I have hours of work to do today, and here I am with all my desk toys and hourglasses timing the tears as I sit at my desk and prepare to run into deadlines head-on at full speed because I can’t focus. Not yet.
It’s a big day in my home. My daughter heads to school today with her first Phonak CROS hearing aids.
I thought I had cried all the tears when I mourned her hearing loss. Last winter, she, like everyone else in our house, got Flu A. It was pretty miserable. For her, the virus lived throughout her body, burst both of her eardrums, and potentially settled onto the Cochlear nerve in her inner ear.
You may know we typically get middle ear infections. Hers were in the inner ear, and this particular nerve is the one that sends the brain audio signals.
We didn’t know until April her loss was permanent. Hearing tests, nerve tests, and MRIs confirmed she has total hearing loss in one ear.
We’ve all had to adapt. I’ve cried. She may have cried too, but man that little girl is strong. Lost, I didn’t know where to turn. I found a group on Facebook for parents of children with unilateral hearing loss or single-sided deafness. At first, I was sad. Many of the parents there had babies. I didn’t connect. I had a twelve-year-old. Then I searched a bit deeper and learned I wasn’t alone. There are other parents out there who have children who could hear when they learned to talk, could hear in school, then one day just couldn’t. It happens, and sometimes it happens after we learn to talk.
These parents helped to educate me and point me in the right direction. We started more conversations with her doctor. She wasn’t eligible for a Cochlear implant because she could talk. She was too old, and she was too young. I told her maybe when she’s an adult, technology will be even better than the current implants. Until then, we wanted her life to be filled with the sounds she grew up with.
So we chose the Phonak CROS and Phonak Sky V. The CROS gets sounds from her ear with loss and sends those sounds to the Sky V in her good ear. She won’t be able to ear from her deaf ear, but she won’t miss sounds from that direction. I imagine it might be like hearing with a great set of headphones where the sound feels like it’s in your head, and you can’t really tell from what direction it’s coming. But I don’t know what any of this is like really. She’s the soldier, not me.
In our first meeting with the doctor about the hearing aids, he showed my daughter ‘skin’ color hearing aids. Not wanting my daughter to fear what others thought or hide exactly who she is, I pointed to a poster on the wall and asked if there were fun colors.
My daughter said, “I like green/blue!”
I said to her, “If it was me, I’d go with purple. I’d want everyone to see them. Even just a hint of them if my hair covered them.”
She asked the doctor if she could pick two colors.
Today starts a new chapter for her. She’ll have to get used to how they feel. I’ll worry where they are all the time and how expensive they were not covered by insurance because…well, that’s me.
I can imagine her sitting at lunch surrounded by her friends taking in all the sounds around her. I hope she hears her teachers well. I hope she doesn’t have to deal with sensory overload as her body and brain adjust.
More than all the worry I have, I have the greatest pride in her. She handled adversity with a strength I couldn’t muster in myself.
Did you hear that? Deadline…knocking on my office walls.
Peace
~Stella