Try to remember leaving the maternity ward with your first child. There's no owner's manual or toll-free help line, just the weighty realization that you are on your own with the fragile little person whose car seat you can barely master. Now multiply that feeling by 100.
That's the way Teresa and I felt after learning that Sam was deaf. We didn't know a thing about deafness or cochlear implants, but in the 9 months between Sam's diagnosis and surgery we committed ourselves to learn. In the process, we empowered ourselves to make decisions with confidence as we navigated the maze of medical, bureaucratic, and practical issues that parents in our position must confront.
We also sought to answer more personal questions. For Teresa, there was a spiritual component. While dedicating herself to reading books and identifying resources in our area, she also held out for a miracle. Meanwhile, I wanted to understand why some people in the deaf community, including one of my coworkers, were so against cochlear implants.
Teresa is a stay-at-home mom who used our children's daily naptime as an opportunity to employ skills she developed as a former bank auditor. If someone at the county level couldn't answer a question about resources available to the deaf, she sought help at the state level. If the state was slow, she contacted a politician. My wife's tenacity is the major reason we became so informed, and I will always be grateful to Teresa for charting our path.
With a full-time job, I did less of the legwork. Still, I made sure my actions supported all of my wife's hard work and lessened the day-to-day stress related to it. We participated in online seminars and watched videos together, and neither of us attended any of the roughly two dozen formal and informal appointments we made without the other. Teamwork made us stronger and more effective.
One of the first lessons we learned was to be cautious about jumping on the Internet for quick answers before you know what you're dealing with. We found ourselves worrying about rare, heartbreaking maladies that we ultimately learned Sam did not have. The hospital proved to be a better place for answers. We met with a surgeon the same week that we learned Sam was deaf. From there, the hospital loaned us hearing aids and set appointments for an eye exam, a CAT scan, an MRI, genetic screening, and other testing associated with the implant process.
Teresa laid all the groundwork necessary for a teacher of the deaf from the state's Early Intervention program to start coming out to work with Sam on a weekly basis. She also began what turned out to be a lengthy process to get Sam his own hearing aids through the state.
The hearing aid trial period is a necessary step in the implant process. Given the severity of Sam's hearing loss, the aids didn't provide much benefit. To Sam, they were little more than something handy to grab and chomp on. But we persisted on the advice of a parent that we met. Sam needs to grow accustomed to this sort of equipment, and thankfully his desire to remove and eat his hearing aids eventually subsided.
The hospital gave us contact information for other families whose kids had gotten cochlear implants. Also, soon after Teresa contacted a state agency, we began receiving calls from people in New Jersey's Parent to Parent Program, a statewide network of parents supporting families of children with developmental delays, disabilities, and special health needs. Having changed the batteries, gone to the therapy sessions, and watched their children blossom, families with real-life experience proved to be our greatest resource. Just as there is a deaf community, there is a community comprised of parents whose children have implants.
People shared their stories and even welcomed us into their homes, filling us with hope. Through them, my wife and I realized that prayer, the blessed oil she applied to Sam's ears, and the trips to Saint Katharine Drexel's shrine would not result in Sam miraculously waking up one day as a hearing child. The cochlear implant would be Sam's miracle, and the kindness of other parents helped us see it that way.
About 5 months into the process, we decided to pursue a second opinion at another, larger children's hospital. I was reluctant to look elsewhere given the level of attention Sam received at the smaller hospital, where we ultimately stayed. While the second opinion didn't provide anything new from a medical perspective, I'm glad we went for it.
The hospital staff invited us to a picnic for families of children with implants. We mingled with parents, surgeons, audiologists and, most important, kids. We got to see and speak with children whose abilities astonished us. We also received firsthand reviews of a nearby school that specializes in kids with implants.
We spoke to parents about sign language. Teresa and I hesitated to pursue signing for fear that it could impede the verbal strides that we hope Sam will make after he receives the implant. The parents calmed those concerns, inspiring us to use basic signs that, at 11 months, Sam is starting to try himself. It's incredibly gratifying to see Sam give his best effort on the sign for milk or smile and kick his legs with excitement when Teresa makes a sign for cookie.
We're not the kind of people who are comfortable striking up conversations with strangers, but we've learned that being more outgoing can benefit Sam. Teresa befriended a young woman with an implant working in Walgreen's and learned that she's thriving in a local high school. After a call to a state senator's office went unreturned, I seized an opportunity to speak with him as he was waiting for his car at Jiffy-Lube, opening a relationship with someone who could someday serve as an important advocate for Sam's schooling.
A Learning Experience
We tried to take any opportunity to learn that arose. I didn't know what to think on my first day back at work when my deaf coworker wrote me a note that said: "I'm jealous. You and your wife are so lucky to have a deaf son." I couldn't begin to comprehend how someone could feel that way, so I accepted his subsequent invitation to learn more about the deaf world.
He emailed me a list of upcoming events, including an all-deaf poker tournament about an hour's drive from my home. On the Friday before the game, I told him I might attend, but failed to be definitive. The next day I felt compelled to go.
My coworker, not expecting me to show up, wasn't there. I was alone with perhaps 60 deaf people in a room filled with gestures punctuated with sounds of slapping and laughter, but no words. I felt very awkward as I struggled to communicate. After about 40 minutes, I found someone's hearing spouse, who volunteered to help me.
Person after person at the poker tournament told me the implant was a bad idea, but their reasoning did not move me. Their opposition seemed to be founded in dedication to the deaf community and in a strong belief that hearing loss is not an impediment. I understood and sincerely appreciated those positions, but the conversations didn't produce the most meaningful lesson of that day.
I was welcomed into this corner of the deaf world with open arms, yet it was clear that I wasn't part of it. I imagined the isolation that I felt as I milled around the room as an outsider would be something Sam could face on a daily basis in the hearing world if we didn't give him the chance to gain the ability to listen and speak. Being uncomfortable there made me very comfortable with our decision to pursue the cochlear implant.
Reviewed by: Steven Dowshen, MD
Date reviewed: May 2011