It’s Valentine’s Day and I have to mark it with something special for my girly-whirl. Of course, Max will be appropriately celebrated too. I bought them both cards, and for Sarah, a little balloon from Five Below, her favorite store, that says “I Love You.” If it were a normal V-Day, we would meet Sarah’s… Continue reading Love Sarah
Tag: special needs child
Lucky
There’s a way I have of looking at my life story where I seem to give myself a kind of downer presentation as the Bad Luck Kid. That I’m always kind of unlucky. That if bad things happen, that if someone got the goose egg, it was me. This way of ruminating on my life ends up… Continue reading Lucky
To Tell The Truth
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
Build-a-Bear
Sarah’s birthday is coming up in February. To be truthful, Sarah’s birthday always caused me a lot of anxiety, because I worried so much about whether other kids would show up to her party. She still wanted a party long after other kids had aged out of birthday parties with cake and activities. For instance, in Fifth Grade,… Continue reading Build-a-Bear
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
Screen Shot
For several months I really felt I had nothing to offer my readers and I was pretty determined to stop writing permanently. A couple of days ago a little voice in my head made me decide to go back. Why? I’m not sure. At odd moments, I smell the most intense floral scent. It is an intense scent, like… Continue reading Screen Shot
Hopkins
I have to take my Dad up to Johns Hopkins today, to the main hospital, for a scan. It’s going to pretty much take up the whole day and I’ve arranged to take off work. It’s a bit of a drag because, well, waiting around a hospital is never a whole lot of fun and… Continue reading Hopkins
Louis
A woman posted on my parenting chat forum (where all the posts are anonymous) about her difficulties accepting an unexpected disability in her four month old infant. She posted about a month ago, and I just saw her post, so I guess the baby is around five months old now. She was a little incoherent,… Continue reading Louis
Life Expectancy
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
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
The First Year Without Sarah 