Who will interpret?

I helped Rhia pack and then took she and her step-dad to the airport. One of his cousins was getting married, so the whole family was getting together. A big wedding celebration with all the cousins and extended family. Rhia would see her Gran and Gramps and aunts and uncles, first and second cousins and friends of the family. Everyone would be there… except me. I was invited, but between work and grad-school I needed to stay home and study. Plus, who would watch the dog? And really, I am now the “ex-wife.” They are kind people, but do I really need to show up at a family wedding?

This is the first time Rhia has gone on a trip without me and she is not happy! Who will help her communicate? Who knows Sign Language? Who will help her in the bathroom and wash her hair and get her dressed and eat dinner? She wanted details on how EXACTLY Rick would help. “Boys are hard to understand,” she complained. I tried to reassure her, but I too was worried. Since I’m the one who helps her communicate, who will do it if I’m not there?

I was hoping to have her iPad set up with the “Go Talk Now” app ready, but I didn’t have time. Plus, I discovered her iPad doesn’t have enough memory. I need to get her a new iPad, set up the device, learn “Go Talk Now”, program it, and then teach Rhia. I’m sure if I give up sleep I’ll have time to do that. But first I need to work and teach other kids and deal with lesson plans and IEPs for them, then do my homework for my own classes, and study for my math test… but no problem. I’ll master “Go Talk Now” at midnight!

If I don’t have time anymore to help my child, did I make the right decision moving here? If I am no longer available to help her communicate, is moving her closer to her doctors such a great thing? Here’s some great health care, but you won’t understand what’s happening because Mommy’s at work. Sorry kid.

I know it’s good for Rhia dn I to be more autonomous, but mommy-guilt is a big, ugly beast with five heads and poisonous teeth. The minute you think you’ve got it under control, two heads will wip around your shoulder and bite your jugular vein.

After I drove home from the airport, I pulled weeds in my yard and cried. I cried for my daughter who will try to figure out what’s happening surrounded by people who speak a language she doesn’t understand anymore. I cried for the end of my marriage that forced us to move. I cried because life has changed so much and I am exhausted but have to keep going. I cried because I’m rebuilding my daughter’s and my own life. I cried because I still love my ex-husband and his family, who are no longer mine.

I hope they are still Rhia’s.

The Day Rhia Declared She Can’t be a Princess Anymore.

I found Rhia crying in her room.

“Sweetie,” I said, taking her in my arms. “What’s wrong?”

“I can’t be a princess anymore,” she said.

“Of course you’re a princess. Why do you think you’re not?”

“Because I can’t walk anymore and princesses don’t have ataxia! Have you ever seen a princess with ataxia? No!” She buried her face in my chest and cried harder.

I wanted to cry, too. Damnit, why does this have to be so hard for her? Why does she have to keep losing ground a little bit every day? If she has to be blind and deaf, why does she have to notice how all her friends are grown up and living there own lives while she gets weaker and has to stay home? What the hell do I say to her?

Rhia is passionate about Disney, especially the princesses. Cinderella is a personal friend and Rapunzel was at her recent birthday party. She wrote them all a letter and they wrote back. When we go to Disneyland, all she wants to do is talk to the princesses.

“They remember me!” she declares. And a few do. Over the years, we’ve met the same actresses who surprisingly remember Rhia out of the thousands of kids they see each day. There’s just something magical about Rhia, something that draws people to her. Plus, she has a gorgeous wheelchair with flower-print wheel rims. Rhia plays with her princess dolls every day and talks to them as if they are alive; her imaginary friends are her closest friends.

But on this day, those imaginary friends failed her.

“Listen to me,” I said, urging her to look up at me; she has to look at me to see me sign. “You are a princess now and always. Cinderella herself said you are a real princess and you have the certificate to prove it!”

“But that was before…”

“No. Once a princess, always a princess.”

“But I can’t walk any more.”

“So what? Cinderella didn’t say you were a princess because you can walk. She said you’re a princess because you’re kind and smart and funny. You care about people and are a good friend. You are helpful and creative. And you love to sing.”

Rhia had stopped crying and was listening, but still didn’t look convinced. “But I’ve never seen a princess with ataxia.”

“I know baby, and I’m sorry about that. I’m so sorry everything is really hard for you now. You are a princess because you are strong and try hard. All princesses are strong. You are a princess forever!” I hugged her tighter.

She sighed, turned away from me, and picked up her Ariel doll. I kissed her head and left her to think about what I had said. I overheard her ask her doll, “Do you think I’m a princess?”

I prayed somehow that doll said yes.

How deaf is she?

A friend sent me a link to a video called “Are You Deaf Enough, by Jessica Killgren-Fozard, which was posted by Ai-Media. Here is the link to the video:

https://www.facebook.com/aimediaAUS/videos/10155585533079220/

In the video, Ms. Kellgren-Fozard talks about how it feels when people ask her how deaf she is. How much can she hear? Why doesn’t she “sound deaf”? The questions and her response reminded me of how I feel when people ask about my daughter Rhia.

How much can she hear? What does she hear? Can she hear me at all? When did she lose her hearing? She looks like she hears me, are you sure she can’t hear my voice? Why doesn’t she wear hearing aids? Have you considered cochlear implants? 

The answers are: I don’t know. I don’t live in Rhia’s skin and I don’t have her ears. There is no way I can know what she does and doesn’t hear. All I can do is guess, just as the doctors and the audiologist have guessed. We think she hears sound, but it’s garbled, like trying to understand a foreign language under water. She doesn’t hear high pitched sounds. How do I know? Because when the smoke detectors go off she doesn’t even flinch. She looks like she hears you because she used to hear so understands that you are speaking to her and she is clever enough to make excellent guesses about what you are probably saying. But that too is my guess. Maybe she can hear you sometimes, but it fades in and out. She tried hearing aids but hated them. A cochlear requires major surgery and she hates that too, so she learned sign language. Any other questions?

The questions are all about what she can and can’t do. People listen to the answers, nod, attempt to communicate with her for about a minute, then move on. Once they have proven to themselves that Rhia can’t hear, they stop trying to talk to her.

Occasionally I am asked, “How should I talk to her?” What a wonderful question! Instead of wanting to know how Rhia adapts, a person will ask how they can adapt to her. I see people try to communicate with her and include her in an activity. It’s not easy and I don’t blame people when they eventually give up. But the ones who really try to connect with Rhia are rewarded with her bright smile. If they know even a little sign language, Rhia beams and says “They know my language!” All it takes is getting close, making sure she’s looking at you and then signing, “It’s good to see you.”

I know when people ask me about Rhia’s hearing they aren’t trying to be rude or cruel; they really want to understand and learn. And most of the time I don’t mind answering. But if you’re going to ask the hard questions, be sure to follow up with a question about communication. How does Rhia like to be included? What is her favorite thing to do? Can you help me sign a question? Does Rhia understand what is happening? How can I help her understand? Would Rhia like a cookie? How do I sign “cookie”?

The more you focus on who Rhia is and learn how to communicate with her, the more you will discover she is a vibrant, funny, kind hearted young woman who loves to sing and go for walks on sunny days. She’s also deaf.