This is the story of my family, the way that I see us. When I started this blog, I was a 36-year-old Midwestern Jew. Now I’m a few years older and definitely better looking. Still Jewish, still living in cold, reliable Minnesota.
I’m an extreme fan of the public library to the point where I feel elated whenever I check out new books. I’m also a psychotherapist, which I love. I think it’s easier than parenting.
I have two small children, my itty bitty yiddies. I love these children in a wild, mystical way which is even more terrifying than people make it out to be.
Our tiny daughter E. was born with a unique genetic map. That’s how we label her rare chromosomal deletion (it’s a big one, 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.
Most days, 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.
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.
We also have a preschool-age son named A. He, too, is fairly itty bitty in size—but always on the charts and healthy. Except for his Asthma. His nebulizer treatments add to the feeling that we’re running a really loving, sort of disorganized medical clinic. A.’s a passionate guy. Sometimes, the passion inspires yelling you can’t make me get my boots on, I’m wearing my Crocks (in a snowstorm), etc. He’s also incredibly charming, verbal like he’s been talking about the deepest things for years. Because he has. I swear he had just turned three when he asked me, “Where does G-d live?”.
My biggest hope is that by telling our story, it will help someone, somewhere, feel a little less alone.
If you are into linear thinking, then start at the bottom. It’s all 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 email@example.com. Or follow me on Instagram, something I thought I would despise, but actually find fascinating.