I thought it was odd when Grace tugged on my arm and very articulately asked me to “stop saying mmhmm”. It was sweet and cute but she was serious and a little bit sad so I listened and tried really hard that week to be mindful of clear spoken language. I stopped giving that token adult noise that’s meant to be agreeable even when you aren’t paying close enough attention. But in the back of my heart, I was worried.
I thought it was odd when Grace started hopping off the couch and pressing her little finger to the television volume until I could hear it from outside. It’s too loud! I would say and she would shrug and tell me it was low, touching her hearing aid absentmindedly.
I thought it was odd watching Grace turn an adults face toward her hearing aid and ask them to repeat themselves. She has a stern way about her that reminds me of my Dad.
It was odd to see her so out of step at soccer and swimming. Usually able to get by and manage ok but lately just so dazed and confused she looked like a zombie. She kept shrugging and glancing at me, waiting for a sign cue or a directions she could hear and follow.
It was odd that she was ignoring me, everyone really, and doing her own thing. It was odd to see her frowning and struggling. But she’s my need-for-downtime kiddo so I pushed it to the back of my mind.
It was odd (and to be completely honest incredibly frustrating) to constantly hear “what? What? WHAT?” After every question or comment or sentence directed her way. “what?” she’d say all. day. long.
Each odd thing got a little bit less odd as I let it sink in that her hearing loss was progressing. I knew it was even as I typed to family that it could be fluid or wax or an infection or a 4 year old acting their age. On the morning of her school hearing test she just bopped out the door THRILLED TO PIECES that she’d get to see her audio friends. And I decided not to go to the gym or shower because I knew my phone was going to ring.
It did and I listened to how much hearing was lost and what the plan should be. I laughed and chatted and tucked the phone against my shoulder and cheek so I could finish loading the dish washer as my mind raced. No big deal I kept telling myself. I kept thinking back to her birth how I’d bartered with God before her brain scans. I’d prayed and prayed and asked over and over for Grace to *know* I loved her. I know without a shadow of a doubt that that girl knows I love her. So all bets and requests with God are off now. I haven’t been praying anything specific for our fierce four year old who drives me bonkers on the regular because I consider my prayers answered.
We were so comfortable with her hearing aids, her school, her fantastic language development both ASL and spoken English. Our darling second born daughter- one purple hearing aid, brown eyes, brown hair. 3′ 2″ tall. Loves spider man and ninja turtles and Judy Hop Cop.
But now what? What’s next?
We are so lucky that Grace is in the environment she’s in at school. She is completely surround by people who LOVE her and all these awesome kiddos like their own flesh and blood. She spends her days with experts in speech therapy and ASL. Her teachers are exceptional and the services offered on-site are phenomenal. She is bright and glowing when you see her there. So proud of her special place. The care and kindness and genuine love she has for all of the kids she knows there is enough to reduce any Mama to puddles.
So for now Gracie’s hearing aid can be adjusted to accommodate this new loss. We’ll see how she does with the adjustment and take it a month at a time. She will most likely get another aid fitted on the bad ear side again to keep her nerves alive for cochlear implants. We have no idea what the future holds but maintain that our best decision as parents is to give Grace every available opportunity to communicate as she pleases. *If* implants become something she could benefit from we at least want her nerves healthy and functioning so that would be something still on the table as an option.
Grace knows she is deaf. She is proud of her Magic ear and loves to teach people sign. She knows all about her friends with implants and loves her friends with no hearing assistance at all. She will speak to you if that’s your preferred language or she will sign to you if you prefer to speak ASL. We don’t sugar coat that some things are hard for Grace. Soccer in an open field. Swim lessons in an enclosed echoey room. Finding my voice when we’re out somewhere like the zoo. Hearing me spell words. Understanding a book when she can’t see the readers face. Wandering too far in the grocery store, unable to hear my voice to get back. But she loves to teach people about herself and we love to let her.
Hearing loss for Grace is not an illness. It is not a virus that will clear up. She isn’t sick. There is no vaccine or cure or remedy. Hearing loss for Grace is a challenge she will continue to learn to navigate with lots of love and support. We live in a world full of noise and sound and that world changes drastically when you lose you ability to sense it. I’m not sure how Grace will feel about her abilities as she gets older but I hope she remains proud, confident, kind and determined for the rest of her life. As she is now may she ever be forever.
My little bug.
Love you Grace.