So, the update. Little Inara is seizing again. We are at the point where increasing her medicines carries some not insignificant risks (specifically, to her kidneys). Before making that judgment call, we and her doctors need to be certain what is happening with her body and brain and what’s needed. The standard EEG didn’t capture what we needed to know, so our next step is to schedule a hospital stay of up to five days; she’ll be wired up with electrodes and videotaped 24/7 to catch and confirm exactly what’s happening, if we can.
Then, better informed, we can look at our options. Increase Medicine A? Increase Medicine B? Look into medical marijuana? Some combination of the above? What’s frustrating is that we don’t know what’s causing her seizures, her blindness, or her developmental delay; all our tests (so far) for genetic disorders have come back negative.
All I know is that I am her father and it falls to me to protect her, and I don’t seem to be doing that. In my head, I know that I am doing all I can. But that isn’t good enough. This is my little girl. I want her safe. She is happy and also feisty and brave. I want her safe.
Stant Litore
You can read more of the story of Inara in Lives of Unstoppable Hope.
Stant Litore is a novelist. He writes about gladiators on tyrannosaurback, Old Testament prophets battling the hungry dead, geneticists growing biological starships, time-traveling hijabi bisexual defenders of humanity from the future. Explore his fiction here. And here is one of his toolkits for writers, and here’s another book where he nerds out about ancient languages and biblical (mis)translation. Enjoy!
Just so you know, you actually are protecting her. I know it isn’t enough — nothing really is — but every moment you offer her something positive, something supportive, something safe, and something she wouldn’t otherwise have.
Do what you can, do what you must, and rest on the knowledge that you’re doing everything and more that anyone would ever ask.
Thank you, JB. I needed to hear that.
[…] my family tumbles from one medical issue to the next and my youngest daughter’s situation remains serious, I oscillate between wanting to dig a hole and scream into it until my throat is hoarse like the […]