I couldn’t shake the feeling there was something “wrong” with my daughter throughout my entire pregnancy. The ultrasounds and tests came back normal, but I still felt a nagging dread. In my last trimester, I had repeated bouts of preterm labor that lasted hours and hours and I was certain she just needed to come out…that she would be much safer in the world than in my womb. So when Ruby was born and repeatedly failed the newborn hearing screen, I was actually relieved. Hearing loss? That was it? We could handle that. She was healthy and beautiful and we could do everything in our power to arm her with all the tools she needed to be successful in spite of ears that weren’t fully functional. Once we had confirmation of the hearing loss we already knew in our hearts she had, we set out to prepare to help her in every way we could. We worked with the local school system and were matched with an incredible deaf educator who was an absolute gift in helping us navigate everything. We started learning and using sign language. We pursued amplification options. And she was thriving. By six months, she had started signing herself, and watching her communication flourish made my heart swell with pride. By a year, she was stringing several signs together.
A few months after her first birthday, she would seem agitated and start looking around and signing “helicopter.” A few months after that, she started to frantically sign “helicopter ouch” and “helicopter out.” Desperate for an answer to what was troubling her, we took her to various audiologists and ENTs. Finally, when she was two-and-a-half, we learned a name for the sound she insisted she heard, but no one else did: tinnitus. We also learned that there was nothing we could do but distract her from it. A cochlear implant could also provide relief, but insurance would not provide coverage in her case. Around the same time, I clicked a link I saw on the Hands & Voices Facebook page I’d recently liked. It was a video of two young girls beautifully signing the lyrics of One Direction’s song “Story of my Life.” We’d just gotten an iPad and I pulled up the video to show Ruby. She was immediately enthralled. Ruby has never been one to sit still for long, but before the song had even fully ended, she signed “again.” She probably watched it ten times in a row. We soon realized it was exactly the distraction she needed when her ears were bothering her. And then she started asking for it on her own when the tinnitus was upsetting her.
A couple months later, on a whim, I emailed the publishers of the video – two young girls named Ren and Keely – to thank them for making and posting what had become such a wonderful distraction for our daughter. Half-jokingly, I mentioned Ruby’s obsession with the song “Let It Go” from Frozen, and that she would love to see an ASL translation of that if they were ever looking for ideas. I was completely floored when I received a response back – just days before Ruby’s third birthday – that they loved the idea and planned to make a video. I still can’t quite believe that two teen girls would take the time to make a video in the freezing cold for a toddler they’d never met. Ruby has watched all of Ren and Keely’s videos more times than I can count. I joke that she’s probably responsible for at least a third of their nearly 200,000 views on the “Let It Go” video. As we’ve watched them together over and over (and over), it’s occurred to me that these videos are invaluable not just because they offer such a wonderful distraction for our daughter. I’ve noticed my little girl lighting up and excitedly pointing out the girls’ hearing aids and eagerly showing off the new signs she’s picked up. And I’ve realized that the videos showcase something I hadn’t thought of when I was preparing her toolkit: positive role models. Ren and Keely (and the umpteen other ASL song translators we’ve since found and watched repeatedly on youtube) have helped Ruby find beauty in what makes her “different.” They’ve made her proud of who she is. She looks up to them, and while she’s never met them, she considers them her friends. I knew it was important for Ruby to meet peers who were deaf and hard of hearing, but I hadn’t considered the impact connecting her to deaf and hard of hearing teens and adults would have.
I’m so thankful for Hands and Voices and for all the incredible role models who serve as such wonderful inspiration for our family without ever knowing it. Jess Jacobsen-Buckley