Finding the humanity within

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Photo by USGS

When my daughter Em was just days old, laying on her back in an isolette in the neonatal intensive care unit (NICU) with a maze of wires and tubes attached to her, she sometimes felt like more of a problem to be solved than a person.

The incessant beeping of devices, an occasional dinging alarm, and a screen that displayed various vital signs didn’t help matters. When the doctor came around a few times a day, I always hoped for some semblance of good news. Maybe a test with promising results or a new and improved treatment plan. Maybe a timeline on when we would be discharged.

When we were finally discharged a month later, Em came home with one tube still attached—a feeding tube in her nose that was taped to her chubby cheek to keep it in place. Every so often, she would grab it with her hand and yank it out, which meant we would need to replace it. To try to mitigate the yanking out issue, we kept a mitten on whichever hand of hers was on the same side of her face as the tape job, but she’d still finagle her way out of it occasionally and snatch the tube anyway. I’d like to think she was doing it on purpose, like it was her way of trying to tell us she wanted it the hell out of her nose. But with how erratic and unpredictable her muscle movements were, she probably just got lucky. Or unlucky, considering what we had to do next to get it back in, which entailed measuring out how far it would need to go down to reach her stomach, and then quickly shoving it up her nose and down her throat to get it there.

This was all before she really figured out how to cry. Instead, she would get a look on her face like she needed to sneeze and her eyes would get big. I couldn’t help but grimace and make a similar face while I watched it. And I only watched. Before we were discharged from the NICU, my wife Allison had been trained on how to replace the tube and I hadn’t. My job was to pin down Em’s arms so she couldn’t use them to swat at the tube.

That same tube—and later on a different one that was surgically placed through her belly into her stomach called a g-tube—was hooked up to a feeding pump filled with Allison’s pumped breast milk for hours on end each day. I printed out a spreadsheet so we could keep track of Em’s calories and when we gave her which meds. It was a way to feel like I had some measure of control in an otherwise uncertain situation. Her feeding schedule and med dosages changed seemingly as rapidly as she grew.

As she got bigger, so too did the number of medical devices we had strewn about our house.

At first, we tried the typical chairs kids sit in to eat or whatever. But she couldn’t hold her head up on her own, so her therapists would have us try more adaptive ones. None really ever worked.

Her vision therapist added this homemade-looking contraption called a Little Room—a cube made of PVC pipe with a grid on top and a smattering of toys tied off with lengths of elastic hanging from it so she could play with them without them getting out of reach.

When she grew a bit more, she got a specialized chair that could double as a stroller. We strapped her in with a harness so she wouldn’t fall over. Her head control still wasn’t any better, though.

She wasn’t crawling either. And certainly not walking. So eventually, she was fitted for ankle and foot orthotics and a stander device was added. And a couple of years later, a walker device was added, as well.

One of the more elaborate medical devices she has is her SleepSafe bed—a Formica walled hospital bed complete with side walls that hinge down and a remote control for adjusting the angle of her mattress. The mattress itself is comprised of something like 20 cushioned slats with tracks in between them where we position different-sized blocks to keep Em on her side throughout the night. Each cushioned slat and block has its own soft elastic-lined terrycloth cover, which means it’s a huge pain in the ass to change them all out, which also means we don’t wash them as frequently as we probably should.

These days, our 1,262-square-foot home has dedicated spots for each of these medical devices. We didn’t put up our fake tree this past Xmas because there wasn’t any room, instead opting for a small fake one my mom let us borrow that we placed on top of a side table. It’s always an ordeal whenever we attempt to rearrange the living room. That feeling of a refreshing new change is replaced by a reminder that Em’s cerebral palsy is a life-long disability. And as she grows, so will the size of her devices.

During the first year or so, it felt like all we needed was to get further down the road and things would improve. She would make small strides in her physical or occupational therapies here and there. But she eventually started to plateau.

Her pace of growth slowed too and our day-to-day became more routinized. She’s four and a half years old now and she still doesn’t eat by mouth. All her meals and meds are prepped in specific dosages and administered on a specific schedule. I’m not sure if she even understands the sensation of hunger. She can’t really tell us either. Which is to say, she can make noises, but she can’t form words.

Earlier this week, while Em was at school, Allison and I received this text from her teacher: “Have you two heard many word approximations at home?”

We hadn’t really. But we also didn’t know what to listen for. I mean, Em makes lots of sounds. She lets us know when she’s upset and she screams loudly when she’s excited. Some of the noises are seemingly routine or triggered by the same thing. Like when we put her orthotic braces on her feet and for some unknown reason she cries almost without fail when we put the second one on. Sometimes she does the same thing when we put her second arm through her sleeve when changing her shirt too. On the car ride to school, she cries in the exact same spots every time, sometimes so loud I can’t hear the music or podcast we’re listening to.

It’s hard to know what any of those mean, exactly.

Then her teacher replied: “We are definitely hearing ‘muh’ for ‘more.’ And we all thought we heard ‘hep’ for ‘help.’”

When I read the text, I didn’t know whether to smile or cry.

I realized then that ever since those early days in the hospital I’ve too often been focused on Em’s devices or disability more than the human being with wants and needs behind it all. I’ve come a long way, but I’m still not proud of how worked up I can get when she’s crying or whining. I need to remember that when she vocalizes, she’s trying to communicate something to me. Em’s neurologist has told us more than once that the brain injury she sustained at birth shouldn’t have an effect on her high-order thinking. But it’s easy to lose sight of the bigger picture when she can’t talk and the days become so routine.

Em’s disability isn’t possible for us to fix. We can only adapt and find ways to help her be happy and live her life as best she can. Sometimes that means challenging her to try something she doesn’t like, just like any parent of a typical child would do. But other times, it means paying closer attention and listening for the humanity that’s trying to emerge. And making her feel heard.

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