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: 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
De Novo
I was re-reading some online articles from Pub Med yesterday about Sarah’s disorder. The first few articles from around 2019 and 2020 that recognized a cohort of kids like her and started using the name Complex Early Onset SPG4 or De Novo Early Onset SPG4. Before that we had only been told she had an… Continue reading De Novo
Compensatory Routines
I was thinking about some random doctor we saw sometime over the years with Sarah for an evaluation. Don’t remember why, who, where anymore. I just remember a brief squib of conversation with her about Sarah. She was asking questions about Sarah’s development, and as always we were saying that Sarah had great social skills,… Continue reading Compensatory Routines
Comfy Chair
I hate hearing that old prayer “If I should die before I wake, I pray the Lord my soul to take.” Why should kids have to worry about dying during their sleep? Sarah did not like to go to bed, and even though she took naps for years, until about age 11, and definitely needed… Continue reading Comfy Chair
Underdog
Yesterday evening I had something of a meltdown and by bedtime I was pretty tearful and upset. We have a shelf in our living room devoted to Sarah’s ashes and the purple urn we selected for them. The ashes aren’t actually in there, they are still in the box that they arrived in, because we… Continue reading Underdog
Project Linus
A friend messaged and said she had a bunch of jigsaw puzzles she could send me if I needed puzzles. It brought me back to a few years ago, Early and Pre-Pandemic when I was doing 1000 and 1500 piece puzzles pretty regularly. It was my obsession slash compulsion for a while, and then it… Continue reading Project Linus
Fantasy Children
I started watching a documentary yesterday on MAX (yes, we finally are able to get it) about a young Ukrainian girl with disabilities who was adopted by an Indiana family who then gave up on her and basically tried to dump her in a strange town without any resources. It’s called The Curious Case of… Continue reading Fantasy Children
Group Think
I slept until after 5:30 am today, which is great for me. I always seem to sleep longer and better when Dad is visiting. I’m not sure why. Maybe some worry or angst is alleviated that all the people (and animals) I need to keep alive are under one roof. I also talked to Dr.… Continue reading Group Think
Pool Party
Dad is back at our place for a few days to oversee the renovation of his new apartment at the Place Where He Is Moving To, and we will have lunch there and meet some other residents. Dad is really looking forward to meeting people and getting involved in the groups at the PWHIMT and… Continue reading Pool Party
The First Year Without Sarah 