My little dragon, Inara, started her second EMU (Epilepsy Monitoring Unit) at the hospital today.
River helped drive Inara’s wheelchair into the hospital and then kissed her little sister goodbye. (Inara looks a little alarmed at the goodbye kiss.)
Getting all wired… The initial EEG hookup. Jessica, my lovely wife, turned on heavy metal music on her smartphone for Inara, because there is nothing in the universe Inara finds as relaxing as Disturbed’s “Down with the Sickness.” I find classical piano relaxing, personally, but my three-year-old daughter loves metal, and metal made the experience of attaching electrodes to her head soothing to her…
During the second hour of the process, Inara’s music therapist visited. Inara was remarkably calm and patient throughout the process, which takes nearly two hours. The music helped.
Inara had two seizures while we were first wiring her. She is now exhausted, but very brave.
On her music therapist’s tablet, Inara is making colors and music. With her toes.
Hooray for the age of apps!
My beautiful Jessica is saying goodbye for the day to Inara. Jessica suffers from fibromyalgia ( chronic nerve pain … essentially, imagine your skin feeling scorched everywhere on your body, most of the time), and we have our bed at home especially softened for her. So when Inara has a stay in the hospital, Jessica goes home at night with Inara’s older sister River, and I man the fort here at the hospital, read Inara stories (maybe The Silmarillion or The Lord of the Rings, or my own fiction, or even The Iliad, whatever I have at hand: the bloodier the story, the more Inara appears to love it), hit the red button if she has a seizure, and mostly celebrate how brave and feisty my youngest daughter is.
See what I mean? She-Hulk is mad and she’s not going to take it anymore. The epilepsy safety pads are coming down! There she is, wrenching at them.
My Inara may not have it easy, but she is strong.
By the way, if you’re one of my newer followers, you can read Inara’s story here: http://stantlitore.com/2014/06/02/the-story-of-inara/
You can support Inara’s journey, father and daughter, storyteller and muse, here: http://www.patreon.com/stantlitore
Patreon, where fans subscribe to my fiction, is also a significant part of how I keep little Inara’s care well-funded. (And if you know my creative work, then you know how closely connected my fiction is to Inara’s journey… lots of father/daughter stories…). I hope you’ll come check Patreon out and give us a hand. It’s a new and beautiful way to support artists, musicians, or writers you admire.
I also owe a deep debt of gratitude to my church family and to my workplace, where everyone (supervisor, team, colleagues, everyone) has my back — that is a rare and beautiful thing.
I see Inara is now trying to seize and gnaw on a cord, despite sitting in a rather cage-like hospital bed. Have to run! More updates later…