On shaky grounds, between sound and silence

Fiona goes to the bookshelf and grabs storybooks and lays them on the floor in a pile. She counts out seven books, “one, two, three, four, five, sign language?” she puts the sign language book back on the shelf, “I can hear now, we don’t need sign language” she says. “But it’s still good to practice” I say. But I don’t push it. We’ve just gone seven whole days in a new and scary world where Fiona could not hear hardly at all. She got a swimmer’s ear in her right ear and couldn’t where her hearing aid and now, her left ear has lost so much hearing ability that even with her left hearing aid in Fiona could not hear me, or anyone. At school the teachers tried with the FM system and she still couldn’t hear. I scrambled to use my signs I knew in ASL, but had to revert to SEE sign, because that’s what we know right now. We are in the process of learning ASL. During the past week I tried to teach Jack, Fiona’s twin brother a few signs, but more importantly I had to teach him that Fiona could not hear him. He couldn’t understand it. I watched their relationship degrade before my eyes.

“You don’t get it” Fiona said to Jack on the second day of this new deafness she was experiencing.

“You don’t wear hearing aids, you don’t get ear infections” Then she turned her back on him and started playing with her dolls and toys by herself.

Jack was upset, as the days progressed, he started acting out. Maybe he was feeling jealous because I had to spend so much time with Fiona. At the peek of the seven days Jack even became mean to Fiona. I have never seen their relationship breakdown like this. Finally, on the fifth day Jack understood. He stopped yelling at Fiona and started walking to be face to face with her, he tried using sign language, but they were mostly made up signs. Alan, Fiona’s father, started using a few signs and making sure Fiona could see his face and understand him as much as possible. By the sixth night we had got our groove. Fiona was happier, my sign was getting fluid, Jack and Fiona’s relationship was starting to repair. Then on the seventh night I asked Fiona to try the hearing aid and her ear had improved enough to wear her hearing aid again. The difference was so dramatic I felt like she could hear again just like anyone else. Fiona was very happy.

At Storytime even though her right ear was next to me she had to ask “what” several times. I slowed down again, spent time looking at the pictures and asking Fiona questions, this helps. Jack was a good sport, for the most part. I need to do something special with Jack. Just me and him.

Going the seven days without being able to “talk” to Fiona and her not being able to hear was on the top five hardest things I’ve gone through. I’ve always found it difficult raising Fiona with her hearing loss, maybe difficult isn’t the correct word. But I have to repeat everything I say all day long and it does get exhausting. I love the times it’s super quiet and it’s just me and Fiona. It’s the only time there is no strain. We can just be. But those are very rare times. I believe that if we were super fluent in ASL, especially as a family, and if our best friends were things would seem different. But last night as I sat next to Fiona reading bedtime stories, I couldn’t imagine her never hearing my voice again, never hearing me talk about baby sea animals or the game charades. It made me sad to think about Fiona’s world becoming silent.

But her left ear isn’t getting better. Chances are her hearing in her right ear is on shaky grounds, the last hearing test showed a significant drop in both ears. Over the past several months I’ve noticed her hearing getting worse, especially when she’s not wearing her hearing aids, she yells louder than ever before. On our vacation a few weeks ago, she told me she couldn’t hear out of her left ear, and this past week without the right hearing aid that was confirmed. I am scared. Since visiting CSD I have made deaf friends online, I’ve attended an ASL picnic, and I’ve been studying my sign language. I’ve always known, especially since Fiona was around three years old, we needed sign language. But it was always for back up and support. It’s been very useful for us, but we always had the hearing aids and the FM system as well. Fiona has always been able to get enough from her hearing aids to manage well around hearing people. I assumed this would be the way her life would be.

The experience at Jacks preschool this past year was a clue that things weren’t going to be easy in a hearing world. Fiona did not want to go there. She said it was loud all the time. She stuck it out, until this past week. There was no way she could go to that school deaf. No one knows any sign language. It would have been totally unfair.

I’ve been talking and writing about Fiona needing sign language when she goes to elementary for months, maybe years. I always thought she would. I was convinced by my IEP team that she would do fine without sign language support. I wanted to believe them. I signed the papers. I was excited for Fiona. I even took a break from my SEE sign online classes for a session. It’s so much easier to just rely on talking and hearing. I almost felt relieved. But then I noticed Fiona missing things I was saying again, and I had to start using sign language again, so I enrolled in my classes again.

I feel like we are in a middle ground. But it’s not solid ground, it’s shifting. Fiona is losing hearing, I have to keep things going, introduce new ways of communication to my family, prove we need sign language to my school district, try to make the education team understand what is going on. Now cochlear implants have been mentioned. Not by the doctor, but by an itinerant teacher. Also, by Fiona’s speech therapist and her teacher at the Total Communication class. I am neutral on this topic, I’ve always felt if Fiona chose to get CI’s I would support her, but I would never impose them.

Despite all of this I have been working on my paintings for the 50/50 show and taking my Spanish class! I love Spanish, it’s interesting studying ASL and Spanish, and knowing SEE sign and English. I know how to say some things in four different languages. I want to learn Spanish sign language next! Communication is the most important thing, the more people we can communicate with the better!

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Thoughts on Motherhood Through the Eyes of an Artist