“To the right mind, no time exists other than the present moment, and each moment is vibrant with sensation. Life or death occurs in the present moment. The experience of joy happens in the present moment. Our perception and experience of connection with something that is greater than ourselves occurs in the present moment. To our right mind, the moment of now is timeless and abundant.”
― Jill Bolte Taylor, My Stroke of Insight
How does a person write about a highly-medical experience — full of trauma and technical language and crucial background information — without overwhelming the reader or, conversely, over-simplifying? This is a question I’ve been asking myself as I write the book-length story of my daughter’s misdiagnosis and path to full health. In a story that contains a fair amount of medical terminology and more than a little of my own hand-wringing, I don’t want to lose my readers to confusion or sappiness.
To that end, I’ve been trying to read other books with similar angles. These range from the stories of doctors to the stories of patients to the all-too-few stories of other parents. Some of these books haven’t been quite right, but several have given me flashes of what I need. All have taught me things about myself or, in retrospect, things about what my daughter might have experienced. I’d like to cover some of these books in blog posts here on my site, both for my own reference and for my readers who also write about medical conditions and want to see how others do it. I’ll start with two and include others in future posts. Please feel free to comment with suggestions of your own; I’m always interested in reading more. Continue Reading…
This last week of summer vacation, my daughters are redecorating the basement.
They are thirteen and sixteen, past needing space for a vast collection of magnetic princesses and plastic animals, the dollhouse closed up and stored beneath the stairs. The collection of pony puzzles and foam building toys and inexplicable plastic parts from birthday-party-goody-bags have been sorted, donated, stored or thrown out. Elmo and Dora the Explorer are long gone. What remains is a small enough collection of things that the basement — home to all things daughter for a dozen years — is ready to become a teenager hangout. They are planning it themselves.
Like many projects, this was supposed to be an all-summer-long plan, but here we are in the last week of summer vacation, frantically painting. I brought paint sample pamphlets from Home Depot for them, blues and reds and greens and purples and yellows. They’re the same kinds of sample cards that their father used to give them to hold while he wheeled them through the store in the oversized carts when they were very tiny, on the one day each week when he’d bundle them quickly out of the house in the early morning so I could get a few precious extra hours of sleep. They still talk about playing with the doorknobs in the store. They still remember the carts.
This week, they finally chose a light blue for the walls of their hangout. My older daughter says “It’s going to be like looking at the sky!” Continue Reading…
In the years I’ve spent as a parent, I’ve been humbled hundreds of times. Sometimes one of my daughters has a proclivity the other lacks. Other times, the health challenges of one make me see the relative good health of the other as anything but a given. Most often, though, I am humbled by the ways I see the challenges of other children and families. The things I took for granted always, always, reveal themselves to be as symptoms of my own ignorance. I could make the list below almost endless, pages and pages of gifts that no one is guaranteed but that I — somehow, luckily — was given. I will never take them for granted again. Never. Continue Reading…
When my children were five and almost-two, we moved roughly 2 miles north. We sold our sweet little townhouse in a quiet courtyard in the city and moved to a big single-family home in the nearest suburb north. For the most part, we moved so that our five-year-old could go to a school with smaller class sizes and so that she and her non-sleeping baby sister could have their own bedrooms. Too, there was a part of me that had glimpsed at the process of looking for high schools in Chicago and wanted to avoid it at all costs. We moved for ourselves, thinking only of the life within the walls of our home and the school our kids might attend.
Until then, I’d been living a mostly isolated life as a parent. In our city courtyard, there was only one precious family with identically-aged children, but those children slept like angels — long naps and early bedtimes, short windows of free playtime compatible with my daughters’ chaos. In retrospect, it was an outright blessing and not at all a small thing to have found myself hugely compatible with their mother, someone who became one of my dearest friends and a great teacher to me on topics too great to write here. Still, in those toddler/preschool years, the company we could keep was not daily, and because of my younger daughter’s constant illness in her first two years, I’d not been able to make any other friends with other families. I spent my days largely without adult contact. It was incredibly, incredibly lonely.
When we moved north, then, I didn’t expect much of my life to change. The preschool where my youngest was finally healthy enough to attend was part of a day care center, a remnant from my days of working when my oldest was my only, and so I never knew the other parents well. No one stuck around to chat long — everyone was at the beginning or end of long days, and if I saw them, it was only on the rare occasion that I brought my youngest to preschool at the very beginning of the day or picked her up at the very end. For the most part, I saw the teachers, the barista at the coffeeshop, and my husband. When I moved, I expected that to stay mostly the same.
Several weeks ago, my triumphant, thriving, sensitive and sweet daughter Sammi read from the Torah for the first time.
In the Jewish ceremony known colloquially as a “Bat Mitzvah,” my daughter consciously took her place in her community by chanting three verses of a chapter from Leviticus. Like all children who become a Bat or Bar Mitzvah (literally, a daughter or son of the covenant), she studied for months to learn the melody and the Hebrew words she’d be chanting and all the prayers she’d need to know to share leadership of the service and analyze the chapter of Torah in English. She has a lovely, clear voice, and she spent weeks with headphones on listening to the sound of her tutor’s voice chanting her verses, and singing along. I’d heard her practicing, but nothing really prepared me for the feeling I would have on the day she became a Bat Mitzvah, as I stood next to her at the podium as she chanted in front of the congregation of our synagogue and all of the friends and family who gathered to bear witness. It was not what I expected. Continue Reading…