Here’s the most recent news about my youngest daughter: We now have a tentative diagnosis of MMPSI (http://ghr.nlm.nih.gov/condition/malignant-migrating-partial-seizures-of-infancy) and are awaiting genetic tests to confirm. Basically, MMPSI is a random genetic mutation that causes seizures that migrate across the brain, occurring in sequential clusters of dozens of seizures, and cause brain scarring and developmental delay – exactly the story of Inara’s first six months with us. In most cases, the seizures prove impossible to control, babies don’t respond to treatment, and most don’t survive their first 16 months.
The good news is that because after her first six months Inara did begin respond to treatment, she has been gradually stabilizing and also correcting her developmental delay and learning new skills, a little at a time. If her diagnosis of MMPSI is confirmed by genetic testing, then we’ll finally have more of a story of why her first six months were so touch-and-go, and, more importantly, we’ll have the comfort of knowing that because she made it through her first 16 months, the condition is likely to continue lessening with time.
Inara’s survival is rare, and my wife and I feel very blessed. (And also thankful for the support and encouragement of my readers, of our church, and of my coworkers and colleagues who visited us during our frequent hospital stays, brought meals, and donated personal time-off so that I could stay at my daughter’s side when things were touch-and-go.) I don’t have the words to say how stressful and, at times, terrifying Inara’s condition has been. In 2012, we truly didn’t know if Inara would make it; we just believed in her, stayed by her bedside, fought for her, loved her, and tried to “keep it together.” This is also why, late at night when everyone is in bed, I write my fiction so fiercely and fast; it is a way of speaking my pain and my love to the world; it is a way of staring at the possibility of loss without flinching, a way of keeping it together:
I sat in that hospital by her bedside, in the cold of winter. It was warm enough in that carefully sterile place, but I felt cold. I felt angry. I felt exhausted, and determined. The wind that rattled the windows one night seemed to hurl against the hospital glass all the moaning horror and shrieking of the shedim.
Now my daughter is improving, and we are on the other side of that time together. Yet those nights by her bed are recent in my heart, and they hurt. I don’t know what this past year has meant, only that the love I now hold for those I call my own is fiercer than anything I have ever felt. I have learned that hope, which I had thought small and delicate like a moth in the night, can be hard as steel, a blade with which you cut your way through a press of moaning and hungry foes.
– from the afterword to No Lasting Burial
A friend of Inara’s, a beautiful little child who attended the Anchor Center for Blind Children with her and is about a year younger than Inara, passed away this summer from a condition with similar symptoms; Dahlia Blue’s seizures remained uncontrollable and eventually killed her. It was a very hard thing for my family to see—a picture of what might easily have happened with our own daughter—and it was hard seeing the grieving of Dahlia’s family.
The news today is that Inara continues to have microseizures but her condition remains controlled, that we are awaiting genetic tests and a second EMU (several-day-long Epilepsy Monitoring Unit at the hospital) to monitor her brain activity, and that Inara is learning to pull herself up to stand and even take her first assisted steps, she is starting to vocalize, and she has a fierce joy of life and a fierce desire to move about and do the things big sister can do, too. And she inspires us. Jessica and I live our days in mingled anxiety, fatigue, and joy. So far, the outlook appears to be a positive one.
There will still be challenges ahead, and not only medical ones. We wheeled Inara about in a little wheelchair on Halloween evening and were dismayed by how many people shrank away from or pointedly ignored the ‘handicapped kid,’ though our hearts rose at the way one young man bounded down his porch steps and crouched next to Inara to chat with her, and at the way her older sister River kept bringing candy to her. Jessica parks handicapped and several times each week is berated or cussed out by some belligerent stranger who, seeing my wife step from the car looking apparently healthy and able, lets her have it without realizing there is also a child with a wheelchair in the car. These are small matters, but they make me wince when I worry how Inara will be treated by others as she grows. Yet our main story is that Inara is alive and, for now, thriving and happy. She is feisty and strong-willed. Her middle name, Cahira, is Irish for “warrior.”
November is Epilepsy Awareness Month, and once a year my wife hand-crafts purple ribbons for friends to wear and makes a video sharing Inara’s story: http://www.youtube.com/watch?v=51u77VL_dfc. Each November is a celebration that Inara fought and won another year. November 15 will be her third birthday.
This post is meant to catch everyone up on the story – especially as many of you, coworkers and readers and patrons alike, were there with us back at the beginning, or have been there to offer encouragement and support since. Thank you.
My wife and I are beginning to hope that Inara is now “out of the woods.” It is too early to be sure, and we are vigilant, especially with Inara’s current microseizures. But this is certainly our most hopeful season in a long time, and this year we are approaching the holidays with a much more celebratory spirit.