Sound and Silence
and as all the scary syndromes could finally be ruled out thanks to genetic testing, three EKGs, and an eye exam at DHMC, Geneva's being deaf felt less and less like a big deal. In fact, we were thrilled when a clinician from DHMC called to tell us that Geneva had a Connexin-26 genetic mutation. Connexin-26 is the most common cause of nonsyndromic deafness in Caucasians. It meant that Geneva would likely have no other related health problems. We were giddy with relief and smothered our "little mutant" (as we jokingly called her) with hugs and kisses. Sure, other people would still refer to her deafness as "devastating," but I had spent enough time at DHMC and seen enough sick kids to know what devastating is.
During the five months between Geneva's initial diagnosis and that phone call from the genetic consultant at DHMC, I had a few minor breakdowns. I'd feel pangs of jealousy when I'd see other babies turn to the sound of their mother's voice. I'd hit emotional lows when I'd notice some small piece of life that I assumed would not be available to my daughter—like the sound of a bird call or the purr of a cat. But my grief was short-lived. I accepted and began to celebrate Geneva's deafness rather quickly, thanks in large part to the parent advisor who was assigned to us by the Vermont Center for the Deaf and Hard of Hearing, a state agency.
Geneva was diagnosed on a Tuesday in early March. Just three days later, that Friday, our parent advisor, Tami Trowell, drove to our house to meet with us. Her warmth came through immediately as she told us about her own son, who was born deaf in 1984. Later during that first visit, when I lost the firm grip I'd had on my emotions, her eyes welled up, too. She hugged me and told me everything was going to be okay. I realized then that Tami was the answer to a plea I hadn't yet uttered. She became my guide, my mentor, in this unexpected journey mothering a deaf child.
For a couple of hours every week, Tami
helped answer my questions about deafness: Will Geneva speak? Maybe, if she has some access to sound. Can hearing aids help someone with her degree of deafness? Maybe, but probably not. Geneva received hearing aids about a month and a half after being diagnosed, and my husband and I did our best to
keep them on her floppy little ears. But we suspected that the aids weren't doing much for her, except maybe offering some stimulation to her auditory nerve. That suspicion was confirmed when a freight train passed not more than 50 feet behind her, blowing its horn, and she remained oblivious.