So when a deaf person hears for the first time by way of a cochlear implant that day is often referred to as their hearing birthday. It’s not the surgery day, but the activation day and it’s special.
We don’t actually celebrate SJ’s hearing birthday. I’m not against it but SJ’s path to hearing took a lot longer than we expected. She had her first surgery for her right ear on November 5th 2012.
Her activation day was right before Thanksgiving. We were eager to see her respond to sound and anxious for her to say her first words. We had our video camera in hand ready to capture the life-changing moment, but were left disappointed when she didn’t seem to really enjoy this new world of sound. Even worse, she didn’t seem to react at all.
In the office that day we were given a giant case full of all the pieces and instructions that went along with SJ’s new hearing device and we were sent on our way. SJ immediately rejected the idea of keeping that magnet on her head so for the car ride home I just held the processor in my hand and SJ was more than content to ride along in silence in the backseat. As J left the parking lot I started crying looking down at this “medical miracle” in my hand knowing that I was holding something worth thousands and thousands of dollars. I was so overwhelmed. What if it got lost or broken? How am I supposed to be qualified to deal with this? Why doesn’t she want to wear it? At that point I had so much to learn about the difference between reusable and disposable batteries, how to adjust the magnet strength, locking and unlocking, using the dryer etc. It felt like too much.
“What am I supposed to do with this thing?” I mustered out through my tears. I wanted a practical solution at that moment because I didn’t have anywhere to put the processor other than back in the giant case which was in the trunk. I was also asking a deeper question: What am I supposed to do with this thing… over the next few years and for the rest of her life. As doubts and fears swirled through my mind I felt the weight of the world on me wondering if my daughter would ever be able to hear and speak and if not would it be my fault? J was dealing with the pressure in his own way and basically responded in a short tone that implied that we needed to suck it up because if we fail everything falls apart. A fight erupted between us and for a moment I was glad that SJ wasn’t able to hear.
I thought about all the videos I had seen online of deaf kids and adults hearing for the first time and it was always so magical. Here we were in an emotional minefield that was anything but magical.
After that, all the questions poured in through social media, texts and people in person. Everyone wanted to hear about the big moment where SJ could finally hear for the first time. I managed to put a positive spin on it, explaining how it wasn’t this instant transition but something we would see her respond to gradually. I left out all the crying and fighting and how our two-year-old pretty much hated the entire process.
We still had hope though. We knew that the cochlear implants themselves were only a part of the puzzle and that SJ needed teachers, therapists, and a team that would allow her to decode all these new sounds and learn to piece together her own words. That’s when we sought out Ohio Valley Voices, one of the greatest schools in the nation that helps deaf children speak. She started at the beginning of 2013 and had cochlear implant surgery on her left ear a few weeks later.
While I loved the school I was still anxious for her first words because her third birthday came and went and we had yet to really see much progress. Then one of the most gut-wrenching moments of the whole journey happened when some of the directors sat down with me to inform me that they didn’t think SJ could really hear. What!? I said. She just had a majorly invasive and wildly expensive surgery which by the way eliminates any residual hearing she did have. It’s supposed to be worth it because you gain the ability to hear with a cochlear implant, but even if she was profoundly deaf at least she could hear fireworks or loud music. Now she was down to NOTHING! We put it ALL on the line and I was being told she still couldn’t hear! They could see potential and effort on SJ’s part but something just wasn’t right. This news terrified me. The woman at the school explained that SJ could hear some really loud deliberate sounds like a chip bag being crinkled next to her ear. That’s reassuring I thought, If she is super hungry maybe she will be able to hear if someone has chips nearby. In all seriousness though, my heart plummeted at that moment.
The woman seeing the concern on my face reassured me that there was hope. She said “We think she could hear if she just had the right mapping. We recommend requesting that her audiologist turn up the volume on her devices.” Okay, I thought and I caught my breath a little. That sounds simple enough. We can do that. The problem was SJ’s audiologist was self-proclaimed “conservative” with mapping and didn’t want to overwhelm SJ with too much sound. I mentioned this to the school and they sent an email to our audiologist explaing why this was critical and recommended we get her ENT/surgeon in on it as well, which I did. Even then she barely changed anything.
After this very discouraging failed attempt, the director of Ohio Valley Voices had a special meeting with me and with an urgency she explained how the ideal window of speech and language was closing for SJ. I started to panic again. I felt like I was failing my daughter and had no clue what to do now. That’s when I was told that the audiologist at Ohio Valley Voices was going to take on SJ’s case pro bono (because we lived out of state at the time and our insurance wouldn’t cover it). This was a huge deal and showed that we were at the right school. They had a genuine concern for our daughter and would do whatever it takes to help her. They knew that we were living in my brother’s basement with an income below poverty level and they stepped in to help anyway. I wasn’t there when they remapped SJ but the results afterward were evident. I tear up just thinking about it. Between roadblocks with hearing aids, insurance, and doctors it felt like it was never going to happen but as soon as I opened the door to see SJ after this mapping I could tell that she HEARD the door then she heard me say her name! So many times I went in to pick her up from the nursery at church and I always said her name before she saw me in hopes that she would turn and run toward me, but she never did. For so long I wondered if she would ever hear music, or animal noises, or the words “I love you” then all at once March 12, 2013 she finally did.
Some sounds scared her a little bit and she did (and still does) like to take occasional hearing breaks, but it’s been an incredible journey. She said her first word shortly after that mapping too. She said “up” because she wanted to go upstairs. I asked her to say it again wondering if I heard it right and she said “Up” and she pointed to the stairs with her little finger in the air. I couldn’t hold back the tears of joy. We waited over three years for her first word and it finally happened. It was a dream come true. And that is the story of how SJ heard for the first time.
Fast forward to 2019.
Spring break was this week so SJ and my niece got to do an overnight with my mom. While there, the girls started to explore some of her makeup and jewelry. The idea popped in their heads that maybe they could get their ears pierced. My mom called and asked for my permission assuming I would shut the idea down because I am such a planner. Except I thought it sounded fun. Why not get your ears pierced on a whim with your cousin?
While I was still on the phone my mom turned to the girls and said “She said yes”. Immediate high pitch screaming erupted!
It was so cute. SJ’s ears have been such a focus because of her deafness. They’ve been sliced, stitched, examined through MRI and now she literally has flashing lights on them. I find it interesting that here we are 6 years after her hearing for the first time and her ears were the focus again, except this time it was for a different reason.
This time it is all about her being a girl wanting to have earrings like her grandma. This time was so typical and sometimes the typical is extraordinary!
The photos are of the girls day out. They went shopping, had donuts, pained pottery and got their ears pierced. The text is what SJ sent me from my mom’s phone. I love how she spells pierced, P-E-A-R-S.