Somewhere during my third trimester, probably over a bowl of ice cream and certainly while rubbing my belly, I mused to Chris, “Our job as her parents is to help her become the person she’s meant to be.” We had been playing the what-if game that all expectant parents play. (Don’t they?)
What if she hates us? How could she when we’re going to teach her and listen to her and love her unconditionally?
What if she’s gay? I just hope she finds someone to love and grow old with.
What if she decides she want to be a vegetarian like her momma? I’ll be happy as long as she’s nourished and growing.
And I had decided that I would never be disappointed in who Rylin becomes because my only expectation is that she becomes herself. Those parents whose lives shatter when their children choose the “wrong” career or marry the “wrong” partner are surely only devastated because their children have failed to live up to what mom and dad have already carved out for them in their minds. If we just roll with it and watch Rylin unfold into the young woman she is, how could we ever have regrets? I was so confident in my ability to clear my mind of all expectations for her future and remain open to all the possibility that was curled up and kicking inside me.
It wasn’t until her two week check-up that I began to question my willpower to not start to fill in the blanks for what lay ahead for her. “When do we retest her hearing?” I asked her pediatrician. She received a “refer” on the hospital’s infant hearing screening prior to us being discharged. Refer, as far as I can tell, is a nice way of saying “fail” without making new parents feel like their kid is anything less than perfect. Anyway, the staff pediatrician at the hospital assured us that it happens to lots of kids and that “the vast majority of them test normal at the recheck.” We tucked that information away and assured ourselves that Rylin would be like “the vast majority.” So there was nothing to worry about.
“We can recheck right now, as long as she stays quiet like this,” her doctor replied. She pulled out a machine that was about the size of a walkman (yes, I’m dating myself) and put a tiny earpiece into Rylin’s left ear as she dozed in my arms. A few seconds later, she withdrew the earpiece, made an adjustment, and replaced it in her left ear again. And then, she said what I was afraid to hear. “She’s still not passing. I just checked twice.” We were told that additional testing would be required and that a specialist from the children’s hospital would contact us to schedule an appointment.
In the days leading up to the appointment with her audiologist, I convinced myself that nothing was wrong. She probably just had fluid in her ear from delivery still. She startles to loud noises, so clearly she’s fine. Right?
The audiologist began with a test that, she explained, tests whether or not there is any blockage in the ear canal. There wasn’t. No debris, no fluid…just a clear path to the ear drum. I breathed a sigh of relief, certain that that meant the fluid that was in her ear before—the fluid that prevented her from passing the initial screenings—had drained. She’d pass this test with flying colors.
Next, she pulled out the same walkman-looking machine that Rylin’s pediatrician used in her office. This, come to find out, is called an OAE (oto-accoustic emissions) test. Greek to me. Anyway, she checked both ears. “We like to test both, even though in her case we aren’t concerned about her right ear. We like to gather information from both ears.” The news wasn’t quite what we were expecting. She wasn’t passing on her left ear. But her right ear was behaving in a similar way. Does this mean neither ear works correctly?
The audiologist explained the final test to us as she affixed tiny round stickers to Rylin’s forehead and behind her ears. In the BAER (brainstem auditory evoked response) test she would attach electrodes to the stickers and those electrodes would measure Rylin’s brain’s response to various tones played through a tiny earpiece inserted into her ear. One at a time; again, both ears would be checked.
We sat as quiet and still as possible, hoping that Rylin would remain sleeping long enough to complete the test. I watched the computer screen in front of the audiologist and wondered what all the lines meant. They’re moving a lot. That’s a good thing, right? About an hour into the test, the earpiece was moved from her left ear to her right. And we continued to sit quietly. Until about 15 minutes later, the audiologist explained that Rylin was starting to stir too much to continue the test. “I was able to rule out profound, severe, and moderate hearing loss.” I felt relief until she continued. “But I haven’t been able to rule out mild hearing loss.” And, again, her right ear (which passed the initial screening) is behaving much like her left. She showed us the computer screen she had been working from and pointed out what the lines meant. “This line here is the sound I played. And this line here is her response to that sound. With normal hearing, you’d expect to see a distance between these lines.” Rylin’s report didn’t look normal. Additional testing would be needed. When we come for our second appointment, the audiologist said, we would retest both ears. And determine whether or not Rylin might be a candidate for hearing aids. Hearing aids? Rylin doesn’t need hearing aids.
When we opened the exam room door and entered the hallway leading back to the waiting room, I caught a glimpse of my future. A young boy was on his way in. He looked to be about five years old. A bit unsteady on his feet, clutching a toy truck in his arms, thick glasses perched on his nose. The woman walking next to him—likely a speech pathologist—chatted with him and I couldn’t help but notice that his pronunciation was off.
Suddenly, the what-if game took a different turn. What if she really can’t hear? What if her hearing loss affects her speech development? What if she needs hearing aids. I found myself googling to learn more about infant hearing loss. Could infant hearing improve? Could the BAER test results be wrong? Do children with mild hearing loss perform as well in school as children with normal hearing?
I expressed my concerns to Chris. “If both ears are behaving the same, that means her left ear is only barely failing, right?” And what I thought was, “Or her right ear is barely passing.” I admitted that I was worried that she may need hearing aids. I was worried about how others would receive her, how her peers would treat her. Will she still get to be a normal little girl? I watched her closely for signs that she was hearing. She startles when the dogs bark. Her eyes flinch when I replace the cap on her bottle after a feeding. She can’t possibly be not hearing, right?
A week passed between that day and our next appointment. Same office. Same test. Different audiologist. After about two hours of sitting quietly, watching my sleeping newborn with electrodes all over her head, the audiologist turned to me with news. “She is testing in the normal range. She is responding to all the tones I’ve played and I’ve been able to duplicate those responses, which rules out the possibility of it being a fluke.” Both ears. No more retesting. No hearing aids. Completely normal.
I let a tear slip out and broke into a huge smile. I have never felt so much relief.
And then I felt guilt. I realized that despite the fact that I vowed to not plan my daughter’s future for her, I somewhat had. In my mind, she’d learn to talk early and excel in school. We’d whisper secrets to each other before I tucked her in at night. She would tell me long, winding stories about her days and her friends. I hadn’t planned out anything that didn’t seem like a given during my pregnancy. But I had planned enough to be shattered by the reality that a hearing loss could change the things I wanted for Rylin’s future.
I felt like a terrible person for allowing myself to spend the last week thinking that a mild hearing loss was the worst possible thing that could have ever happened to Rylin. I thought back to that little boy at the audiologist’s office and felt ashamed that I saw his imperfections before I saw the fact that he was a happy, well cared for little boy. I felt disgusted that my biggest concern was possibly needing to have my newborn fit for hearing aids when other parents are dealing with much bigger issues than mine. I thought of my cousin and her wife. My cousin was due to deliver her baby girl exactly one month after I was due to deliver my baby girl. But instead, she delivered a sleeping baby ten days after Rylin arrived. How could I have been selfish enough to worry about a possible mild hearing loss when she’s dealing with child loss? Isn’t adapting to a future slightly different than I expected for my child better than kissing my baby goodbye on delivery day?
I’ve talked to my cousin about my guilt over the fact that she and I got to experience pregnancy at the same time…and now I’m left with a healthy baby and she’s not. I feel a pang of regret when I share photos of Rylin to Facebook because I wish she could be sharing photos of Delaney growing, too. She told me not to feel guilty. “Life isn’t fair at times,” she said. “But the fact you guys have a beautiful healthy baby and we don’t isn’t considered one of those times.”
This post is for Sasha. And Racheal. And most of all Delaney. When life throws us a curve-ball in raising Rylin, I hope I can see past the set-back and remember how blessed Chris and I truly are.
On a related note, my cousin’s grieving has brought her to blogging as a way to get her emotions out. You can read her work here: http://sakoh1113.blogspot.com/?m=1