There are a bunch of significant dates in Owen's little life. The day he was born, the day he didn't die, the day he finally came home. And this day stands out; the day we found out he was losing his hearing.
I was so pissed. I don't like surprises. Despite being warned by the entire surgical team that he was at a "Very high risk for a significant hearing loss" (due to gentamicin and ECMO lots of both), I still didn't see it coming. He was at a very high risk for being dead and that didn't happen.
He'd made it through that scary first winter with several trips to Children's but no admissions. It was Springtime, he was "healthy" and happy. I walked into that audiology appointment fully confident that his hearing was perfect. He was saying a few words, he loved music.
The test was kind of fun. Owen sat on my lap while the audiologist watched his reactions to certain sounds. It was my first test, I didn't know what normal reactions were, so even after the test, I was shocked when the audiologist told me,
"I'm worried about Owen's hearing."
She jumped right into hearing aids, sign language, speech therapy.
She handed me The Folder:
As if your child wasn't fucked up enough all ready, now he's Deaf!
The folder was full of helpful resources for raising a child with a hearing loss. Educational options, hearing aid providers, sign language classes. I was still too pissed and shocked to absorb any of it. I got out of there as fast as I could.
I was proud of myself for not breaking down until I was alone in the parking garage elevator. I called my sister in law sobbing on the way home,
"But he loves music! He's talking! The damn barking dog wakes him up WAHHHHH!!"
I thought about his speech and knew it was true. He could say "Mama" but "Dada" had become "Baba". He'd stopped saying "Nana". Things I thought were just normal baby things were happening because he wasn't hearing some sounds.
I got over myself quickly. On the way home I stopped and got a Sign Language dictionary. I started signing with him right away. I started yelling at him and some sounds came back. Speech therapy started within a month and he got his hearing aids that Fall.
I learned about Deaf Culture.
Learning about Deaf Culture and the Deaf Community was comforting. He didn't have to be the scarred up, tube fed kid amongst all the typical kids. He'd be surrounded by kids who were at least Deaf like him, his other differences wouldn't matter. He'd have Deaf adults around him to serve as role models. He'd speak and sign and hopefully have both the Hearing and Deaf worlds open to him.
I think we're doing ok so far. He has Deaf and Hearing friends. His language is pretty funky but his speech is excellent. He knows more sign than I do. He still loves music.
He asks for his hearing aids and tells me when they're not working.
He likes to be Deaf Kid sometimes and not wear his aids.
He's an awesome sleeper.
He's easy to spy on.
He's wicked fun to sneak up on