Even though it’s hard, much of the time, I feel like we’ve got this. I don’t need our family to fit into a traditional mold, because I never imagined that it would.
My 2-year-old daughter E. started saying the word “doctor” in her tiny, super-soft voice, which makes every syllable sound like a compliment. She could be on national baby radio, if there was such a thing. That’s how soothing her voice is.
That she knows how to pronounce the word “doctor” makes sense. She’s probably heard that word as many times as there are lakes in Minnesota (approximately 10,000). I’m certainly not proud of it. I’m a less-is-more type person when it comes to medical intervention. At least, I used to be.
I used to be a lot of things before I had my daughter, who was born with a rare chromosomal deletion. Her diagnosis is so rare that it has no name. Which makes sense, if you knew us. Our family is not a cookie-cutter group. We are, in some ways, beyond labels.
More and more, I want what we have. I accept it, sometimes graciously. I am happy to shout uncle on normative family life. Let’s be transgressive! Let’s be the people at the birthday party who are dancing in the living room with a toddler on a tube! Let’s hang out with the other folks who aren’t pretending to parent perfect cuties. Even when it’s heavy, let’s see if we can make each other laugh so much that you accidentally spit out water all over your best jeans, just after you took a big sip.
That’s the sign of a good day.
At a recent appointment, E. took one look at the neurologist, started wailing, and then threw up on the clean grey carpet of his office floor. Projectile style, shooting out in an arc like cartoon puke. The doctor paused for just a moment, exclaiming, “Wow.” And then got back to talking about E.’s cognitive capacities.
Our daughter is developmentally delayed. We knew that already, and yet it’s still hard when someone else says it out loud. It’s OK when my husband Cedar or I say it, but I don’t like other people calling it out like that. I guess it makes it more real.
The doctor basically said this: She may live independently someday, but she might not. We will know more in a handful of years, when she is 5 or 6 years old.
Luckily, somehow, I’ve gotten better at living with the unknown.
The doctor explained, looking right at us as he swiveled around in his chair, that E. won’t likely be any less happy. He said, “People adjust to their own circumstances.”
But he was clear that it could dramatically impact our happiness, as her parents, if we let it.
Well, good point. There’s so much riding on the way we look at her differences, her medical complexities, and on the way we look at pretty much everything.
Even though it’s hard, much of the time, I feel like we’ve got this. I don’t need our family to fit into a traditional mold, because I never imagined that it would.
Before I settled down into this life, with this Northern-bred, jazz savant, sweetheart of a man I call Cedar, I used to date all kinds of people. Mostly guys, but some women, too. I crushed out on a few hotties who didn’t define themselves in those terms at all. I didn’t have the dream of a big white wedding. But I always wanted children.
But sometimes, sideways, it still hits me. I had my own expectations of how our family life might be, and it wasn’t quite like this. Today, as I’m writing this, we are five outfits deep and three loads of laundry in. I don’t want my daughter to have to endure so much puking, living her life on a feeding tube.
Some days, I just want it to be easier. After I’ve been woken up too many times the night before—especially following the dreaded, foreboding pre-midnight wakeup, I want to use a simple term. Sucks. And then do things like drink too much local beer (except I can’t because it gives me insomnia) and complain (which, ask Cedar, oh I do).
Even so, I try to bring myself back. Not for the sake of being good. But in order to be grateful. And in order to accept what is, which is the only peace I’ve ever felt.
The best way I know how to do that is to walk outside. I don’t care what the question is, it seems like paying attention to our wild landscape is the answer. Right now, in the Midwest town where we live, most of it is dying or turning brown. In the trees behind our house, it smells like wet socks and the depths of a forest. Somehow, I find that comforting.
Woods of Minnesota (or woods anywhere, really), I feel like you get me. You don’t need to be cute or easy or pretend everything is perfect. Creatures are born all of the time. The trajectory of life is somewhat predictable, but often it isn’t. We live, and then we become a memory. And everyday, every hour, every minute, the sky does what it needs to do.
The sky doesn’t try to be anything, except for what it is. It all changes. And we change with it.
Emma Nadler is a citizen, mama, psychotherapist and writer who lives in Minnesota. She keeps a blog called Itty Bitty Yiddies about her wild, sweet, unexpected family.
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