“How’s Em doing?”
It’s a question I’ve received from many of you recently. I suppose it has been a while since I’ve written a new story about her. Part of the reason I haven’t is that there’s been less drama in her life. And stories usually need some sort of drama to be interesting to read.
For new readers, Em is my daughter. She turned four back in June.
When I say there’s been less drama, I mean fewer life-or-death situations like during the first few weeks of her life or even just some challenging moments at home. How she interacts with the world hasn’t changed all that dramatically from a year ago. She still can’t talk, can’t walk, and she hardly eats anything by mouth. We also still haven’t figured out the best treatment plan for her rare form of sleep epilepsy. And her cerebral palsy is a lifelong disability that isn’t going anywhere.
Oh, but she does still love music and she’s more tolerant when we add new songs now. She even likes when I play along with Bo Burnham’s song “That Funny Feeling” on my acoustic guitar. I’ve snuck in some songs into her playlist from David Bowie, Bob Dylan, and even Childish Gambino. My mom also loves finding new songs for her and she recently emailed us a list of like 25 songs to add. You can check out Em’s Spotify playlist below. There’s some good stuff in there.
Oh, and she’s also obsessed with Sesame Street. Well, one and a half episodes of Sesame Street at least. She’s all about “Elmo and Friends Find the Best Pet”. It’s got catchy songs, including one about the letter B from none other than BB King, naturally. Then there’s “Elmo Writes a Story”, which she’s good with up until Aaron Neville starts singing about how he wants to visit the moon but doesn’t want to live there. I mean, I don’t really blame her. It’s an odd premise.
Oh, I should mention she started preschool recently. We pulled her out of school last year due to a COVID scare. But now she’s vaccinated and we feel more comfortable having her in a classroom full of rambunctious, unmasked kids. Her special ed class was moved to a different school across town, which we weren’t thrilled about since we could easily walk her to her old school last year. The new school is only a block away from my Mom’s house where I typically work during the day, so it could be worse.
Oh, the best part is that her in-home nurse was hired by the school district, so Em has someone we know and trust with her every day. She’s the only kid there with a physical disability so she requires one-on-one help. It was such a relief. I can only imagine it must be comforting for Em to have a familiar face there in the classroom too.
Oh, and there’s a little boy in her class that comes up and says hi to her and gently touches her feet, which is just about the cutest thing ever. It made me realize how much connection Em has missed with kids her age since we’ve had to be so careful with COVID, which has been around for over half of her life, which is crazy to think about.
Oh, then there was the feeling I got when Allison brought home Em’s first drawing from class. It’s really just a few crayon scribbles on purple construction paper. She can’t hold the crayon herself, so we have to affix it to her hand with a rubber band. But it was less about the drawing itself and more about what it represents for me. It means the beginning of a new chapter in her life. In our life. It means that she’s growing up fast. At four years old, she’s the same age now that my stepdaughter Sara was when I first met her. Now Sara’s thirteen. It’s hard to imagine what Em’s life will be like at Sara’s age. I find myself thinking about it and then distracting myself with something else like Twitter or a YouTube video or whatever. It’s hard to picture what her future looks like. I have more questions than answers. At the very least, I know that we’ll always be there for her. And we’ll always do what’s best for her. I guess at its core that’s what parenting is all about.
Huh. It’s weird how writing things down gives you perspective on them. Funny how that works.
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Loved this one, thanks for sharing the life updates Lyle. ❤️ The part about the little boy that touches Em's feet got me good.
I find it funny (coincidental) that we have the same name, diagnosis, and taste in music. Our sisters also have the same name! My CP is much more stable now that I'm grown up. I won't say it gets easier, but it does get.... more familiar.