It’s nine months after the trauma of my daughter Em’s birth—when she was born not breathing and needed to be resuscitated. As a result, she has cerebral palsy (CP), a lifelong muscle movement disability. We’re at the Stanford Children’s Specialty Health clinic in San Francisco for a check-up.
We’re meeting with Em’s neurologist, Dr. Morris, who does a quick evaluation of her reflexes and asks us some questions about her progress.
Things have been going more smoothly at home lately. Em’s been sleeping better, which means my wife Allison and I have, too. She’s been retching less often. Her therapies have progressed steadily. But lately, Em has started doing something new—something most babies usually grow out of by her age.
When we place her flat on her back, she startles. Her arms fly out wide to her sides. Her hands try to grasp something, and it looks as if she feels like she’s falling. Then she screams. I recorded a video of it to show Dr. Morris, although I’m sure it’s nothing to be concerned about.
As I show her the clip on my phone, I wait for her to tell us that it’s just a phase—that there’s nothing to worry about; that we can drive Em home, eat snacks in the car, and let this visit fade behind us.
But when the video ends, I look at Dr. Morris and her brow is furrowed.
“Can you show that to me again?”
I restart the video. It’s as if I’m watching Dr. Morris in slow motion. When the video stops, her eyes move from my phone to Allison, then to me. She takes a deep breath through her nose and exhales forcefully through her mouth. After nine months of absorbing the challenges that have followed Em’s birth, I’ve developed an ability to sense the arrival of bad news.
“I’m a little worried about this,” she says. “There’s a chance that this is something called infantile spasms. They’re a form of seizure and they can be very serious. I’d like to do another EEG study on her.”
My body feels like it’s heavy and floating at the same time. Like I’m suspended in molasses. But I find words to tether me to this moment and string them together:
“Okay, so when should we schedule that?”
“No scheduling,” she says. “We’re admitting her for an overnight stay right now.”
The emotions from Em’s birth return in an instant, transforming the room’s silence from safe to threatening. I thought I was an hour from home, but this news thrusts me back into a sea of uncertainty—and an endless fog I can’t see beyond. I should have known that something like this would happen. We have a child with an erratic medical condition and unexpected complications are bound to arise. But knowing that they will happen doesn’t make them any easier when they do.
Trauma doesn’t wait for permission to reassert itself. It always arrives in an ambush.
In the days after Em was born, the EEG showed subclinical seizures, meaning they were happening in her head but not in the rest of her body. The doctors put her on seizure meds and by the time we left the hospital four weeks later, she wasn’t having them at all. Three months later, Em had a follow-up EEG and even that one was clear.
I’m clinging onto some hope that all will be okay.
The next morning, we wake up and the bandage that’s supposed to be holding Em’s EEG leads is hanging halfway off her head. I’m nervous that it’ll nullify the results of the test. But the neurology team got the data they need and Dr. Morris will be here shortly with the results. We wait anxiously in the meantime. I wouldn’t say we’ve gotten used to waiting at the hospital, but we’re certainly not amateurs at this point either.
Dr. Morris is smiling and chatting with a resident doctor as they both walk toward Allison and me on the other side of the room. Her demeanor looks airy and I feel a small ripple of relief pass over me. She wastes no time and says, “Emily’s results are totally clear.”
The ripples get a little bigger and I feel lighter.
“That’s great news,” I say. And after a brief pause, I add, “Then what do we do about her startling?”
“Well, I’d like to prescribe clonazepam, which should help her startle less and it may even help her get to sleep more easily at night.”
“I definitely like that last part,” I joke.
As the polite laughter subsides, I get more serious. I want to ask her a question I’ve been pondering all morning, but I’m afraid to know her answer.
Em is nine months old and she should be trying to mimic the sounds we make by now. Or at least attempting to. I often hold her in my arms on my lap and say, “Bah, bah, bah. Ma, Ma, Ma, Da, Da, Da.” She stares at me and smiles, but makes no noise.
I swallow and push myself to ask my question before Dr. Morris turns to leave the room.
“So I know I already asked you this question about a week after Em was born. But will her brain injury affect her cognitive abilities?”
Without hesitation, she answers, “Not at all. The part of her brain that was injured won’t have any impact on her high-order thinking.”
I’m relieved, albeit taken aback by the definitiveness of her answer. The molasses dissipate. I feel all the tension and trauma fade into the background—at the ready to pounce again on some other day.
My thoughts shift to getting my family home. It’s been a long couple of days. I’m ready for a warm shower and a change of clothes.
Now, Em is three. She’s non-verbal and she still doesn’t mimic even basic sounds. It’s easy to get discouraged by it. It’s easy to think that she’ll never be able to communicate with us. It’s easy to feel like there’s no hope.
But then she smiles and laughs when I say her name and my heart melts.
I’m so screwed.
Once she figures out how to get what she wants, I know I’m going to fall for that smile every damn time.
Em’s CP affects her muscle movements, including the small muscles used for eating and talking that most of us take for granted. While she can’t form words, she can certainly make many different noises.
It sometimes feels like we’re guessing what she needs. Yet our friends and family are often surprised at how well we’re able to decipher the different sounds she makes.
My mom was visiting our house a couple of weeks ago. Em was playing on the floor and yelling at the top of her lungs. My mom leaned down and said, “It’s okay, Emily.” But then I said, “No, that’s a happy scream.”
She also has her “I don’t like this song” whimper, her “I’m tired of being in my stander” whine, her “I’m ready for bed” cry, and many others.
We make it a point to tell her everything we’re doing in the hopes that she understands us. When I ask her, “Do you want to go bye-bye in the car?”, or “Would you like to play your game?”, she makes a happy-sounding noise that’s not quite a full-fledged laugh, but close.
Of course, there are times when we don’t guess right. Like when we think she wants her music, but she’s still upset, and it turns out she peed through her diaper and her pants are soaked.
Beyond verbal communication, we use laminated flashcards with pictures of her toys, symbols for things like music, and other activities and items on them. The idea is that she can pick what she wants to do next. But it’s tough to be consistent with them because she’s unable to accurately touch them. At some point, we will explore tech devices or iPad apps for communication, yet it’s hard to get our hopes up when she has so much trouble with her muscle movements. I worry that her limitations will only get more frustrating for her over time.
Back in January, one of my cousins shared a video with me. It was an interview with an 18-year-old woman with CP and her family. She was unable to talk for most of her childhood, but she became determined to do so as she got older. It was hard to understand her at first, but the more I watched, the easier it was to discern what she was saying.
I know these types of videos can sometimes be frowned upon in the disability community and referred to as ableist inspiration porn. The woman in the video was certainly inspiring and her positive attitude was infectious, but this video didn’t come across as ableist to me. I’m not sure exactly where the line resides, to be honest.
The video was a bit difficult for me to watch. It was almost like getting a glimpse into my possible future, but it felt so far away. It still does.
Em’s young, so I’m holding out hope that—like the woman in the video—she will eventually be able to figure out how to talk. But even if she never does, I’m sure we’ll find other ways to communicate with her.
Sometimes I daydream about Em’s first word. I wonder if it’ll be “mama” or “dada”. Or maybe she’ll shock us with something unexpected. One thing’s for sure, though: I will instantly start crying tears of joy.
Thank you for spending your time with my words. It means a lot to me.
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Okay, so you have me in tears, Lyle, but in a good way. I’ll be sending you a private email. Between my own kids’ health issues and being a former special educator, there’s lots to discuss if you’re open to it.
Very nice Lyle