Raising Ryland
Page 5
But late that night, I see for myself how upset my mother-in-law truly is when she accidentally copies me in on an email to a friend who’s the president of the auxiliary for the children’s hospital in San Diego. “We are really frustrated right now with what is going on with our grand-daughter, Ryland,” she writes. “She is not hearing. She is also going to be 14 months old and she hasn’t made any attempt to talk or make consonant sounds.”
In the email, I pick out phrases like beside ourselves with worry and our family is in such a state of unrest. She continues: “Does my 20 years of supporting Children’s Hospital give me any sort of edge to get this testing done sooner? Do you have any pull?”
There’s nothing overtly offensive in the email, but something about it makes me feel guilty. The urgency of her request causes me to beat up on myself even more: how have we not seen the signs up to now? I’ve tried to be such a “hands-on” mother. I’ve stayed at home so that I can do everything to take care of her: I breastfed her, prepare homemade baby food, I sit on the carpet and play with her for hours. We’re so involved in her life, yet we feel as though we’ve failed her in this moment in a way that may be irreversible. After I let Peg’s email settle in, I make a decision never to let something like this happen again.
I also realize, quickly, that if I’m going to be strong enough to see Ryland through whatever’s ahead, then I have to start to control my emotions and stop taking things personally—now. Ultimately, Peg’s plea—along with our consistent phone calls to the audiology department every morning to see whether they’ve had any new cancellations—is successful. We’re able to secure an appointment with an audiologist at the children’s hospital in the first week of February. I am pure anxiety—both nervous and excited, just to get to the bottom of it . . . to know for certain whether there’s an issue, so that we can set up a plan of action.
In the meantime, Jenn and I arrive early at So Childish to secure a spot in the front of the classroom. After a couple of weeks, I’ve learned everything I possibly can . . . but Ryland is more than a year old, and I know from what Jenn and I have chatted about that it’s necessary to work constantly to increase a child’s capacity for language. Very soon, she could need more signs than “eat,” “milk,” and “daddy.” If there’s a chance that Ryland’s primary language is going to be sign, then I need to begin to learn to speak it—and teach it, to her and the whole family—fluently.
In need of something more advanced, I sign up for night classes taking American Sign Language at the local junior college. My brother-in-law Scott signs up with me, and since Jeff is working more often than not, Peg offers to watch Ryland on the nights we have class. She also manages to learn the entire baby sign language book before anyone else does, including me. It warms my heart to witness her incredible dedication to Ryland’s future.
Every time Scott shows up, he signs Hello—a simple forehead-salute of the hand—which drives Ryland wild with laughter. One night, when he steps into the kitchen, she raises both hands and makes fast circles in the air, calling out.
“What is it, Ryland?” I ask her, both using my facial expression and the sign.
Again, she raises both hands and draws wild circles. When Scott comes back into the room, she stops the sign, giggles, and makes it again. I mimic the sign. “That’s your uncle Scott!” She does it again, then goes crazy with claps and laughs. Then Scott makes the sign, and again, Ryland laughs like I’ve never heard her laugh before. Both awestruck, Scott and I exchange a glance, until I can muster the words: “I think that’s her sign for Uncle Scott!”
Both to practice communicating with my little girl and to keep myself busy, in the days leading up to Ryland’s appointment with the audiologist I work intensively at home to teach her sign. During these sessions, she is sometimes frustrated and aggressive toward my intent to teach her so much so quickly, is almost visibly resentful that we have to do this at all, but when she doesn’t have my full attention, she is extremely clingy. All of it makes my heart cave in, time after time, and I learn to take moments in these days when we stop everything. I pick her up, and we sit on the couch or the mint green baby glider in her nursery, and I hold her. I caress her hair. Even if she can’t hear my words, I tell her: “It’s okay.” I hum “Jesus Loves Me” like my mom used to sing to me when I was little, while I press her open palm to my throat and squeeze her little body against my chest. She seems to melt into the vibration of my voice coming through my throat and chest, and, even if just for a minute, I know that she understands that she is loved. I remind myself often that while my intention is to get her ready for her life, what Ryland needs most of all is her mommy’s love.
One night, Jeff cleans up after dinner while I put Ryland down. Then we meet in the living room and begin to research what our options could possibly be if indeed Ryland is deaf. On YouTube, we stumble on a slew of videos of deaf children hearing for the first time after having had a procedure done to make it possible for them to hear. We both watch, our eyes glassy with tears, as the infants and toddlers and school-aged children and even one teen hear their parents’ voices for the first time, or the sound of nurses clapping their hands and singing the children’s names, or the click-clack tumble of Legos falling on a wooden desk inside the doctor’s office. Some of the smaller children don’t react at all, as if perhaps things were more peaceful in their minds before they were exposed to sound. Others call out or clap in sheer excitement, a new world having just opened to them.
Jeff and I sit, shoulder to shoulder, silent tears streaming down our faces. I have so many questions about cochlear implants zipping around my mind—Where is the best place in our area to have them done? Can any deaf child receive them? How much could they possibly cost, and would we ever be able to afford them? But the answer to one question is clear, just from the expression on my husband’s face: we both want to give Ryland the chance to hear.
The second week in February, Jeff and I drive Ryland to her official hearing test—the BAER (brainstem auditory evoked response) test. For this test, Ryland needs to be sleep-and food-deprived so that they can sedate her safely and quickly. The only appointment we could get isn’t until the afternoon, so we spend the morning being very creative to keep Ryland awake until it’s time to leave for the hospital. We also head to Chuck E. Cheese to provide her with plenty of stimulation with the games and robotic puppet shows so that she’ll stay happy until the appointment, but ready to zonk out when it’s time for the test.
It’s just Jeff and me in the exam room when the audiologist enters. She’s friendly enough but focused on her task. She administers a sleep aid and waits for Ryland to fall asleep completely before she places electrodes on Ryland’s scalp and then to each earlobe. With her back to us and with Ryland sleeping peacefully on the hospital bed, she begins to run the hearing test on Ryland. “It will take a little over an hour for the machine to monitor Ryland’s neurological brain responses,” she says. “I’ll step out, but of course you can stay with her.”
At this point, Jeff and I have already accepted the worst. Even without the diagnosis, we know that Ryland is deaf. We’ve already grieved the reality of our situation, and we’ve spent countless hours researching cochlear implants and the overwhelming number of steps necessary to obtain them. All we want now is the “official” news so that we can move forward with the time-sensitive process.
When the test is complete, the audiologist reenters. She’s quiet, she folds her hands, she seems tense. “The test results show that Ryland isn’t hearing anything except sounds at the top end of the spectrum,” she says.
We sit calmly, and listen to her continue.
She looks at the ground and then squarely at us. “She is what we would consider to be profoundly deaf,” she says.
Looking back, our lack of tears or emotion was probably a shock to the audiologist. Inside both of us was a strange comfort in the confirmation of what we already knew to be true.
“Right away we’ll refer
you to a pediatric ear, nose, and throat specialist. If there’s any good news in this, due to the level of Ryland’s hearing loss, it’s safe to say she would be a candidate for cochlear implants,” she says, “as long as she has the physical anatomy to receive them.”
“Determined through a CAT scan . . . right?”
“That’s correct. A CAT scan will confirm this.”
CAT scan. I picture my baby asleep inside one of those horizontal, claustrophobic machines while a computer scans her brain. It’s an unsettling thought, but I know it’s one of the many necessary steps that we need to take.
As soon as we return home, Jeff and I continue with our research. A prevailing issue among parents with deaf children who have shared their experiences online is that their children who have received cochlear implants are often cast out of the Deaf community (who capitalize the letter D as part of their group identity). Some members of the community say that if a child can hear now, even if they were born deaf, then they simply don’t belong. Everything about this experience is emotional enough, and the last thing I want is for my innocent little girl to gain hearing only to learn that she has instant enemies in the community whose language was once her only hope to communicate. I know that if I’m going to get through it in one piece, I’m going to need to surround myself with support. When I share this with Jeff, he immediately agrees that it would be helpful to reach out to other parents who might be able to share some wisdom.
“We don’t want to allow our egos to get in the way,” he says, acknowledging that we can’t and won’t ever know everything.
In the times that we’ve turned to parents and friends for a little guidance, we’ve learned that people who have experienced similar challenges before can provide some of the most important lessons we need. We’ve used our own judgment and life experiences to help us make the best decision possible for Ryland, but now it’s time for us to allow ourselves to be vulnerable—even to strangers who might understand our situation better than we do.
Within a week of receiving Ryland’s diagnosis, I locate a mom named Susan who used to head the support group in San Diego for families of children who have undergone cochlear implant surgery. I send her an email, asking her if we can plan to meet sometime. “It would be awesome to speak to some other families with hard of hearing children for support,” I write to her. “We think it would really help us through this.”
Susan responds, saying that her three-and-a-half-year-old son was diagnosed through his newborn hearing screening, “so we knew he was deaf right away,” she says, sharing that when he was six months old, he was implanted bilaterally simultaneously (from my research, I know that this means in both ears, at the same time). “He hears and speaks beautifully,” she says, “very instinctively and naturally. There is hope.”
There is hope.
The busier I get, the more energy I find to get everything done. I start a binder to begin to keep track of all the doctors’ appointments and meetings with organizations that friends of friends have been recommending for us. Within a few weeks, Ryland has a CAT scan completed, and the news is uplifting: Ryland continues to be candidate for cochlear implants.
First, she’s fitted with hearing aids, which she’ll wear for three months—a requirement from our insurance company, based upon Food and Drug Administration recommendations, to prove that a child doesn’t benefit from the hearing aids and thus needs an invasive surgery like cochlear implants.
I learn the instructions (and the tricks) to care for the hearing devices. Every day, I test the batteries and clean the devices with alcohol swabs. I also take them off Ryland before we drive in the car. Otherwise, I’m forced to pull the car over when I hear the high-pitched screeching sound of hearing aid feedback as I look back to see Ryland sucking and chewing on one of the aids.
To add to the chaos in the short term but to aid with it in the long term, Jeff and I make an offer on a house—a bright, spacious, three-bedroom ranch with a sprawling front yard—that’s just a couple of minutes from his parents’ place so that they can be closer to help with the baby.
In spite of the diagnosis, throughout March things fall into place as smoothly as we could possibly ask, except for the most critical detail, which is to secure a date for Ryland’s surgery. Every expert we’ve seen has told us that time is of the essence in implanting children with these cochlear devices, simply because after a certain stage in their toddler years, they can lose the ability to learn verbal language so that they can speak it normally. With each day she is missing the most critical childhood developmental stages in relation to hearing, speech and language, and communication; also, the area of the brain responsible for hearing, along with the auditory nerve, has gone an extensive period of time without the beneficial stimulation that allows the brain to evolve and change and become less responsive to any sound in the future.
This, of course, spurs my worry and makes me all the more anxious to schedule Ryland’s surgery. With the hope of expressing the seriousness of our intention, we decide that Jeff will address it with the pediatric ear surgeon who heads the hearing and cochlear implant program at the children’s hospital. In early April, he emails her. “We were given an anticipated date of some time in July for the procedure,” my husband writes, “which seems much too far away for my family and me. My question for you is, can we get the surgery date scheduled now to avoid any delays, with the possibility for Ryland to be implanted in June? If the delay is for insurance reasons, then if necessary, I will be on the phone with them every day to make sure the approval process moves along.”
Indeed it was an insurance issue, the doctor replies in a kind-toned email, but she agrees to set a date for May 28—the end of the month, but much better than July—so that things move along somewhat quickly when our insurance is approved. In the meantime, we do everything we can to push it all forward: Ryland is able to sign more than two hundred words, which will come in handy even after her surgery as she learns to speak. A large part of my days during this period is spent sitting on the gridlocked Southern California freeways, traveling from preoperation appointments to a speech therapist to meetings with allergists who are trying to solve a problem with Ryland’s middle ear pressure that the ear, nose, and throat specialist has discovered, while I also try to get things organized for our move. During these drives, I call Jeff—sometimes as I’m wiping away my tears. “We’re doing everything we can for her, Hill,” he says. “We have to stay strong.”
Ryland is such a trouper on these days that I always reward her with a Chicken McNuggets Happy Meal. The same question always comes through the drive-through speaker: “Is the Happy Meal for a girl or a boy?”
“It’s for a girl.”
I always unwrap the toy from the plastic and hand it back toward Ryland, bouncing and twirling the plastic Hello Kitty figurine or the Littlest Pet Shop animals under their pastel salon hair dryers. No. Ryland takes the toy in her hand and promptly throws it back at me. I cannot figure it out—is it because she wants a toy that’s more visually engaging, with flashing and motion? One afternoon in the first week of May 2009—after I’ve just found out that Ryland’s surgery on May 28 has been rescheduled until late July, because our insurance company insists on adhering to the three months hearing aid trial that the FDA recommends—I’m about to lose it. Fed up, I sign furiously to Ryland: “What is wrong?!”
She stares at me. In the silence between us, my heart softens at the awareness we seem to share: our situation is just not easy.
By late May, we’re moved into the new house, where Ryland and Kobe love all the space to play and run. As much as we love our new home, Jeff and I are becoming increasingly frustrated and angered by our insurance company’s decision to delay Ryland’s surgery. We vow to do what we do best: fight for our child.
Despite our surgeon’s caution that it would be a first for her to see an insurance company agree to shorten the three-month time frame, Jeff decides to take them head-on. He drafts up a le
tter and provides factual evidence that our child will never benefit from hearing aids. He makes it clear that delaying the surgery has the potential to do more harm than good.
Within two weeks, we receive the news that the insurance company has agreed to shorten the time frame. We’re elated—we’ve won! Our surgeon is floored.
While we’ve gained only a few weeks’ time, this is a monumental victory for our family, and proof that at times we’ll need to challenge the medical providers to ensure that our child is taken care of. Finally, one more detail has been settled: Ryland’s surgery is rescheduled for July 1.
One night after Ryland has gone to bed, I send out an email to all of our friends and loved ones to update them on the move, Ryland’s surgery date, and the progress we’re all making as we learn American Sign Language. One response to the email happens to be my favorite—it’s from Monta, who says: “It sounds like things are really moving ahead, and I’m happy to be on your mailing list! Hillary, if you would ever be interested in teaching classes for me someday, let me know. You will be especially qualified to teach other parents to sign!”
She signs off with a smiley face, and for the first time, it occurs to me that maybe all this pain and struggle will bring me to help other families one day.
WE PREP FOR the July 1 procedure with an overwhelming number of appointments and tests. In the weeks leading up to the surgery, we’re so intent to keep Ryland healthy that we quarantine her from other children. Two days before the procedure, probably because of stress, it’s me, and not Ryland, who gets sick with a cold.
Out of worry for Ryland, we send her to Jeff’s parents’ house. This wasn’t the plan, I think to myself. Being without her makes my heart ache so deeply, but I know I have to protect her, even if that means we have to be apart.
When the morning of the procedure arrives, Jeff and I wake before dawn with my parents and drive to pick up Ryland down the street at Peg and Rand’s. We videotape the trip to the hospital. I sit in the backseat of the car between my mom and Ryland, who’s smiling and giggling. She has no idea that this will be the hardest day of her life, and therefore, of mine and Jeff’s, too: this procedure will take six hours, though the doctors have told us to prepare to be at the hospital for as long as twelve.