This is the story of my family, the way I see it. I’m a 37-year-old Jew with freckles and blond hair. I live in cold, reliable Minneapolis. I was born and raised here, then lived out in easy Santa Cruz, California and then later off a dirt road in Vermont in a house without a lock on the front door. Somehow, for the love of family and, clearly, a limited memory of what winter really is like, I moved back a decade ago. I’m a sometimes-writer and an extreme fan of the public library to the point where I actually feel elated whenever I check out new books. I now have two small children under 5, my itty bitty yiddies. I’m also a psychotherapist, which I love. I think it’s easier than parenting.
We live in a sweet old house in which the bedroom floors creak excessively, especially when you’ve just gotten the baby down. I’m married to a kind-hearted man named Cedar 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.
Our baby E. was born with her own unique genetic map. That’s how we’ve decided to talk about her rare chromosomal deletion (it’s a big one, on the Q arm of the 12th chromosome). The genetic counselor from the hospital told us that she may be impaired, possibly in some sort of seismic way, but there are only 4 people documented in the world who have this deletion. The other children who have it are heartbreakingly altered. One is learning to tie her shoes, finally, at age 12. But because this condition is so rare, there is no roadmap for our girl. How she 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’s all part magic and part science.
E. is nine months as I begin this blog. She’s sitting up and starting to do just a little bit of inch-worming around. She probably won’t walk for a good long while, but the doctors say that she will walk. I hope by 2 she will be taking her first steps. Which is not something I thought I would ever have to be hopeful about. But when those steps come, it’s going to be like a football arena in this house. I will be doing the wave, even if it happens to be just me alone in the living room in my plaid flannel pajamas.
What you really need to know about E. is that she’s tiny as hell (right now under the first percentile, off the charts) and in the 99th percentile for overall joy, giggles and snuggling (of course, this is based on pure empirical evidence). Kiss her face and she will light up like a menorah on the first night. Poof, easy as anything. She’s sweeter than sweet. The baby I always wanted, the kind you can bring to the store and she just looks all around and smiles at the cashier ringing up the yogurt. Except that its really hard to bring her anywhere enjoyable because between napping and then the other medical appointments (gastroenterology, neurology, pediatrician, speech therapy, physical therapy to catch up on gross motor) there’s not much time left. Most days, all I want to do is bring her over to Bachman’s garden store 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.
Some days when I’m at home I wish I was working. Working outside the home is as close to a vacation as I’ve gotten in the last year. And I don’t know if that’s beautiful or sad or probably, most likely, a little bit of both.
I also have a preschool age son named A. He’s also fairly itty bitty in size— but always on the charts and healthy. Except for Asthma. His nebulizer treatments add to the feeling that we’re basically running a really loving, sort of disorganized medical clinic. A.’s all kinds of passionate about almost everything. And by passionate I mean full on, jumping up and down with excitement multiple times a day. Often about semi-mundane things like finding a book about tractors at the library or seeing his best friend at school in the morning. And then sometimes, the passion turns into kicking and screaming as a way of saying good bye, don’t make me get my boots on and I-want-pretzles, etc. He’s also incredibly charming, verbal like he’s been talking for years and years and all of the sudden shockingly well mannered when we go out to eat. The other night just before bedtime he said to me, as we were all cozied up together under his winter weight down comforter, my arm resting on his fleece polar bear PJ’s, “Thank you for being my best friend.”
I’ve got a lot of love and sometimes it’s overwhelming. I love these children in a wild, mystical way which I find even more terrifying than other people make it out to be. I also love being Jewish (and I actually like going to services, which basically makes me a Super Jew), and being outside and growing flowers— although if I’m honest with you I’ve hardly grown a flower since I had my first child. I used to make bouquet after bouquet with things like hydrangea, amaranth and chokeberry. With only minimal embarrassment, I’m really not doing any of that right now. I have kept a ficus tree alive through these sleep deprived years, sprouting behind the couch where it gets light from three windows. And I consider this (the whole keeping it alive thing) an actual accomplishment.
I need to be clear about one more thing: I’m not using my children’s full names, just the first initial. I don’t want these itty bittys googling themselves someday and finding too much information tied to their identity. They are who they are, and it’s not for me to define it. This is just the way that I see things.
I hope that in telling our story, it will help someone, somewhere, feel a little bit less alone.
If you want to reach me, you can e-mail me at email@example.com. Please do. I’d like to hear from you.