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Dirty Laundry Blog by Jennifer Hynes

  • Two Days After my daughters CI surgery

    September 16th, 2020

    I’m having a sad attack! Fiona’s doing ok following the Cochlear Implant surgery. She has no swelling or redness. Today a streak of bright red blood dribbled down her neck. It was after she ran down the hall. She is not complaining of any horrible pain. She has not talked about the CI either, she hasn’t asked any questions. When I asked her if she missed school, she said, “No, not at all, I never want to go back to school”.  This is virtual school, which I spent today worrying how horrible the CI would sound during virtual learning. Fiona already decided she would rather “watch the teachers’ lips” that use her FM or watch the interpreter. I’m going to have a hard time getting back on-line. See here I go again, worry, worry, worry. Now wonder Jack is such a worrier, all I do is worry. But it’s all in my head. So he wouldn’t really know. While I was playing with Jack, I just started crying in the backyard. Jack asked me “what’s that stuff in your eyes?” I told him I was sad. I was sad about the surgery. He said “is it that plant, the one you are allergic to?”. They don’t understand when I’m sad. Because I’m always happy. And sad, at the same exact time. But sometimes the sadness takes over.

    The patient. The ever and forever patients of the world. The sick ones. The system. I feel trapped in a system. I started spinning out of control in my mind about how my “job” has been to make my daughter hear, all these years. Make sure she wears her hearing aids; I’ve already been told she needs to wear her CI all waking hours of the day. I feel like I’ve been pressured by the public-school system to get Fiona a CI. It’s not the “district” or the “county” it’s the system, the whole system. My job is to make sure Fiona can hear, even though she’s deaf. I started spinning out of control today about the CI and how awful the sounds may be for Fiona; she hasn’t worn her left hearing aid for over a year. I caught hell for that. The school did encourage Fiona to wear that aid. But the volume was turned up so loud and Fiona couldn’t understand speech and she had tinnitus, she refused, and I finally said enough is enough.

    I went to acupuncture today. I love acupuncture. I wish my mind didn’t work like this; I wish I could let go. Everyone is super happy about Fiona’s CI. Everyone has said I’ve made the right decision. Why do I feel like I made a mistake? Everyone says Fiona will love her CI and it was the right thing to do, I want to believe them. One-time last year, when I was still opposed to a CI for Fiona a friend said I was keeping my daughter from sound. What I don’t get is how come nobody ever thinks about quality of sound. Just because Fiona can hear with her hearing aid it doesn’t mean it sounds nice. Often it’s distorted sound, it’s frustrating for her. Or it feels very loud to her. The sads, the regrets, the frets.

    We’ll get through this. I will get through this; Fiona and Jack will get through this. Everything will be fine. One thing that would make me feel way better would be a Teacher of the Deaf and a proper deaf education program for Fiona. Then at least when they return to in-person and they go back to 24 students to a class I wouldn’t have to worry about her with a new Cochlear Implant and a noisy environment. That sounds awful to me. There I go again, it’s problem and worry after problem and worry. I need to snap out of this. I’m freaking out and it’s the same thing over and over. I’ve got to get In my studio and make some art. We’re having a Being Human reunion show in November! I’ve got to get busy. Put this worry into some work. I want Fiona to collaborate with me.

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  • Complicit

    September 15th, 2020

    Fiona will miss school today, she is resting. She is sore but not in excruciating pain. She’s definitely questioning the decision to get a Cochlear Implant. Also, I don’t think she fully understands any part of this yet. Even though I’ve gone over it with her several times, the timing, the anatomy, the microchip and magnet. Her throat, she keeps clearing her throat from irritation from the breathing tube. I tried to let Jack take the day off school because he had so much trouble in the morning focusing on school without Fiona. But the teacher said he had to come back to school. He promised me he would log on at 1:00 for writing group.  I asked Fiona if she would come in the classroom at 1:00 too and quietly write about her surgery, or draw about it, or draw anything or read.

    Fiona hates the pink, slimy, antibiotic she needs to take a dose of four times a day. I am the enforcer; I am complicit in the violence against my daughter’s ears. Jack kept asking “why did Fiona want to get a cochlear implant? I want her like before.” I first said and thought “you should have learned and used ASL, I’ve been trying to tell you that” Then I thought that was bad, I’m casting judgement on my six year old child. And my husband. Why didn’t they try harder to learn ASL. I constantly justify my complicity with Fiona loving hearing, loving music, loving her hearing world and wanting to hear. And this is all true. So many people love their cochlear implants. Fiona probably will, right? Or will she hear horrible sounds and get worsened tinnitus and have more auditory fatigue by trying so hard to listen and understand with her hearing devices. Her little ear is so swollen. I can see the large incision behind her ear. I have directions I’m supposed to do specific things, like with alcohol cotton balls and cotton in her ear. She won’t keep the cotton in her ear, and she slept without the cone bandage. It feels like violence.

    I don’t feel Fiona or I are convinced yet of the cochlear implant. Fiona even said “I want it taken out and I’m never going back to the hospital again. It was a terrible experience. I had to wear huge socks and a huge rag.”

    When Fiona looked at me at one point yesterday crying, complaining about what she just went through, I wondered if she was upset with me for letting them cut her and put something in her body. Go through a frightening experience. I feel so sad and awful about this decision. Right now I hate it and feel so so sad.

    When I got in the elevator to go up and get Fiona after the operation I started shaking and crying. I was so scared about the anesthesia on a little girl. Right now at this moment I wish I didn’t do it. I’m so scared and confused now. My husband feels strongly it was the right thing to do. I support him and his opinion, I know there’s no right or wrong. Between getting a cochlear implant and not getting a cochlear implant. I’m just telling you how I feel today. I feel sad and scared and regretful. And complicit. I went with the majority, our whole family’s opinion, experts in the field of deaf education, the audiologist, the surgeon, teacher, her interpreter even suggested a CI for Fiona. I signed all the paperwork and I’ve taken her to every single doctors’ appointment for her ears. I’ve done all the training offered and listened to “the experts”. I’ve created this reality. My heart and chest feel tight.

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  • Surgery waiting Room in Times of Covid

    September 14th, 2020

    I’m sitting in my car in the hospital parking lot. My daughter is in surgery getting a cochlear implant. There was a moment we almost left. Fiona went from being excited to scared and crying. She said “but I’m not going to want to wear my Cochlear Implant today”. I don’t think she understands how many weeks it will take until it works. I just received this text:

    “KP Surgery Update- Patient is in the procedure room and procedure is ready to begin.”

    As I sat on the rolling bed with Fiona before the surgery my mind flashed to all these years in the hospital, from birth until now. From day one Fiona and I have been to the audiologist, the Head, neck, and throat, getting hearing tests every six months, getting a cat scan. Sometimes its talked about as a medicalization of deafness, I think that’s how it’s said. I wonder what that does to a person. How has this course we’ve taken altered Fiona?

    I’m very confused now. I hope I’ve made the right decision. A CI is just a tool and I hope it works for Fiona. There’s a possibility she will reject wearing it just like she did her left hearing aid. There’s also a possibility it will work great and she will love it.

    I ordered a kids book on a little girl who got a CI, actually a few. I was disturbed by the tone in which the books were written. They started off saying how sad the kid was because they couldn’t hear like their friends. I don’t think I will read it to Fiona because it’s almost a form of propaganda. That if you can’t hear you are sad. Fiona does spend a lot of time frusterated because she misses what people say but how can the blame be put on her? Why does she have to be sad because she can’t hear? Shouldn’t people in Fionas life learn ASL and use all the tools of communication with a deaf person to make sure she understands them?

    Fiona wears her hearing aid, she’s getting surgery right now for a Cochlear Implant so she can communicate with friends, family, teachers, ect. But have friends, family, the school done their part to communicate with Fiona?

    This operation has really stirred up all these questions in me. it really is an audist world we live in and my daughter is living in the thick of it.

    Last night while I laid in bed I dreamed of Fiona going to college at Gallaudet. That is my dream for her. I won’t force her but I will encourage her. With her experience she could help make a difference for other kids like herself, born deaf with hearing parents isolated from ASL, mainstreamed and forced to fit into a hearing world by any means necessary.

    We have to think about the conditioning that goes on. On of the lines in the book about the little girl who got a CI was that she did well in school because she was a GOOD listener. This bothers me, Fiona tries SO hard to be a good listener but she can’t understand all the words that are said no matter how hard she listens. And she gets auditory fatigue. It just seems unfair to frame things like that for a deaf child. I don’t like it.

    Don’t worry, I will work hard with Fiona doing the CI recovery listening work. I want it to be a success. I want life to be easier for Fiona in her world and it’s not an ASL world we live in, YET! I will keep trying to get more friends and family and teachers and classmates to learn ASL so the burden is not always on Fiona’s listening skills.

    Its so crazy! I think we have about an hour until the surgery is over. I will let you know how it goes.

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  • A journal: 20 Days during the Pandemic. Getting back in the studio. Daily Writing and Studio Practice September 21st to October 10th 2020.
  • Blog
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  • Random Tips for twin parents

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