I found myself in the Target again today hearing another person, a person I had never met before reassure me that my daughter was “going to be okay.” It’s the third time this week. Usually their sister or cousin or daughter’s friend had a small baby or a baby who walked late or whatever. And that baby is always fine now. “He’s 6 feet tall and you’d never know anything was ever wrong.” Because of this experience they can divine that my child will “be okay.” I guess all the clairvoyants walking around in the capital region are sensing my vulnerability after last week’s trip to the Emergency Department.
I try to think of witty responses to these situations: “Really?! Thank you so much, I really wasn’t sure until now. I’ll let her doctors know.” Mostly I smile and say, “I hope so.”
But really what I want to ask is: “What the fuck do you mean by that?” Because I know lurking behind that statement, “she’ll be okay, I can tell,” is a ton of confused hooey. I’m not even sure what the worst of it is anymore. Is it the vague assertion that she might live a “normal” life with familiar challenges…and that this is what it means to be “okay?” Or is it the dismissiveness of the statement that means underneath: “I cannot contemplate the fucked-uppedness of your world right now, so I will chose to write you a happy ending.” Perhaps it is the guilt inspired by thoughts of their healthy children running and playing and eating and growing that writes this happy ending for Esmé, folds our lives up neatly and, in a few words, places us in a box marked “OK.”
I don’t know. But I know for damn sure that some people don’t get happy endings. And I also know that a real lot of us just have figure out how to have happy happenings. And I know if I elaborated, if I told them about watching my child almost slip away, about meeting parents whose children had slipped away, if I told them about holding her while she seizes over and over while doctors fumble around like fools, if I told them that they’d have to put us in that unseemly pile under the crooked sign labeled “fucked up.”
And nobody wants to do that.
But the thing is that it is fucked up. A lot of things in life are. It is just the way it is. And it seems like so many of us are running around trying to feel special for our own little corner of fucked up. Either that or they deny the possibility that anything could be wrong…it’s not possible that my husband leave me. No way will I lose all my money and my home. It’s not possible that my teenager develop leukemia and die. No no no.
It certainly is not possible that my unborn child have a genetic condition. No, not me.
I’ll just put it out there: The first time we were told that our child likely had a genetic condition was after a twenty-week ultrasound.
Everyone seems to want to know this…but it usually takes them a while to ask. It’s because they know that I know what they are asking: Did you have the opportunity to decide to keep your child knowing how difficult things would be…or might this shit creep up on me too?
The answer is yes and no. There were “several anomalies with the fetus” (they always said “the fetus,” not “your baby”). After some genetic testing we knew that she did not have a trisomy as they had initially suspected. We refused the further genetic testing they offered.
We decided that everything would be okay, much in the way that the woman in Target decided it, with all the clueless certainty of someone who has never been a tragic victim of much of anything at all. I spent the rest of my pregnancy in a state of calm bliss unlike any other time in my generally melodramatic and sarcastic existence. I was totally stoned on images of my little girls blue eyes and curly brown hair (shockingly, I got this spot on) bouncing as she ran to me, leaping into my arms, calling me “Maman.” I thought about her telling me of her first crush–and how cool I’d be about it. I hoped she wouldn’t be too compelled to attend architecture school like her parents and practice like her father. I worried that she might be too bookish and sullen as a teen.
Now, now I worry that she might pass away from a seizure while I sleep. Or worse…ventilated, struggling, and drugged in a hospital. This is my big worry: my child’s possible death. And even though I think about it, I still find it hard to write it. My other worries seem ridiculous by comparison, so I do almost enjoy them. I swim in the concern over whether she’ll walk, if she will ever go on a date, will I ever be able to let her out of my sight…will she learn to dress herself…use a toilet…speak…
And it is funny, because as long as she maintains her personality, as long as Esmé can smile and laugh and find the world hilarious, the woman in Target is right: It will be ok. Not the way she thinks “ok,” but ok nonetheless. That is the beauty of ok. I guess it means what it needs to mean.