressively effective. Last Tuesday they spent the whole time outside with sidewalk chalk, cauldrons, and brooms. Last Sunday Sarah participated in a… Read more »

Imagine if you will… I calmly tell Sarah that I have a question and if the answer is no that is totally ok and I will respect her wishes. “Could I wash your musical note shirt and pajama pants that you have been wearing for a long time? You could wear the matching shirt.” Instead… Read more »

One morning Sarah came to breakfast, sipped her hot chocolate, and said, “I’m going to heat it up a little bit. It’s not very warm at all.” I’m not sure why that was so endearing, but it was. Something about all of her little word choices that made up such a complete expression. Another day,… Read more »

We are in the midst of a wonderful in-person, unmasked visit with Grammy and Granddad! This is the first time we have seen them in person since Christmas 2019!!! I am already sad about the visit being over even though it isn’t quite over yet. Yesterday we completed a jigsaw puzzle with many cats, with… Read more »

I have been experimenting with really coming in close to Sarah when she gets upset. I don’t always have the mental or emotional space within myself to do this, but when I do it seems helpful. I verbally acknowledge what Sarah is feeling and say that those feelings are ok. Sometimes she gives a quiet… Read more »

Last Sunday night, Sarah had the first seizure she has had since being on anti-seizure medication. The first seizure in roughly two years. It lasted less than a minute and she was mostly herself afterwards except for having a headache. Her neurologist increased the dose of medication so I’m hopeful things are back under control…. Read more »

I have started reading a book called The Yes Brain by Daniel Siegel and Tina Payne Bryson. It has inspired me to think differently about Sarah and how to help her/us. It has become increasingly obvious that she really has very little capacity to hear “no” without going into full-stress fight mode. We need to figure out… Read more »

The April Fool’s joke for us was a notable amount of snow. We made a huge snow mouse that is taller than the kids, and Sarah enjoyed rubbing noses with it. Carl also got to go cross-country skiing. Yesterday Amy orchestrated a talent show and asked me to be the judge. I hate judging among… Read more »

The week has felt overshadowed by grief and loss. I know there has been an abundance of good, but I have also needed the time to just feel sad and sluggish. A college classmate died from brain cancer. A few months ago she was as well as you or I, and now she is gone…. Read more »