Ryland’s cooperation as we’re putting her into her gown crushes me even more. She looks to me in confusion as the anesthesiologist prepares to sedate her with a mask that releases an anesthetic combined with fruit flavoring for patients who are children. I love you, Ry, I sign to her, fighting my tears. Right after Ryland is asleep, we walk alongside her as they wheel our baby girl through the hospital corridor toward the operating room.
On the way, we pass through a section of the hospital with an entryway marked PEDIATRIC ONCOLOGY UNIT. “You know what, Hill?” Jeff says, an optimistic calm suddenly filling his voice.
I look up at him.
“I just realized: this could be so much worse.”
I take his hand. I think of the families who have occupied the rooms inside this hallway, how all of them would probably trade places with us in a heartbeat.
Chapter Three
The Gift of Sound
After six hours punctuated by just a few updates, the surgeon emerges from the operating room. She’s smiling. “Good news,” she says. “We’ll be releasing Ryland to come home with you tonight.”
“So it all went perfectly?” Jeff asks.
“Perfectly,” she says.
Jeff and I grip each other’s hands in relief as the staff wheels our little one, still sleepy, a little confused, and now wearing a white gauze bandage that’s wrapped securely about the circumference of her tiny head, into the recovery room to come fully out of anesthesia. Here the surgeon briefs us on the details. “As you know,” she says, “what we implanted today were the internal units that will process sound signals for Ryland’s brain to receive.” We were well aware of this part and had studied about it thoroughly: part of the implant surgery required them to drill into Ryland’s skull to secure these internal units so that they sit flush with the head. “I took my time and implanted these very precisely,” the doctor says, “so that even with a ponytail, Ryland’s external processors will hang symmetrically.”
For our child to come through this surgery was the greatest concern, but now, knowing that the doctor did what she could to make the implants look as normal as possible, Jeff and I clench our hands tighter together. It’s all going to be okay. Throughout our research, as we’ve seen images of cochlear implants, a good way to describe them is that they look like an oversize hearing aid. The bulk of the implant is the sound processor and the battery that sits behind the ear, with a hook that goes over the ear to keep it in place. Coming off the implant is a wire that’s two and a half inches long and connects to a round, quarter-sized disk, called the headpiece. The headpiece is held in place by a magnet that is implanted under the skin, and sits on the side of the head, behind and above the ear.
“It will take three to six weeks for the incisions to heal,” the doctor continues, “and at that stage, we’ll fit Ryland with the external processors that will transmit the sound to her brain.”
“And then will come the day we’ve all been waiting for!” Jeff says excitedly
“That’s right,” says the surgeon. “Activation day.”
Activation day is a well-known milestone among families of cochlear implant patients. That’s the event that we’ve watched strangers celebrate in YouTube videos; it’s the moment we’ve discussed with Susan and Monta and the families whose children also have had cochlear implants.
It’s also the day that will determine whether the implants have worked. Our research has informed us about the troubling aspect of cochlear implants: they aren’t guaranteed to be successful. The doctors have told us that many implanted children don’t learn to speak, and their eventual hearing is less than marginal. But the success stories lift our hopes, showing us how possible it is that Ryland will be able to communicate with her peers, listen to music, and appreciate all the sounds in our environment that Jeff and I hear every day without even giving it a second thought.
The next morning, we surprise Ryland with a dollhouse when she wakes up, and we give her Popsicles and Jell-O whenever she asks. But her eyes have swollen shut from the invasiveness of the surgery, which makes our hearts ache even harder. Per the doctor’s instructions, for the first seven days we keep the incisions completely dry. We never leave her side—we even sleep on the couch in the living room beside her.
Our main goal is to keep Ryland happy and keep her mind off the pain as much as we possibly can, but even to look at the incisions is intense. I can’t imagine what they must feel like for a twenty-month-old. We take her for rides around our yard in her wagon, and we try everything we can think of to make her laugh. Every time a gentle smile breaks on her sweet face, we know that we are all making progress.
One point that we can’t seem to agree on is our family’s use of sign language. Jeff believes it would be best to wean Ryland off sign right away so that she’ll be eager to learn verbal language as soon as she’s able, but I don’t want Ryland to find herself in a world that’s completely new, suddenly unable to express herself or to understand us. For these few weeks, we decide, we’ll use signs until she learns to speak.
At Ryland’s three-week checkup, it’s more good news: the incisions have healed, and the audiologists can program Ryland’s devices. The morning that she’ll be activated, I dress her in one of my favorite toddler outfits with the intent to capture the momentous events on camera: a pink-and-black polka-dot top with matching bloomers and black satin Mary Janes with a pink flower on the side. I do her hair, as usual, and put in a matching bow.
One fortunate thing about the future, I figure, is that Ryland is a girl and can keep her hair long over her processors, if she chooses that.
Our drive to the hospital is quiet, the air between Jeff and me tense with a combination of excitement and fear that I couldn’t have even anticipated. From the waiting room, the pediatric audiology nurse invites us into the audiologist’s office, and the experience inside is heightened by even more anxiety, though I figure that if I’m hiding mine from Ryland as well as Jeff is, then we’re still doing okay.
Jeff stands, prepared to shoot video to capture the magical moment in the same way we’ve watched dozens of other parents do. I take a seat with Ryland, who seems to sense something big is happening, on my lap. The audiologist fidgets with a mechanical device and then turns to us. “Ready?”
I lean in and say softly to Ry: “Are you ready, Ry?” Ryland is tentative, slightly clinging to me. Jeff and I exchange a glance, and then Jeff tells her: “I think we’re ready.” I try to brace myself for what’s coming next, with no idea what it might be: laughter? Surprise? Screams? Tears?
The audiologist turns a knob on her machine, then immediately begins to clap her hands—loudly. With the intensity of her clapping and the acoustics in the room, each clap is like a crack of lightning in my ears.
Ryland’s body freezes. For these first couple of seconds, my mind races to translate what it means. Then, in a slow but desperate motion she grabs for me, grasps on to me, buries her head into my neck.
“Oh, sweetie,” I tell her, not knowing what to do: instantly, it’s clear that she is not a fan of the new sensation. I look to the audiologist with question in my eyes, hoping she will get the message. Do I ask her to stop clapping, or do we endure the discomfort of newness in hopes that Ryland will adjust? She continues to clap in a way that honestly might threaten to puncture even my ears. I expected us to use our voices, or maybe music—anything but this as the first sound our child would hear. I doubt this is a video we’ll ever post on YouTube.
We arrive at home, and this time I take the video camera as Jeff opens the car to pull Ryland out. As he unbuckles her car seat, now in more familiar territory, she seems more comfortable, more curious. In the driveway, Jeff holds her against him in the open, in the sunshine of day. Here Ryland’s eyes rise quickly to the sky.
“What does she hear?” I ask out loud, and then Jeff calls it.
“That’s an airplane!”
She points up to the sky and then smiles at Jeff, double-checking
to make sure that he hears it, too. She picked up on the sound even before we did.
Kobe exits the garage and bounces into the driveway to join us, barking and coaxing Ryland in a way that’s almost comically ceremonial, as if he too is aware that something’s changed since this morning. Ryland looks at Jeff and smiles, as if to say, “That’s our dog, Daddy!” She’s realizing that today, her relationship with everything and everyone in her world is new. She clasps her hand around her ear, as though she’s trying to touch the sound itself.
There is an instant difference in our awareness of Ryland’s presence in our home and family—she learns her name quickly and answers to it by raising her eyes to us even from across the room. We enroll her in a special needs preschool class, and she’s going on more playdates and is more engaged with her friends like Gianna, as well as her toys (though the ones that kick and zoom and flash still seem to attract her the most, which makes sense to Jeff and me since her deafness caused her to become a visual learner). She’s also more alert and involved in the fun and laughter at family gatherings, and no parent has ever been as pleased to hear their child say, “I have big booger!” than I am when Ryland constructs a full sentence to announce this to me.
After the first few weeks, however, we note that not all aspects of her adaptation seem to come so easily. There are ongoing red flags, like her refusal to wear her “ears” and the fact that every time she hears a loud noise her eyes blink very hard in reaction. It is heartbreaking, and as the weeks go on, Jeff and I are dissatisfied with the responses we’re receiving from her medical providers.
“She just needs to keep wearing them,” they tell us. “She’ll adjust.”
Eventually, we’ve had enough. We agree that it’s time to seek out an expert whose approach is as sensitive as a child in this situation needs, and we finally secure an appointment with Joan Hewitt, a world-class pediatric audiologist in San Diego. Our insurance won’t cover it, but we can’t take another day of seeing Ryland in such obvious discomfort.
Through her evaluation, Dr. Hewitt determines that Ryland’s devices have been turned up far too loudly, which is why the sounds she experienced on activation day were so incredibly harsh for her. We learn that excessive eye-blinking is an uncontrollable reflexory response to loud noises when the implants are turned up too high. As relieved as we are to find a source of the problems we had identified, once again Jeff and I find ourselves sitting in frustration and guilt with the knowledge that Ryland has been having these unpleasant experiences since her activation day.
Joan continues her work and soon presents us with one of the biggest gifts Jeff could ever dream for. Ryland’s been referring to him as “Wawa,” something that our previous providers told us was normal. Upon hearing this, Joan makes a few adjustments to Ryland’s program, and within seconds, she turns to Ryland. “Ryland,” Dr. Hewitt says. “Say Dada.”
“Dada.”
Jeff looks at me with wide eyes that are quickly welling up, his heart clearly melting. We’re decided: we will incur any expense necessary to be sure that Ryland receives the best care possible.
In early December 2009, we throw a second birthday party for her at Chuck E. Cheese. Macie joins us to help manage the scene with more than a dozen kids packed into our party space of two tables, one with a high chair for Miss Ryland at the head. Jenn hand sews a long-sleeved shirt, with the number 2 in a bold and blazing leopard-print pink pattern, paired with a handmade black-and-pink tutu and matching hair bows. (I realize only after we’ve arrived that I, too, have dressed in pink and black.) Ryland’s cochlear implants are colored the same flesh tone as her skin, and they’re so much a part of her now that only occasionally does it dawn on me that she’s wearing them. To me this party feels like even more than a birthday celebration. It’s Ryland’s official coming-out to show us all that she’s here to experience life just like every other kid does.
Our little guests can barely sit still long enough to get through lunch, and we load them each with tokens to go wild at the arcade games. I snap a photo of Rand helping Ryland to point a gun at an alien-hunting game, and another of Ryland “driving” Gianna inside a red convertible mechanical car. After lunch, I set down a cake decorated with a smiling sunshine and pastel flowers. Jeff holds Ryland and helps her to blow out the candles—of course it is he, Superdad and fire hero, who blows out the flame in the end.
On the ride home, in the passenger seat I spin around for a peek at her. In her car seat, she’s surrounded on both sides by gifts wrapped and tied in a bow in every shade of pink. Looking peaceful, her head is tilted completely to one shoulder—she’s fast asleep, with a pink binky in her mouth. I pull the camera back out of my purse and snap a photo. I have to remember this day that left my baby so blissfully exhausted.
Chapter Four
Clothing Catastrophes
We revel over the Christmas holidays, too, when Ryland can fully participate in her role as the center of everyone’s attention, but into the new year in 2010, the parenting challenges continue. I might embrace them more easily if I could be sure that they were the normal speed bumps of toddler development, but Jeff and I agree that something remains a little off.
We enroll Ryland in a school for the deaf and hard of hearing so that she can get a foundation for learning some of the basics that might serve her before kindergarten. I also love the idea of exposing her to other deaf and hard of hearing children, with and without cochlear implants, so that she can feel understood among a group of children and families who will be sympathetic to our struggles. In this school, we agree with the administrators that she should be placed in the verbal communication class in hopes she will learn to rely on sound rather than signs. It comforts me to know that the teacher is fluent in ASL, in case there is a communication breakdown.
At home, I work on Ryland’s speech and hearing around the clock, and Ryland’s speech therapist, Gwen, evaluates her speech production development each week. Gwen gives me a list of homework assignments that consist of various speech exercises, activities, and role-playing, and of reading Ryland a minimum of ten books a day. Gwen also gives me a folder with different articles and advice on how to achieve the best hearing environments. She says that if we work hard and help Ryland continue to communicate, we could possibly mainstream her into regular school by kindergarten. Jeff and I agree that we want her to go to the school in our neighborhood—the same elementary school that he attended—with all of the neighbor kids. It’s close to our home, safe, and rated among the best in our district. This is our goal, but we always keep it in perspective: it may not be possible.
Throughout every single day, I use speech exercises with Ryland—sometimes without her even realizing that I’m trying to teach her. We use flash cards with a reward system, hide plastic farm animals in boxes, make puppets and games . . . you name it, we do it. I feel like I’m under the gun to catch Ryland up to speed, especially because I still feel so guilty for the delay of her diagnosis. I have to make up for two years of lost hearing time. I’ve been around enough deaf and hard of hearing children to know that every one of them has different factors affecting their speech and hearing development, their success, and their school placement. Jeff and I want to make sure we do everything in our power to give Ryland the tools she needs. When she’s unable to conquer a certain sound or activity after the first few tries, I beat myself up with the fear that I’m not doing enough for her.
But I never give up. I take Ryland on outings all over San Diego—to the park, to the zoo, the beach, the famous San Diego County Fair, held in Del Mar—anywhere that I think might stimulate her curiosity to communicate and learn. I talk to Ryland every opportunity that I can, even when the conversation seems meaningless: “Mommy is combing her hair, brushing her teeth, and putting her shoes on.” She humors these efforts by granting me at least a couple of seconds of her attention, which, bless her, is usually enough to satisfy me with the knowledge that she’s absorbing language.
As ti
me progresses, Jeff and I are ecstatic that her verbal skills are beginning to explode. We begin to limit her sign language usage to certain activities like bathing, swimming, and early mornings, before we’ve put on her implants and she’s too sleepy to want to talk.
With Ryland gone at school every morning, I sometimes feel like I’m on a deserted island. Because there are postoperation costs like speech therapy that we have to pay out of pocket, Jeff is held up working more than ever.
With no one to talk to who can understand us, I’m at a loss for how to deal with two issues that Ryland’s still having: the first is that she’s wetting the bed every night—and sometimes herself multiple times a day, which is something we had been trying to train her out of since right around her second birthday, shortly after she had the cochlear implants put in. Her school is a diaper-free zone, and the classroom has a restroom attached directly to it, but it doesn’t seem to matter. I have no choice but to send Ryland to school with extra clothes every day; I figure maybe I screwed up by trying to potty-train her too early after the implants—maybe it was just too much change for her all at once—but part of me believes it’s deeper than that. No matter how many times we try to explain to her that it’s important for her to tell us or her teacher when she needs to go potty, it’s the one thing she can’t seem to catch on to and that continues to confound us.
Also, even after months have passed and Ryland is growing so well adjusted to most every other aspect of life with sound, there’s a tantrum I face anytime I’m trying to get her out the door: she refuses to wear the clothes that I pick out.
Raising Ryland Page 6
