This is the story of my wild, sweet, unexpected family. About letting go of expectations, about perfecting never-before-seen dance moves during dinner, and about getting thrown up on a lot. Also, it’s about having a Jewish identity in the heartland, during this very specific time in the world.
We live in cold, reliable Minnesota. I have two small children, my itty bitty yiddies. I love these children in a wild, mystical way which is even more awe-inspiring (and terrifying) than people make it out to be. I’m also a psychotherapist, which I love.
Our tiny daughter E. was born with a unique genetic map. That’s how we label her chromosomal deletion, on the Q arm of the 12th chromosome. Genetic counselors have told us that she may be impaired, possibly in some sort of seismic way, but there are only four people documented in the world who have this deletion. The other children who have it are heartbreakingly altered. But because this condition is so rare, there is no roadmap. How our daughter will be affected will unfold as she develops, over the hours and days and years. Whether she will eat, walk, talk, and be able to process information the way we had expected: we will see.
It seems like it’s part magic, yet backed entirely by science. That’s how I feel about the world. It very often blows my mind.
One thing is clear: my daughter’s stomach doesn’t work like mine or yours. She has a diagnosis called Midgut Neuropathy, which is a fancy way of saying that her digestion is out of whack. Basically, there’s a whole lot of vomit in our story.
I’m married to a kind-hearted man named Cedar (my nickname for him) who is a jazz musician, teacher and the best listener I know. Sometimes I really need to talk, and sometimes I need to talk a lot. He sits there at the kitchen counter with me after a long day and looks me in the eye, even when it’s late.
Most of the time, all I want to do is bring E. over to Lake Harriet Peace Garden to breathe in the tulips together or for a tromp down to muddy Minnehaha Creek. But if you need us, we’re probably somewhere that requires a co-pay.
My biggest hope is that by telling our story, it will help someone, somewhere, feel a little less alone.
In terms of how to read this blog: it’s up to you. If you are into linear thinking, then start at the bottom. The posts are in chronological order, so that’s the beginning. But feel free to start wherever you would like. I’m just glad you are here.
To contact me, you can e-mail firstname.lastname@example.org.