Yesterday I was thinking about a special needs kid who Sarah rode the Camp JCC bus with, and the thought flashed through my mind that this girl would have to ride alone now. Then I remembered that she had died a few months before Sarah. Like Sarah she died in her sleep. This led me… Continue reading Life Expectancy
Tag: death
Badge
I kind of cried my way through the Compassionate Friends meeting yesterday. When we arrived at the meeting, we were given personalized badges that were made for us by one of the group leaders who does this sort of thing for the newish members. They are just plastic badges with clips on them, and there’s… Continue reading Badge
Trick or Treat
My mood is pretty poor these days and it makes me not want to inflict myself on an audience. When I first started this blog, I pictured turning it into a book. There would be a beginning, where I was in deep mourning about Sarah, then I would start to feel better, and develop a… Continue reading Trick or Treat
Runaway Truck
As more and more time passes since Sarah dies, it makes me feel out of control. When I see that kids born in and around 2006 are turning 17 and 18, I don’t understand how that can be. I feel like I can’t hold on to what was. I can’t keep things constant in my… Continue reading Runaway Truck
Party Pooper
Yesterday I ended up feeling pretty terrible. All kinds of grouchy and sad at the same time. What do I feel bad about? So many things, from the trivial to the poignant. Ready? Physically, I’m aging into the “grandma” years but I will never be a grandma. I don’t like looking at pictures of myself… Continue reading Party Pooper
Life Skills
Surprise! It’s me here blogging again. I did kind of disappear for a minute. I’m not quite sure why. I think I started to feel that this was a chore rather than a pleasure and an outlet. That I couldn’t live up to my early, funnier posts. Like people telling Woody Allen “I really liked… Continue reading Life Skills
Flat
Lately I haven’t felt like writing very much. I haven’t felt depressed, I’ve just felt kind of flat. Many peripheral thoughts are going through my head with no central focus. The federal government may be shutting down Monday. That means waiting and waiting to be unfurloughed and recalled to work. We will be okay, I’m… Continue reading Flat
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
Lonely Hearts Club
There’s a consistent message or saying in the “grief world” that the second year is harder than the first. People don’t give too much explanation, they just go around intoning this. Although I haven’t generally found this to be true, last night I was crying a little bit thinking I can no longer look back… Continue reading Lonely Hearts Club
Memorabilia
This morning I was cruising around Facebook and a friend had posted about her young daughter’s choice of Halloween costume. This is another girl named Hannah (it’s a popular name). My Facebook Friend said something like “Hannah passed on the princess costume and chose the Jedi costume instead” and there was a cute picture of… Continue reading Memorabilia
The First Year Without Sarah 