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I Have Meniere’s Disease?

I have so much that I have wanted to blog about, but life has so rudely interrupted my attempts. Vertigo has no manners I tell you. 

The first time I ever experienced vertigo was about 10 years ago. I was hanging out at my friend’s pool and suddenly I couldn’t even walk straight. I was so dizzy I had to be carried to the car and it was there that the nausea turned into vomiting. No fun at all. I could tell that the source of the imbalance was coming from my ear which had been ringing and what I could only describe as a stuffy, cloudy feeling. It eventually got bad enough that I drug my uninsured self to an ear doctor. I pretty much wasted $400 for them to do some tests and have a Doctor say “Yep, you don’t hear as well on the left side. As far as the ringing goes some people like to use music as a way to distract from the irritation that intensifies in silence.”

 My ear issues have come and gone since then. I mostly just deal with it, but over the past couple years it seems to have gotten worse. I have been embarrassed to talk about it because I don’t like to seem like a hypochondriac. I feel like it could look like a desperate attempt to compete with my daughter’s deafness. The truth is though, I know I don’t hear well at all from the left side. I realized just how bad when I had ear buds in and I swore the left side wasn’t working… until I put it in my right ear. After doing some online research I diagnosed myself with Tinnitus (this was about two months ago). Tinnitus basically just means ringing in the ears.

On Friday I had another rare episode of vertigo where it felt like my eyes were scanning the room diagonally and rapidly, but it was all involuntary. Up down. Up down. Up down. The room was spinning except I couldn’t see behind me so to me spinning isn’t even the right word. I started freaking out a little bit and told Z to get my phone. I hunched forward and when it ceased I said “that was trippy” which is a word I never use. Then I was able to get to a plastic bag just in time to loose my lunch (via the upchuck). This happened again on Monday (in a Kroger parking lot) and Tuesday. Each episode was usually followed by covering my face with a  wet rag and always falling asleep.

After a little more online research about tinnitus and vertigo I found one article after another that had my symptoms written out with complete accuracy. 

  • Dizziness or vertigo, often with nausea and vomiting
  • Ringing or roaring in the ear (tinnitus)
  • Fluctuating hearing loss
  • A feeling of fullness or pressure in the ear

and there was a name for it 

Ménière’s disease

The Mayo Clinic says a diagnosis of Meniere’s disease requires:
  • Two spontaneous episodes of vertigo, each lasting 20 minutes or longer
  • Hearing loss verified by a hearing test on at least one occasion
  • Tinnitus or aural fullness
  • Exclusion of other known causes of these sensory problems

That’s it. That’s me exactly. On top of that it can first appear in your early twenties (like for me), the vertigo is followed by episodes of fatigue (check), and most enlightening to me was how the hearing loss fluctuates in the early stages, but eventually becomes permanent (so I am not crazy). Some of the things I read were kind of scary like no cure and no known cause. But in some cases it is just considered “mildly irritating”, which is how I feel most of the time (ha ha). I just laid out all of the worst aspects of it over the course 10 years. This probably makes it sound terrifying, but most of the time it’s just a mildly irritating frustration that I have learned to deal with. 

So that is why my blog has been a little quiet lately. Well, that is one of probably 50 reasons why. There is a lot happening right now. But as far as my newly diagnosed disease, I am first of all just glad to have a name for it and an idea of what is going on. And even though medicine may not be able to cure it I know the great physician, the ultimate healer, my savior Jesus Christ and I have peace in that.  

By |2023-06-12T06:30:19+00:00May 24, 2013|Our Hearing Loss Journey, Uncategorized|3 Comments
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Speech Therapy Behind The Scenes

I don’t mean to sound like a broken record or, to be more current, a song stuck on repeat, but learning to talk with a cochlear implant is a lot of hard work! SJ rivals A-List celebrities with the size of the entourage she has working with her. I even have to go special meetings, classes, and conferences to learn right along with her. 

She goes to school 5 days a week and has private therapy daily. She has made some significant strides since she was remapped a month ago. She turns to her name consistently. I used to call for her as a listening test just to see if “it worked”, now I call for her in a normal and practical way expecting that she will respond to my voice. She has even heard me from another room. Some sounds that are frequently heard around our house are the baby crying, Z’s video games, a timer beeping, and the cell phone ringing. I shared the video I have of her hearing the first two and since then she has also responded to the timer and the phone. This is a breakthrough that I had previously only dreamed about! 

There are so many steps to hearing that we take for granted because for most of us it is just like breathing or drinking. I bet you are a pro in the area of auditory processing. If you go outside and hear birds chirping up in the trees, you are able to accomplish sound detection, discrimination, and localization without even trying. This process is one that we are in the middle of working on with SJ along with starting some vocalization. So far SJ has said “Uh-Oh”, “up”, “more”, and some animal noises. She has made several attempts at other words when prompted too (prompting is when you say the word for her so that she can repeat it). One thing I’ve learned about since she started school that is worth mentioning is called”approximation”. It’s when the word sounds approximately like whatever she is trying to say. When SJ tries to mimic a word, or produce a sound, or a melody, it is usually completely unrecognizable, but for where she is at (5 months old hearing age) she is doing great. We are not working on articulation. We are not working on sentences or manners yet. What we are working on right now is getting her to be able to recognize and produce basic sounds and every effort on her part is worthy of celebration. 
In this video you will see SJ putting together a Mr. Potato Head. Her therapist is prompting her to say the name of each part before giving it to her. She doesn’t always cooperate (just to be perfectly honest), but this was a good day for this particular activity. 

Now that is what a I call a pretty little girl with a bright future! 
By |2023-06-12T06:33:16+00:00May 3, 2013|Speech Therapy, Uncategorized|3 Comments
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All About The Cochlear Implant (CI)

“I have a question about the implants … does the part that is on the outside of her head stay on all the time (even at night and during bath)? I was just wondering how bath time works and bedtime (can she only sleep on her back? is she able to comfortably sleep on her side, is the outside piece water proof)?”
A couple weeks ago my friend left this question as a comment and I wanted to not only answer it, but to give everyone the inside scoop about how a cochlear implant works and reveal some of the mystery behind the bionic ear without getting too technical. 
First of all during surgery the Doctors implanted the CI’s internal parts into SJ’s skull. Amazingly her surgeon made the incision behind the ear and then pulled the skin back to drill a well into the bone and embed the device just under the skin. 
The image above shows the internal device.  You can feel a bump on both sides of SJ’s head. It’s pretty obvious where it is, but not something you would notice without looking for it. You can see a scar and the bump in this photo, but this was right after surgery so her head had been recently shaved and the cut is fresh. She was wearing her processor on her ponytail at the time to allow her ear to heal.

There are many parts to the cochlear implant and they all have specific names, but lets just go with layman terms for now.The external device looks like a giant hearing aid with a wire, that sends the information from the microphone, then to the magnet, then to the internal parts. When the magnet comes off the sound goes off too. 
 

The INTERNAL part is completely water proof, “sports proof”, and from what I understand feels like it’s not even there. However, having a magnet means she can’t go through metal detectors or have MRI scans.  
The EXTERNAL part is considered water proof, but there are some stipulations. She can wear it in the bath, but we take it off to wash her hair. She can wear it at a water park or in the rain. She can not wear it swimming deep under water or submersed for more than 30 minutes. Some of the other CI parents I have talked to actually feel more comfortable taking it off for swimming altogether or having their child wear a special swim cap.  

 SJ is not supposed to sleep with her processors on. I have heard of some adults that do, but it is recommended that the skin gets a chance to “breath” and that makes sense. It’s also a good time to recharge the batteries and put let the device air out in a drying container. 

To answer Tracey’s question the part on the outside of her head should be on every waking hour. I am not sure what we will do when she starts swimming, but I guess we’ll cross that bridge when we get to it. When we went sledding we took it off because we can’t afford to loose a $50,000 piece of equipment in acres of snow and I’ve heard the same rules apply in the ball pit!

It’s still a little strange to have her hearing be controlled by remote and powered by batteries. It’s been 4 months since the first surgery and I feel like I know just enough to get by. Someday SJ will be the owner of her “ears”, but for now the whole family is responsible for them. We all, including Z, are learning together and working together as a team. Eventual it will be 2nd nature. 

By |2023-06-12T06:23:30+00:00March 3, 2013|Cochlear Implants, Uncategorized|2 Comments
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How to Prepare for Cochlear Implant Surgery

SJ just made it through her 2nd Cochlear Implant surgery. The Doctors said it couldn’t have gone any better and all is well. I am actually at the hospital right now and since I am just waiting for them to finish up, I thought this would be a good time to share my CI surgery tips. I have always wanted to share these suggestions on the blog in hopes that it could be helpful insight for parents of children undergoing the CI surgery or a similar procedure.

1. Preregister for the surgery ahead of time

2. Make sure your child is bathed in preparation for surgery. It will be at least 48 before they can bathe again and even longer for washing hair.

3. Allow your child to stay up late and eat late since they will not be able to eat the next day and will be sleeping most of the day as well. Try high protein, high fiber foods to help them feel full longer. Make sure all food is hidden and definitely out of reach in the morning so there aren’t any sneaky snack mishaps. You may also want to eat before your child wakes up so that you are energized without having to eat in front of them.

4. Arrange someone to help out with siblings so that they do not get too bored or interrupt during critical moments at the hospital.

5. Have directions and itinerary for anyone you plan on coming to the hospital.

6. Bring snacks and reading material to have with you while waiting. You may know ahead of time that you are staying overnight, but even if you are told it’s outpatient that could change, so plan accordingly.

  

7. Dress your child comfortably and bring a couple changes of clothes. Choose shirts or pajamas that button up so that you don’t have to pull anything on over the”turban” and sensitive incision area.


SJ after getting the medicine to sedate her. She was in a happy place.

8. Bring small books or toys for child to have during waiting time which could end up being a while. They can also make great distractions while they check blood pressure, heat rate etc. 
(The doll was for her, the snack was for me)

9. After surgery have the nurses bandage up a doll or stuffed animal. You might also want to bring a familiar blanket or pillow case and a small photo album of loved ones to help comfort your little one.

 

10. During the time that the bandage stays on have plenty of hands on activities to change up frequently to keep your child from trying to pick at the headdress.

I have heard this referred to as a “sunshine basket” which might include stickers, puzzles, bubbles, you name it. They can be inexpensive and simple. The trick is to spread it out a little at a time. For example don’t give them a box of fun things, just give them one glow stick. Instead of a giant coloring book just give them one page to color, or cut out a couple stickers to peel off instead of the whole sheet. Otherwise it will all become boring and ineffective far too soon.

Obviously you know your child as an individual and your Doctor and surgical facility will be the best resource for how to prepare. These are just a few of things that helped me and SJ through both surgeries and I wanted to get it all documented while it is fresh on my mind.

On another note SJ should be coming out of the operating room any minute now and we’ll be staying at the hospital over night. I will be sure to update everyone on her progress, but so far everything is great. Thank you for your prayers and support!

By |2023-06-12T06:30:34+00:00February 14, 2013|Cochlear Implants, Uncategorized|7 Comments
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Our Decision To Implant

 Little did I know that by having a deaf daughter I would be thrown into a controversial cultural land mine. I love watching the show Switched at Birth on ABC Family because I get my ASL fix. In the latest episode the character Bay starts going to a Deaf school. In this scene she is with her deaf friend so it looks like everything is hunky dory, but she ends up being an outcast as a hearing person in deaf school.
  
The next show focuses even more on her being bullied. The show does a great job of portraying the ongoing struggle between the deaf and hearing world. The premise of the show however is about how we can all come together and be a family embracing the differences. 
I’ve actually gotten emails from some people in the deaf community that told me I would be making the wrong decision to give SJ a cochlear implant. Days after she was implanted a deaf friend saw my status updates about her surgery on Facebook and said

 “I hope she will be happy with her CI… I hope that is what she wants instead of a decision you are forcing on her… I will be there for her if she needs me..” 

Yeah, my two year old daughter who cannot communicate is recovering from a serious surgery and I get this message. That was almost 3 months ago and here we are ready to give her a second one. I would like to use my blog as a platform to address the reason why. There are a lot of reasons and I have shared them on this blog before, but I’d like to share with you a letter that keeps it all in perspective for me.

In April we first found out for the first time that there was even a remote possibility that SJ might be deaf. That month we took a trip to Texas because I was photographing a wedding. It just so happens that while I was visiting my inlaw’s church there was a women signing during worship. God has a way with “just so happens”  doesn’t he? I spoke with this women who is fluent in ASL and teaches sign language full time. We chatted and exchanged contact info. After reading my blog and keeping up with me on Facebook she sent me this message. I asked her for permission to share her words because it has been a lifeline for me throughout the ups and downs and I think there may be other parents in my situation that would benefit from her wisdom as well. This is what she sent (emphasis added)- 

I just read the update on your blog and I want to tell you I’m so proud of how well you are adjusting to all of this. I know it’s incredibly overwhelming – all the tests, information, opinions, and decisions can seem like a whirlwind when you’re trying to make the best decisions and time is of the essence. 
I just want to encourage you in trusting yourself and God to know what to do. 
He is leading you to the people you need to help you through this transition. You have a perfect, beautiful, amazing little girl and God has incredible plans for her! I have been & will continue to pray for you & your family. You are doing everything right and Sedona is so blessed to have you as a mom! It sounds like she is a perfect candidate for the CI and is still so young where the success rate is amazing. 
Continue to teach her sign, help her learn to speak & read lips, teach her in whatever method is best for her and for your family, but above all celebrate her as an amazing child unique and special as I know you do everyday. Don’t listen to the extremists who might try to tell you there is one right way to raise a happy & successful deaf child.
She is going to flourish and do great things. Give her every opportunity you can, in whatever way that seems right for her. Allow her to embrace her deafness as part of who she is and not see it as a defect that needs to be “cured”. Even people who gain perfect speech and “hearing” with a cochlear implant are still deaf. I know you all have a big journey ahead with lots of changes and adapting to do but Sedona is going to do awesome! I know a lot of deaf people, oral, signing, intelligible speech, no speech, ASL users, and signed exact English users, young, old and inbetween and they are all happy and well adjusted people. Deafness is a part of her but it doesn’t define who she is.
Thanks for posting about your personal experiences. You have a great support system and a lot of prayer on your side.
As the big steps and challenges come, don’t let them weigh you down. Celebrate the simple things and trust God to get you through the hurdles.
Lots of prayers! Keep us posted!
By |2023-06-12T06:30:50+00:00January 18, 2013|Cochlear Implants, Our Hearing Loss Journey, Uncategorized|5 Comments
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What To Expect When You Expect Hearing

We are about 10 days away from SJ having her cochlear implant activated. Right now SJ has the internal device, but that doesn’t mean anything without the sound processor, which is typically given 3 weeks after implantation. When scheduling the activation the Doctor gave me several dates to choose from. I had to pause for a moment to let it all sink in. I am selecting the day that my daughter will hear. They actually call it her hearing birthday. She will start hearing from that day forward. I chose the soonest date possible of course!

Am I excited? Yes, absolutely, but to be honest I’m guarded.  This isn’t the first time I have expected SJ to hear. The first time was after the initial sound booth test. I felt confident that she was not deaf. We left the ENT’s office doing our own hearing evaluations. We would ring bells, shout her name, look for reactions as airplanes flew overhead and she never responded. One time I went in the bedroom where Z and SJ were still asleep and I banged some pans together loudly. Neither one of them woke up so that experiment was kind of a wash. Then we got the hearing aids and when they turned them on they said it would be gradual because they wanted her to be able to adjust to hearing. Sometimes I thought I saw her making progress with the hearing aids, but still nothing significant.

I feel like I have spent the past 8 months trying to catch flecks of dust floating in the sunlight. I want to reach for something and really be able to grab onto it. I want to know that she hears and I am hoping it will not take extensive detective work to be able to recognize it. J and I have been given a lot of information from her team preparing us for the realistic and even then there has been some confusion about what to expect when they turn the implant on. In order to alleviate some of this confusion for us and everyone else I emailed her Doctor. This is part of what she said in response.

The first day is different for everyone.  When I turn on the implant,
she may hear beeps, bells, or whistles at first.  Or she may hear
voices that sound more like Charlie Brown’s teacher or mushy speech,
or it may sound close to normal. I would suspect that our voices will sound
more like Charlie Brown’s teacher for the first week or so. Then,
after she is wearing it consistently, voices and speech will sound
more normal. 

She will be able to hear soft sounds, voices, airplanes-all on
the first day. No sound will be too loud, because I will control that
volume on the implant.  Her “hearing” with the implant will be normal
or close to normal when the CI is on.  She may not be able to
understand what you are saying right off with the implant although she
is technically hearing you, but the understanding part will follow
shortly.

Right when I turn the implant on, she may have an awesome reaction,
like pointing to her ear, laughing, etc. or she may have a not so
great reaction, like crying.  Like I said before, every child reacts a
different way.  Basically, expect any reaction as a sign that she is
hearing!

So that is what you can expect from SJ on her hearing birthday, and you can expect me to be a nervous wreck. I would say I don’t want to get my hopes up, but to quote one of my favorite lines from Monk “That’s what hopes are for.” 

By |2023-06-12T06:19:26+00:00November 19, 2012|Hearing Aids, Uncategorized|3 Comments
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The Surgery

As I type “The Surgery”I hope that I never have to use a title like that ever again and then I remember that this is the first of two. We want (and it is recommended by her medical team and deaf teachers) for SJ to have bilateral cochlear implants, but right now I can’t even think about it. The nurses at the hospital asked about her getting a second CI and I told them “it’s kind of like giving birth, at first you think you don’t ever want to do that again, but then you forget.” as I say it I am holding my 3rd child who is 5 weeks old in my arms proving my point. I am learning that this part of our journey has to be looked at one day at a time. 

Day 1
From the morning of the surgery I gave play by play updates on Facebook and Instagram. This is how the day unfolded via social network…

8:35 am- I got this Brave doll to give to my brave little girl after surgery. The M&M snack mix is for the nervous mama 

11:13 am- On our way to the hospital. She’s just relaxed as can be checkin’ out the Toy catalogue.

3:30- They have given her the happy juice and she is about to go in.

3:58 pm- They are behind schedule, but SJ is in the operating room. Thank you for your prayers. I will continue to give updates.

5:59 pm- They are inserting the device now! For those that were wondering the entire surgical procedure takes around 4 hours. So probably an hour and a half left.

7:53 pm- Thank you for all of your prayers. SJ is finishing up right now. We haven’t seen her yet, but the audiologist and ENT had a very positive report. She won’t have the device officially turned on until after she heals, but they do check it once before they sew her back up and her brain responded to the sound when they checked it. They actually said “Every cell responded beautifully” In other words, the surgery was a success! Praise the Lord! We can’t wait to see our baby girl.

9:22 pm- It’s been an emotional roller coaster that I’m sure will continue for a while. 

AND this is what happened on Day 2…

J, baby E, and I stayed over night with SJ. Z was at home with both of his grandparents. It was a rough night including some vomiting, a nose bleed, lots of crying along with SJ signing “hurt”, and trying to rip off all of her hospital bracelets, monitors, IVs etc. The hospital staff wrapped up her Brave doll so she has a matching turban. We left the hospital at 10:00 am.

 The hardest part has been keeping her from ripping off her head bandage. It really bothers her, but she will become distracted for long periods and is almost used to it now. My best friend sent a package with all kinds of goodies for the whole family and it’s really come in handy. Things like this puzzle are what help keep that girl’s hands busy and away from her head wrap!

Day 3 (today)- SJ seems to be improving every minute. My strategy is spoil her to pieces. She cannot run around, climb, jump, get wet, or pull at her bandage, other than that anything goes. It seems like a fair enough deal to me.

Tomorrow we get to take off the bandage, but she still has to take it easy for another week. Then in 2 weeks she has a follow up with the surgeon, and three weeks until the implant gets turned on! Oh yeah, and I guess Thanksgiving is somewhere in there. Oy!

By |2023-06-12T06:26:59+00:00November 8, 2012|Cochlear Implants, Uncategorized|3 Comments
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SJ’s Cochlear Implant

When J and I first heard about the cochlear implant we thought it was a decision that would best be left for SJ to decide when she was an adult. However, since then we have learned a lot more about the device and the procedure. It turns out that by leaving the decision to her we are making the decision for her because her brain would never be able to acquire or “decode” language later in life anywhere near as well as she can right now during this brief window of opportunity. We’ve done a lot of research and been in touch with many different people; people from the deaf communities, parents of children with CIs, adults with CIs,  Doctors, and teachers of the deaf. We’ve watched DVD’s, read books and articles and most importantly we’ve prayed over this decision.

 We started with her hearing aids, but her hearing loss is just too profound to really benefit from them. After this trial period we had a 2nd ABR, an MRI, and a CAT scan which confirmed that she would be the perfect candid for the surgery. After that we went to see a Doctor from one of the top Cochlear implant centers in the world. SJ’s medical records were reviewed by a panel of experts at that hospital. Everyone that has worked with SJ has suggested the cochlear implant and they all seem to have very high expectations of how she would benefit from a CI.  By this time we finally felt confident in the path that we were supposed to take, the surgeon we were going to use, and which of the 3 CI manufacturers we  she would be using.

The surgery will take about 3 1/2 hours. They will be performing the surgery on her right side. This means she will loose nearly all that is left of her natural hearing from her right ear, but the sounds she will gain through the implant will be a dramatic improvement so it’s a good trade. The type of device she will receive is called Cochlear Americas Nucleus 5.

To give a brief overview of what the implant is like, it starts with the internal device which will do the work of the damaged cochlea to provide sound signals to the brain. Then there is the external device called the processor. Picture a big hearing aid (or bluetooth) which hangs over the ear, but it doesn’t go into her ear it is connected to a transmitter that will magnetically stick to her head. I know it sounds very sci-fi, but this “bionic ear” technology is being called the biggest medical advancement of the 21st century and it will allow my daughter to hear!

So as you can see it’s been a major process and a lot of life changing decisions, but we feel confident in the choice we’ve made and have a peace going into this surgery. SJ will be operated on this Monday and will come home the next day. She should bounce back within days after surgery and will have the device activated in about 3 weeks after it has had time to heal. We will keep everyone updated.

By |2023-06-12T06:23:43+00:00October 30, 2012|Cochlear Implants, Uncategorized|2 Comments
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SJ’s Signs Part 2

We leave for Texas in a couple weeks and it will be our first visit back to our home state since SJ’s diagnosis. Even though she doesn’t sign a ton, I want our Texas family and friends to be able to know what she is saying when she does. I knew I needed to make another signing video of the signs that she uses. I wasn’t planning on doing it when I was all hot, sweaty, and had not showered or done my make up, but when SJ hopped up on my lap while I was at the computer it seemed like as good a time as any. In the video it might seem like I am apprehensive about traveling to Texas or the wedding. This is not the case, it was just that I was trying to wing it and it was my ASL vocabulary that I was apprehensive about sooo… anyway enough disclaimers. Here is the second installment of SJ’s signs. 

She understands many other signs and she will mimic a lot, but those are some of the main ones that she uses on her own along with; no, milk, more, please, potty, eat, help, thank you, all done, and hurt, which are all included on the first video  except for milk and hurt. 
Milk is pretty easy, just squeeze your fist to represent milking a cow. 
Hurt is just like pointing 2 fingers together wherever the pain is.
I heard that some people had a hard time viewing the first video so I have posted them on youtube in case that helps
http://www.youtube.com/watch?v=3ze_5HhJMss&feature=youtu.be
http://www.youtube.com/watch?v=EyeXMkgRSpw
Let me know if you have any questions. Thanks! 
By |2023-06-12T06:31:12+00:00July 25, 2012|ASL, Uncategorized|4 Comments
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Processing Deafness

Just to let everyone know right up front, we are doing just fine. SJ is great, we are still learning to sign and speech therapy is underway. I just wanted to be transparent about the reality of all the complicated aspects of this process.

The moment I knew there was potential hearing loss for SJ I started researching. I’ve tried to learn all about the deaf community through videos, websites, reading material, and talking to anyone I could find that was involved in the world of hearing loss. I learned that they have their own culture, defined as a group of people that share a language, values, rules for behavior, and traditions. I read a lot of fascinating and encouraging things that made me want to delve deeper into this culture, but some of the articles I read made me feel like, as a hearing person, I was an unwanted trespasser. I didn’t understand why some deaf communities seemed so exclusive and defensive. Then I learned about the oppression that started taking place in the 1800’s when deaf people were forced to learn ways of oral communication and they had to fight to preserve their language, which was almost completely wiped away by the idea that deafness was a burden that needed to be removed from society. At this time it was also believed that no deaf person should intermarry in order to try to eradicate the problem. I also learned how up until recently, including in my mothers generation, many deaf people have been misdiagnosed as mentally challenged and therefor isolated from the opportunity to communicate or become social. It’s no wonder some deaf people feel like they have to fight against the hearing world to preserve their identity.

When I was told that my daughter had severe to profound hearing loss, I didn’t know where that placed her on the hearing loss spectrum. I tried to look up information, but my results were inconclusive therefor I announced to the world that SJ was hard of hearing and not deaf. Since then her team of experts, doctors, therapists etc. have said otherwise. SJ is deaf and I just didn’t know what to call it.

I read one article that said;
 In hearing culture, the terms used to describe deaf people have to do with their hearing loss. The term “hard of hearing” is better than “deaf.” Hard of Hearing people are generally regarded as being easier to communicate with and fit in better with hearing people. In Deaf culture, though, the terms are quite the opposite. There is one label for people who are part of Deaf culture…Deaf. 

Not to be defensive, but I did not use the term hard of hearing because I thought it was better. I am not ashamed to have a deaf daughter, misinformed maybe, but the only reason I didn’t call SJ deaf is because no one told me! I was afraid to offend the deaf community. I feared that by labeling SJ deaf we could potentially get kicked out of a party that we were never actually invited to. When you learn about deaf culture you learn about deaf pride, which is a beautiful thing, but it can be intimidating when it’s new to you. 

As a mother of a deaf two year old I am responsible for the decisions in her life at this time. The more I have learned about this whole hearing loss process the more I feel like I am in-between two worlds. I am trying VERY hard to embrace ASL, but it never fails that I am breaking rules about sign names, and grammar, and the idea that maybe the cochlear implant is not from the devil. 

The ironic thing is, I’ve always wanted to adopt. For me personally my heart has ached for the many minority babies in America that need a home. I have always felt like we would some day be a biracial family, I have even referenced this in previous blog posts. I never imagined though that I would have a biological child that was a minority and who could identify with a culture and a history completely different than my own. It’s one thing to adopt a child of another ethnicity, but wouldn’t it be strange if you a birthed a baby and the Doctor said “It’s a boy… and he’s Hungarian! Now here is a book of rules on Hungarian culture and this is how you need to raise him.” That’s kind of what it feels like. Different, but I don’t know what else to compare it to.

Now I could write another 5 paragraphs of disclaimers because I worry that all of this could be taken the wrong way, but instead let me just end with the true nature of my heart. Community and culture are vital to our makeup, but so is individuality. God has given me the gift of motherhood, and as long as he continues to bless me with children whether they be biological, adopted, black, white, deaf, or Hungarian my husband and I will joyful take up the challenge to raise them to be men and women of honor and integrity. There are good days and bad days, but this truth is deeply rooted in my heart.

By |2023-06-12T06:31:28+00:00July 17, 2012|Hearing Loss, Our Hearing Loss Journey, Uncategorized|3 Comments
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