I finished reading a memoir last night about parenting a child with a rare and fatal genetic disorder called Metachromatic Leukodystrophy. (It’s called Harnessing Grief by Maria Kefalas and it was a good read.) Her mom described being told very flatly by a doctor that her toddler daughter had a progressive degenerative disorder and she was… Continue reading To Tell The Truth
Tag: Complex Early Onset SPG4
Hot Potato
Yesterday I watched a documentary about The Wiggles on Amazon called Hot Potato. I had lost track of The Wiggles after about 2009, when Sarah moved on to The Doodlebops and other obsessions. The Wiggles remarked in the documentary that their fanbase turns over about every three years, as young children age out of toddlerhood. I had… Continue reading Hot Potato
Assisted Ballet
Sarah lost skills gradually and slowly over time. We didn’t really think about the fact that she couldn’t do some things she used to do, it just was something we accepted. For a couple of years she was able to take little steps while wearing her harness for assisted ballet. Then, she couldn’t do it… Continue reading Assisted Ballet
Just in Case
Max and I are watching a new show, “Godfather of Harlem.” We like it a lot, and I especially like the song that plays at the beginning over the credits sequence, Just in Case by Swiss Beatz, Rick Ross, and DMX. The chorus makes me cry a bit sometimes. It goes: Open up my window… Continue reading Just in Case
Cookies and Cream
Starting from when she was very little Sarah was given injections of Botox to help with her condition every three to six months. It wasn’t a cosmetic procedure. Botox apparently works by freezing certain very localized muscle groups where it’s administered and then it somehow helps to “unfreeze” the muscle groups next to them. It’s… Continue reading Cookies and Cream
Bumpers
Buzzfeed helpfully offered a quiz this morning to help me figure out which psychological complex I have. The results were not exactly earthshaking. I have a Guilt Complex which includes “feelings of unworthiness” and a tendency to “put others needs before my own.” I need to develop self-compassion and prioritize my well-being, etc., etc. Okay,… Continue reading Bumpers
Comfort Inn
When Sarah was six years old and younger, our area experienced regular power outages during storms, especially winter snowstorms. Washington D.C. isn’t exactly known for its rugged response to the weather. The government and the schools here have traditionally closed at the drop of a hat, sometimes even pre-emptively closing or announcing a delayed start… Continue reading Comfort Inn
Raisin Bagel
Yesterday I found myself craving and eating a lot of carby food in the middle of the day. A big bowl of popcorn. A raisin bagel. Pretzels. Not sure why. It was a deviation from my “healthful way of eating” that I’ve been on since January (although I did take a break during our trip… Continue reading Raisin Bagel
Superheroes
I’ve been looking through more of Sarah’s writing recently and really enjoying it. Sarah featured Max and me in a lot of her stories and non-fiction pieces. Emily, her tutor, mentioned to us at the Shiva that Sarah would usually present us as superheroes in her stories. We were high status for her. Sarah wrote… Continue reading Superheroes
George Washington Bridge
My Dad is coming to visit us again in a couple of weeks. He’s thinking much more seriously about moving into a particular assisted living community, one fairly close to Max and me. So far Dad and I have been on two rounds of tours of such facilities, one in August in New York near… Continue reading George Washington Bridge
The First Year Without Sarah 