I still get a bit of a shock and a disappointment when I look at the photos on my iPhone and realize there are no new photos of Sarah. There are photos of the trips Max and I have taken since Sarah died, but I’m not a big photographer. Most of the photos on my phone were… Continue reading Multiverse
Tag: SUDEP
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
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
Last Summer
It’s July. Last year Sarah was in camp for a couple of weeks after school ended and then went to Extended School Year classes for most of July and the beginning of August. She saw the new Minions Movie with us and Daniel and loved it. After that there was about three weeks until school… Continue reading Last Summer
Open House
Now that it’s the first week of July, we are almost practically about to be on the cusp of the first anniversary of Sarah’s death on August 18th of last year. It seems like things are getting more depressing in some ways the closer we get to the anniversary, which makes me think of the… Continue reading Open House
Cancer
Max and I have start re-watching “Breaking Bad.” We are on the first season where Walter has cancer and is desperate to try to find a way to pay for treatment and also leave his family financially secure if he dies. As we watched scenes of Walter in chemo and radiation clinics, getting his doses… Continue reading Cancer
Balance
It’s 3:16, I’m up, and mulling. The dog woke me up, but I’ve been waking her up early so much I can’t really blame her. I was having a dream about being in a car rolling down our street with the emergency brake not working. (Do people even use emergency brakes anymore? Do they come… Continue reading Balance
Viactiv
Max put some videos on my computer that he had of Sarah. They are mostly of her as a very small child. Our neurogeneticist used to ask for videos sometimes of Sarah doing this or that thing, so he could present Sarah at grand rounds at Kennedy-Krieger. We were not big camera and video parents.… Continue reading Viactiv
Magic is the Moonlight
Last night I was brushing my teeth, getting ready for bed, and while I was brushing I studied the decor in our upstairs bathroom. We live in a 1941 colonial with three very tiny upstairs bedrooms and one small upstairs bathroom that I guess you could call Art Deco. It’s got yellow and black original… Continue reading Magic is the Moonlight
Clouds
Sometimes I wonder if I should play the Dead Child Card more and just take a break from responsibility for a while. Just excuse myself from having to wear clean clothes, brush my hair, exercise and eat a balanced diet, because I have a Dead Child, you know. Why would I be able to function… Continue reading Clouds
The First Year Without Sarah 