"Where Are Her Hearing Aids?" - Our Hearing Loss Journey Part 4: The Final? Chapter

It has been almost a year since our youngest daughter, Blakeley, was aided with 2 Oticon hearing aids in bright pink with clear gold-glittered ear molds.  She was diagnosed in June of 2018 and aided August 7 that same year.  You can read about our experience through the first 6 months of her diagnosis in 3 parts: 1, 2, 3.  Perhaps you have noticed online or in person that Blakeley is no longer wearing her hearing aids.  She hasn't worn them since Christmas.  We have been going through a lot since then, and I have been avoiding explaining all of this to people, because so much is still unknown.  But I know there are people who have questions; sometimes they ask in person, which is fine!  I love when people feel comfortable enough to talk about anything.  And sometimes I can just tell from the stares and looking at the side of her head, people are wondering... where are her hearing aids?

The most simple answer is this:  they are in a drawer at the house.

The explanation and more complicated answer can be read below:

A few days before Christmas 2018, we went to meet Blakeley's new audiologist.  Before we left town for the appointment, we mailed off the last of the Christmas letters I had written explaining everything we had been through during the past year with Blakeley's hearing loss.  I also emailed my cousin back to thank her, because I had ordered custom t-shirts from her for each of our immediate family members with their names printed in ASL (American Sign Language).  She had also mailed us a free ornament with our last name in ASL, and it was the sweetest thing ever!

Our Christmas card photo - our first professional family photo with Blakeley in her hearing aids.

M-U-R-R-A-Y 

On the way to the appointment, I was still feeling quite sad about having to go to a new audiologist. Back in October we had been told that the first audiology clinic we had been taking her to was no longer providing pediatric care.  I had been devastated and scared.  The pediatric audiologist that first took care of Blakeley, really first took care of me.  Blakeley never cared that she had hearing loss, because she never knew any differently.  I, on the other hand, had felt totally lost and bereaved.  She had rescued me from the overwhelming fear and sorrow I had been going through when Blakeley was first diagnosed with permanent hearing loss.  She had given us resources, taught us how all the testing works, answered all of our questions, and put Blakeley's hearing aids on her for the first time (again, all that is told in parts 1 and 2).

Of course, Kyle reminded me that I get a little too attached to doctors sometimes, like when I wanted to invite our midwife to Thanksgiving the year we had our first child, and Kyle had to remind me that she had 4 kids and a family of her own to have holidays with! Ha!

So thankfully we had already been seeing a speech therapist for Blakeley at Hearts for Hearing, where the new audiologist also worked.  He seemed very nice when we met the audiologist - young, but nice.  I know that sounds like an old person talking, but I am 35 years old... I am not that old, and when it comes to medical care for my child, I get a little nervous when the person looks younger than I am.

I was also concerned because for about a week Blakeley had kept taking her hearing aids off constantly.  She had not done that since the first week she had them.  She had been wearing them most of the time for 5 months and was very used to them; didn't even notice they were there anymore... except all of a sudden that week she took them off after only a few minutes of wearing them.  I would put them back on.  She would take them off.  Sometimes, she would only take the ear molds out but leave the aids on (they were affixed to a headband she was wearing).  I started to wonder if she had an ear infection, and maybe the molds hurt to wear them.  With a barely 1-year-old, there is really no way to know anything going on inside their bodies.  But no matter how many times I would put them on her, she would take them off.

I explained my concerns to the audiologist before they went into the booth.  He took a look into both her ears, and then they set up for the booth test.  My husband went into the booth with Blakeley this time - a first.  We had been going to so many appointments that there was no way he could be off work for all of them, so this was the first time he had been to a hearing booth test day.  He held her on his lap, the speech therapist kept her occupied and distracted enough so she wouldn't be "looking" for the sounds that the audiologist sends into her headphones.  They go through the whole test, the audiologist on the outside of the booth recording Blakeley's responses and/or lack of responses to sounds.  Then we go into his office and have a seat...

 I could tell from the look on his face that he had something huge to tell us.  I was worried that perhaps her tubes had come out, causing an ear infection and difficulty hearing even with her HAs (hearing aids) on because of fluid build-up.

He started, "I wanted to start by saying that I wish I had videoed what just happened in that booth, because she does exactly what we hope kids will do in the booth.  She is so young but modeled exactly how a booth test should go."

I was confused.  I couldn't tell if he was saying that her behavior was model behavior or if... her hearing was model hearing???  What?

He continued, "If you look at this," showing us the audiogram from the booth test, "you'll see that here is where she was before on her first test, and here is where she is hearing now."  Every current hearing result was within NORMAL range of hearing, except one was left blank.  The Dr. said, "Her hearing is all within normal range except in the 500 Hz, we can't get her to respond.  We do not know if it is because it is a low sound that just isn't interesting to listen to, or if she doesn't really hear it.  She is too young to tell us or to ask her.  It is common, however, for kids with tubes in their ears to not hear this pitch.  It is usually only temporary due to the tubes.  So, looking at this test and considering her tubes are still in place, I feel comfortable saying that Blakeley has normal hearing."

SILENCE... my mind was racing while the room grew so incredibly quiet.

My first reaction was that I should have been the person holding her in the booth (which is ridiculous, because the parent literally does nothing but provide a lap to sit on during the test), but I had been in there for all the previous tests... Then my next reaction was to wonder how good of a doctor this audiologist was - my first time to bring Blakeley to him, and she hears just fine all of a sudden?!  Yeah, right, dude...

But then I started to think, 'Well, if that is true, what have we been doing for the past 6-7 months?!  They said permanent hearing cannot be cured or get better.  They said she had reverse-slope mild to moderate hearing loss.  She has had two booth tests since her first test - they have all shown the same thing... how could this be?!  Was the first audiologist who gave her that first test drunk?!  How could the second audiologist who had 20+ years of experience be wrong too?!  Why should I take the word of a young, brand new audiologist over two others who had more experience and had the same results?!'

So I started to cry.  I was mad.  I was confused.  I was heartbroken.  I was devastated.

I had been wronged.  Lied to.  Betrayed... or I was now being misled?

I started saying all my thoughts,
"So if she can't get better, did she ever have hearing loss?"
"Was somebody drinking over there the day of her first test?"
"How reliable is this new test?  Can we do another one?"

He said that misdiagnosis happens "often enough that we expanded our office from OKC to Tulsa.  We kept having people travel to OKC and go through all this testing to find that it was all an inaccurate first test."

This answer made me FURIOUS!  How many times had I driven to Tulsa for ENT, Audiology, speech therapy, and hearing aid appointments?!  How many books and articles had I read?!  How many hours had I spent crying, feeling alone in the world, taking ASL class?!  How many hours of work had I missed?  How much money had we spent?  Our parents split the cost of Blakeley's hearing aids - how would I pay them back?!

This answer made me sad.  How many friendships had been formed through our admittance into the deaf community?  How much had my identity changed - the way I saw myself as a mother with a child with special needs?  Who were we now?  Where did we belong now?

I think I was more sad the day we were told her hearing may be normal than I was the day they first  told us she was hard-of-hearing.  That may not make sense, but Kyle said he felt the same way.  We had spent over half of a year rearranging, not just our lives, but our thinking... and now this doctor was saying it was all for nothing.

So we scheduled another test for the week after New Year's.  And I started to panic - I had just mailed 80 letters to so many friends and family explaining Blakeley's hearing loss.  I had just spent all this money on custom t-shirts that said things like "Mamoo", "Pawpaw", "Grandma", "Grandpa", "Mama", "Daddy"... all in ASL!

The audiologist said that between then and the next test, we should leave her hearing aids off.  He said the reason she was pulling them off was because they made things sound funny.  Her tubes were still in place, and there was no infection or inflammation in her ears.  Her hearing aids were programmed to magnify sounds in certain pitches, and he said that she has realized she likes the way things sound better without them.

I said, "We are about to leave for Christmas for 3 days to attend 5 different gatherings with family plus church... what are we supposed to tell people when they ask?"

He said, "Tell them whatever you want, but perhaps you could honestly say that she keeps taking them off and the doctor said it was okay to take a break for two weeks until her next test?"

Her first day without wearing her hearing aids in 5 months; Christmas at Uncle Kevin and Aunt Heather's

Christmas church service, not aided

 So that was our plan as we left.  I still wasn't sure I believed the doctor.  Over the next two weeks, I acted very breezily about the fact Blakeley wasn't wearing her HAs when people asked.  I acted like nothing was going on... when I was actually torturing myself mentally, going crazy asking myself 'Did she ever really not hear, or did we just treat her like she couldn't hear?!' 'How do we explain to our parents that they spent all that money for no reason?!' 'What do we tell people in the Deaf community - will they resent us?' 'Should I send another post-Christmas letter explaining everything we sorta know now?!' 'Did she ever really act like she couldn't hear us?' 'How do I share this information online without pointing blame at her previous audiologist, who I still feel like is my savior in some way... how could she also be someone who missed this huge thing?!'

It was grueling.  It was mentally exhausting.  I cried often in bed at night.

There was another issue in all of this - if she DID have hearing loss, and now she doesn't... what happened?!  Did God heal her?  While I know He CAN; I'm not sure why He would.  Why cure her only 7 months after her diagnosis while so many others go their entire lives with PROFOUND hearing loss, let alone just a mild-moderate loss?!

So we told no one.  We waited for the next test.  That test showed normal range as well.

I demanded another test.  A sleep test.  But she wouldn't cooperate; we tried for 2 hours, and she never would fall asleep with all those sensors on her head.

We weren't sure if we wanted a sedated test.  She was so little and had already been under anesthesia before for her tube surgery.  Did we really want to put her under sedation again, when the first sedated test had apparently not even been accurate?  Definitely did not sound worth the risk.

Loving on Bubba

Getting a piggyback ride at church from Sissy

All 3 kids posing for Easter pics

So we continue to go for hearing booth tests and speech assessments every other month.  Each time she has tested in normal range with her not responding at one pitch... and the doctor assures us each time that even if it is a permanent loss in that one pitch, it isn't enough of a problem where she should be aided.  And each time her speech has been testing within her current age.  They said they will keep monitoring her and that if she stops progressing in speech or if she regresses, then a sedated test would be necessary.  But so far, she keeps growing in her speech abilities!

 It has been one crazy roller coaster ride, but I really am thankful for all the things that I have learned. There of course is the chance that her hearing actually improved, maybe that even God healed her hearing… I don’t know and I’ll never know for sure. I have had so many questions, but I also realize that for most of them I may never have answers.  I had a lot of hurt and anger at first, and thankfully a friend of mine asked me if I would be mad if God had healed her, which of course I answered no! And I realized in that moment that that’s the kind of attitude I’m gonna have to take on this, no matter what really happened. So even if she never had hearing loss, we are going to be thankful to God as if she did and He healed her, because if she has normal hearing then there’s nothing to worry about! And all good things come from Him anyway! So basically when people ask me why she’s not wearing her hearing aids now in public I tell them that we’re not sure how or what happened, but her most recent tests show that she has normal hearing - and we’re praising God for that.

Blakeley LOVES her baby dolls!

She loves magnifying glasses!

She HATES pools and splash pads, so she spends her time filling
buckets with water in her dry swimsuit!

 No matter how we got here, we are thankful for God's provision for Blakeley's hearing.  And she is hearing and speaking normally for an almost 2-year-old third-born child.  My true identity should have always been in Him, no matter the needs of my children.  And I have taken some time to go through all the emotions, shed the identity and constant worry, and have recently started looking at how I am going to fill my time and purpose, since so much of my life had been on-hold throughout that 7 months she was labeled as an HOH child.  We have held onto her hearing aids because insurance only pays in part for them once every 5 years.  Throughout all this testing, I didn't want to get rid of them until we were sure she doesn't need them.  I'm still not sure that she never will.


So  we need wisdom in knowing when the right time will be in donating them to someone who needs them.  Sometimes I wish I hadn't ordered her hot pink ones, since that might not be the preferred color of others in need.  But it is what it is, and I am thankful that someday when the time is right we can gift someone else the gift of hearing who will need it.

From September 2018 to May 2019

Life is good, and it was in the middle of all this too... sometimes the good is in the stretching, trusting, etc.  And I take comfort in knowing that it was never my fault she was diagnosed, so it can't be my fault that I possibly misled so many people without knowing it.  We lived the truth we were given, and looking back, I can say that we did everything in our power to help our daughter how we were told she would need.  I don't regret how hard I fought for her, and I am no longer embarrassed by how far I pushed myself to provide for her what we were told she needed.  I felt guilty for a long time that my daughter's hearing is considered normal while so many others' aren't.  And maybe someday God will use this new awareness and passion in our serving of others, but the guilt is gone.  I found out how strong I can be.  I found out how strong God's arms are when He holds me as I fall apart.

And Blakeley can hear.  So that is why her hearing aids are in a drawer at home.

Our Hearing Loss Journey Part 3 - Speaking vs Signing

*This post has been edited from its previous version.  I originally posted examples of parents sharing their struggles with this topic - all names and pictures were blurred and marked out.  However, some people did not approve, so this post was edited to not include those.  I completely understand and am very sorry to anyone who was offended.  I hope no damage was done to anyone, as a fellow parent on this journey, I would never want to cause more stress to anyone else.  Thank you.*

When we first learned of our daughter, Blakeley's, hearing loss we did what most parents do - we did whatever it took to fix what was wrong with our child, if possible... right?!  Isn't that the thing we want to do?  If they are sick, and medicine will cure them - you give them the medicine.  If they have a condition where surgery could fix it - you choose the surgery.  If your child cannot see, you get them glasses.  Well, if your child cannot hear everything normally, you want to give them whatever is available to give them the most opportunities in life...

I had never questioned this kind of response in parenting until my daughter was diagnosed with hearing loss.  She wasn't profoundly deaf, so hearing aids were an option.  Our insurance covered most of the cost (praise the Lord - we have met so many families that have to wait for so long because they have to pay $9,000 out of pocket!), and we had met so many other families that had chosen this easy and readily available option.  But as we entered the "hearing loss" world more and more, we soon encountered the "Deaf Gain" community.

What is the difference, you may ask.  Well, it really is just a change of perception.  Basically, the difference is when you go from only focusing on the hearing deficit your child has at diagnosis and shifting to welcoming all of the community (and benefits of that community) that a Hard of Hearing or Deaf person gains with their disability.  Yes, a HOH person may not be able to hear certain pitches of sound, so there may be loss of opportunities in the hearing world, but they will gain connections with others like themselves that they may never have otherwise.  The people in the Deaf Community are loyal, and they are fierce.  They are strong, because they have to be.  They are proud of who they are, just the way they are, because many times everyone else treats them as if they are lesser than - less able, less intelligent, less valuable... and nothing could be further from the truth.  And they know how to advocate for themselves and one another.  So, not just "hearing loss", but also "deaf gain".  It is a pretty powerful shift that I resisted at first, disagreed with for a while, but now see the beauty of with gladness.

I shared in previous posts about how I felt strongly that we should learn ASL (American Sign Language) as a family as a support language for the present, and a backup language for the future.  If it was likely she would lose more hearing, then I didn't want her to have to make a huge transition as an adult that would be so easy to prep for as a child.  So we enrolled in an ASL class at our local library.  We also downloaded sign apps on our phones, watched signing shows for children at home from Youtube, and enrolled for online courses (which some are actually free to families of children with hearing loss - pretty awesome!).

In our ASL class, our teacher is a young woman who was Hard of Hearing as a child who later lost the rest of her hearing in college.  She had not been allowed to learn sign, she was forced to speak and wear hearing aids, she was in a school where no other children had hearing loss... I knew MANY families who had similar stories, except most did use ASL as a supplemental language (for when hearing aids were not being worn or in crowded/loud places where hearing is even more difficult).

Until I heard her tell her story, from her point-of-view, I had NEVER considered "forcing" the word I would use on teaching kids with hearing loss how to speak.  I learned that because I am a hearing person, I think like a hearing person.  I am not offended by the term "hearing impaired", because I only think of it as the medical term it is.  I am not upset when I see a child with a cochlear implant, because I see it as an opportunity to get back what a person would normally have.  And until I took this ASL course, I never knew that to many in the Deaf Community, it is a statement of "something is so wrong with you, that brain surgery is necessary to change it".

I have never been a person with hearing loss.  So I am not used to receiving the message that just being me, how I am, is wrong, is something to fix.  I am not used to knowing that I am different than everyone else in my family, just being the way I am.  I didn't know that there are families of multiple deaf generations who do not pursue assistive technology of any kind, nor do they make their children learn to speak.  They all sign.  They are all accepted in their family, just as they are, without trying to fix anything.  My eyes were opened, and my mind was puzzled.

And I'm not saying that learning these things means that I now think someone should never get a cochlear implant or learn to speak.  It just means that these decisions are more difficult than "there is a problem, let's fix it.".  Every decision made by each individual family unit for each individual child, while almost always made with good intentions, may carry with it deeper messages to your child's inner voice.  Just one more thing to add to the list of to be mindful of, to consider, to fight... None of these decisions are simple, nor are they always right or always wrong... it is hard.

So we decided that we would offer our daughter as much as we could of both worlds, and someday when she grew up we promised each other and her that we would be fine with whatever world she chose, even if that meant both worlds or the one we were not naturally a part of.  We learned about silent dinners, deaf preschools, deaf camp, and many other events/places where hearing loss is the normal and hearing is the rare thing - sometimes even the looked-down-upon thing.

In order to be able to give our daughter as much of both worlds as possible, we would have to do many things - learn sign and sign at home, to all of us in the family, often.  We would need to attend silent dinners and other events where signing would be the form of communication, putting ourselves way out of our element.  We would also have to take our daughter to speech therapy, provide her with technology that would help her hear the world around her (fill in her hearing deficits), and actively participate in practicing her speech all day, every day.

It was exhausting just thinking about it.

We loved our sign class.  We loved the fun of teaching what we learned to our kids, and it was awesome to watch them use what they learned.

We found a speech therapist at a non-profit that offers free services to children with hearing loss under the age of 3!  The clinic is called Hearts for Hearing, and our Auditory Verbal Therapist is Jenna.  She is amazing.  And she loves our Blakeley girl.  Blakeley is feisty and doesn't always play along.  She has her own ideas, but Jenna patiently waits, reiterates, and sees the pay-off most of the time.  Auditory Verbal Therapy is speech specifically designed for those with hearing loss, and with children it is play-based.  My older children have received typical speech therapy from some outstanding therapists, but their sessions are usually done without me in the room.  They do 28 minutes with the therapist without me, and then the therapist summarizes to me what they worked on, how the child did, and how to practice at home in the last 2 minutes of a total 30-minute session.  It is not like that with AVT.  Jenna and I sit on either side of Blakeley, and whatever Jenna models, I repeat, and then we wait for Blakeley to repeat it.  I love seeing and doing exactly what the therapist does, so that I know exactly what to do at home!  I love the practice in a one-hour session of being so hands-on, so that the way I play with Blakeley at home is naturally molded by those practices.

But it is so incredibly strange to feel like I have had to lie, or omit the whole strategy we are implementing as a family, to both worlds.

To those we have met in the "deaf gain" community, we have emphasized our desire for Blakeley to be accepted as she is (which we really do want), that we would want her to find connection in her life with others who understand her experience (which we really do), and that we would support her no matter what communication mode she chooses when she is old enough (which we think we really do - that would definitely still be so hard if she chose to only sign, but we would try to do the selfless thing).

To her speech therapist we have emphasized our desire for her to hear and speak (which we really do want).  MANY speech therapists do not approve of signing with children who struggle with speech.  They see it as an intrusive crutch, an interruption to the speech process, and something that holds a speaker back instead of encouraging speech.  Some studies show otherwise, some support them.  Some speech/audiology clinics used to or even still do require all patients/guardians to sign a contract promising not to use sign language!  I gave myself away on accident several times when I would instantly sign "drink", "eat", or "all done" to Blakeley when she would be fussy and not cooperative with Jenna during a speech session.  I would instantly stop and try to act like it hadn't happened.  She never grilled me about it, but she has occasionally reminded me to "give verbal cues and wait for a response before giving a visual cue."  Thankfully, she has never told me not to use ASL, but obviously as a speech therapist, it makes sense that her priority would be verbal speech.

So I have felt torn for the past 6 months, acting the part that my current environment prefers.  It has been confusing sometimes.  It can be frustrating.  But the truth is that I see both sides.  I totally understand where they are all coming from, so I have played along to their preference because I want both.  And Blakeley is so young.  I felt it would be irresponsible to wait until she is old enough to choose how she wants to communicate, because her ability to learn both languages at her current age is so strong!  Children learn language so quickly, and by the time she is mature enough to choose a world she prefers to live in, her ability to soak up new language will have diminished greatly.

We are not alone.  I have heard many other parents in our situation speak of the same struggle.  Others completely disagree that it is a struggle at all - they want their child to hear and speak, so why complicate things?!  Or they want their child to feel completely accepted as they are without interference, so why complicate things?!

And I totally see where they are coming from too!  I get it.  And when Blakeley is old enough for all this to be explained to her, I hope she'll understand both sides too.  I hope she will see the love that our struggle and choices have been bathed in.  And I have prayed that she will become the well-rounded, contributing, empathetic, and accomplished woman that we have envisioned when looking at her future, in our dreams, and in our hearts.

Be looking for Part 4 soon - this journey just keeps getting crazier!

-For insight into the experience of getting her diagnosis, Part 1's link is here.
-To read about the process of getting her hearing aids, Part 2's link is here.

Our Hearing Loss Journey Part 2 – Hearing Aids

After our daughter, Blakeley, was diagnosed with permanent hearing loss in June, the tedious task was getting her hearing aids.  I recently wrote in Part 1 about her diagnosis and how blessed we were by an audiologist to just take me at my word about her diagnosis and go ahead and 1)allow me to schedule the hearing aids appointment, 2)get her ear molds ordered and 3)order her hearing aids – all without the diagnosis report from the ENT’s office who did the sedated ABR in June!  The ENT’s office took forever to get the report to the audiologist, and if we had had to wait all that time just to get the molds and aids ordered, who knows when we would have finally got her aided!

So my husband went with me to all audiology appointments after her diagnosis, because we were both afraid to ever go alone again.  We stopped living in our naïve ignorance and became very intentional about proactively reading, asking questions, and not assuming any of the doctors or their offices were just going to tell us what we needed to know.  I went to the public library and looked up every book they had on hearing loss.  One book that I absolutely loved and read cover to cover (some others I realized after starting them, that they were off-topic or too topic-specific, and didn’t finish them), was Shouting Won’t Help:  Why I and 50 Other Million Americans Can’t Hear You.  My eyes were opened to the world of limited hearing, hearing aids, and the challenge of living in a hearing world. There are millions, literally, of similar stories to this author’s, and it was both challenging and encouraging to read an adult’s point of view, since my daughter’s world is quite small and I was at a loss as a hearing person on how to prepare her for the big rest of the world.

Even more challenging is that Blakeley’s diagnosis is the opposite of what most people with a hearing disability have.  Most people with hearing loss/deaf gain, especially those who are Hard of Hearing (having partial hearing, but not mostly or completely deaf), have loss or limited hearing in high tones/pitches while still hearing a lot of low tones.  Blakeley’s audiograms show that she has mild loss in high pitches and moderate loss in low pitches.  This makes hearing way different for her.  All sounds are made of mixed tones, especially voices.  Low tones are what give sounds their richness, fullness.  I noticed after her diagnosis Blakeley only turned or jumped at loud low tones, when she would easily turn toward softer high sounds.  We started talking to her in high pitched voices (as much as we could) or very closely to her ears.  We noticed she slept hard during storms, door slams, etc… and really the only time someone’s voice woke her up from sleep was my son’s 4-year-old high pitch voice.  The first sounds she made were Ds, Ts, Ks, Gs, which are higher sounds than the usual sounds most kids start with Ms, Ns, and Bs.  In an interesting article I read about the Bizarre World of Reverse Slope Hearing Loss, the writer had an extreme case of reverse slope hearing loss, and he could only hear the pluck of the pick on a guitar string rather than the chords being played by the same strum of the guitar.  That example has very much stayed with me, and it has made we wonder every day just what the world sounds like to my daughter.  Sure, she hears, but what exactly does she hear?

We were told by our amazing audiologist about several programs that are free to families with children who have hearing loss, and she did all the calling and paperwork for us to get started in these programs.  We live in Oklahoma, so one program here is called SoonerStart.  We did introductory paperwork and meetings similar to IEPs done in schools.  The woman who meets with us from the program has to cover a vast area and many families, but on the occasions we have met she has given me several resources regarding sign language and helped me evaluate if Blakeley is delayed in any milestones of development.  She also encouraged me to read 10 books a day to Blakeley once she had her hearing aids for language bombardment, which is difficult to do because Blakeley gets very angry if you go past the first page of any book! Ha!

We were also told of a non-profit called Hearts for Hearing.  Originally and currently based out of Oklahoma City, but there is a Tulsa office.  We were told that they would purchase Blakeley’s hearing aids for her and provide any audiology and speech therapy services we need until Blakeley is 3 years old.  We were also quoted that if we went through the audiology office we had been visiting, the expected portion for us to pay would be somewhere between $300 and $800.  We were also initially told that if we went through Hearts for Hearing to attain hearing aids for free, we would have to use their audiologist and could only have appointments on Mondays.  I was worried that even though it would definitely help our finances, but the idea of such limitations of availability of appointments and with the quote through our private insurance being so little, we went ahead and ordered her hearing aids through the audiologist that we had already fallen in love with and felt so taken care of by initially at the Scholl Center.

I had never seen a child with hearing aids, even as a public school teacher for a decade.  I was nervous about what color to choose for Blakeley.  At first I thought we should get the skin tone color so they were less noticeable, especially since the sweet baby has barely any hair! I pictured these big plastic hook-like shapes over the tops of her ears, and I just wasn’t sure I could get used to such a thing.  The thing with hearing aids is that you only replace them every 3-5 years, because insurance won’t pay for new ones any sooner.  Making that decision for her – the accessories she would wear at all waking hours until she was 5 years old - was a lot of pressure for me.  My oldest daughter’s favorite color changed every month or so once she learned her colors, so I was afraid of picking an actual color for Blakeley.  But I also wondered if getting a skin tone implied that I was ashamed of her hearing aids, which perhaps I was a little.  Not ashamed for me, but nervous for how she would perceive herself – how others would perceive her.  I finally realized, though, that Blakeley will think about them however we model for her to think about them.  If we consider it normal, and maybe even fun, then so will she.  And when my oldest daughter had to pick out glasses, she easily and confidently picked out bright pink frames… how was this any different?!  A friend of mine also explained to me that sometimes when her daughter who wears hearing aids is angry or frustrated, she takes them off and throws them, often during car rides.  I imagined me upside down in my mini van trying to find neutral colored hearing aids at least once a week and immediately let that be the deciding factor – we would order the brightest pink pair available!  For molds, there are many colors with things you have have melted in – glitter, shapes, tie-died colors, etc.  I figured if she was going to wear them every day until Kindergarten, then I should have fun with it!

While we waited for the hearing aids to come in, I went ahead and ordered 2 pairs of Ear Suspenders for Blakeley to begin wearing and getting used to them.  I am a headband/bow-obsessed mama, so Blakeley was used to always wearing an accessory on her head, but not elastic ones and definitely not with rubber over the ears.  So for several weeks before she was aided, I had her wear her Ear Suspenders every day.

On August 7^th, a month and a half after she was diagnosed, we went in to have her hearing aids put on for the first time.  I took her picture at the Wendy’s we ate lunch at right before the appointment, because for some reason I felt something about my daughter was ending.  I was so excited but also sad.  Excited that her world would open up to so many more sounds!  Sad, because her world as she knew it was going to change; she had no idea that what she knew was flawed, limited.  And it wasn’t her fault that she couldn’t just be in the world as she is.  In just a few moments she would know differently, and she would never be able to go back to being ignorant of the fact that she was not whole on her own.

At Wendy's before the hearing aids appointment!

There was an entire kit that came with the hearing aids, and the audiologist went over all of it with us...  What to do if they got wet.  Where to check to make sure they weren’t clogged with dirt or wax.  How to check batteries.  Where to order batteries.  How to put the batteries in and out.  How to know if she needed new molds.  When to have them on, when to take them off and to remember to turn them off…

And then Kyle held her as the audiologist put them on her for the first time.  She was crying because she didn’t like being messed with, and then as soon as one was in, she went silent.  Stunned silence.  The room was not noisy, but I thought of the noises she hadn’t been hearing before – the air conditioning, our two older children quietly playing in the corner… in that moment I was too happy for her to cry.  And I felt nothing but gratitude for this doctor who seemed to have rescued me from fear and ignorance.

To view this video:  https://www.facebook.com/keisha.mackenzie/videos/10156691584946047/

I am ashamed to admit that the only moment I cried was when I saw the bill.  I was grateful that I did not owe the original amount of $9,000 for the pair of hearing aids, but I was shocked and not financially prepared for the $1,500 part that we were responsible for.  The $300-$800 quote we were originally given was already a bizarre range, but I was prepared for that.  $1,500 was quite different!  And we were told if we did not pay the $1500 in full, we could not leave with the hearing aids that day.  There is no payment plan option, and I just could not leave them there.  After seeing her response to hearing everything around her, I just couldn’t leave them behind.  So we left that day with only a few cents left in the bank, and I was sweating all the way home thinking about how we were going to make it through the next week with the groceries we had in the house and the gas we had in the cars.

We were very blessed to be helped by our parents once they heard that the bill turned out to be twice the higher end of the original quote, and even though I hate accepting financial help, and even just speaking about it makes me stressed, I was overwhelmingly grateful and unable to put into words how loved I felt in seeing our family be not only void of shame over our daughter’s disability, but wanting to help her the same way we want to help her.

The first two days of her wearing her hearing aids were EXHAUSTING!  It took me forever, it seemed, to get them in just right where there wasn’t a screeching feedback where air was getting in… and then a minute later, Blakeley would pull them off.  So I’d put them back on, and she’d pull them off.  I was sweating from having to hold her with my legs so I could twist and pull and push with my hands… and then I noticed after a day and a half of me being just as stubborn as she is, she took them off less with longer times of wearing them in between.  By the 3^rd and 4^th day, she barely touched them!

I noticed after being aided, Blakeley would bend over as I carried her on my hip and watch my feet on the carpet in the morning; she had never done that before.  She scream-cried when I turned on the vacuum, which had never bothered her before.  She screamed less and less than she had prior to being aided; usually she squalled for no reason – happy, sad, mad – just the most shrill shriek that makes your eyes flutter and body tense.  She did that less and less, and we were thankful!  We also noticed that people defended her when we got onto her when she did scream, and no one ever was upset when she would cry in public.  Old ladies would tell me, “Oh, you leave that sweet baby alone; she just wants to hear herself.”  I have often joked that all children should wear hearing aids so that no one will judge a mother when her baby is inconsolable in public!  Ha!  It has been so refreshing to see how sweet people are, and how helpful our village of family and friends have been!

And, of course, now it is very normal for me to see hearing aids on a small child and not think twice about it.  We see other babies, toddlers, school-aged children, and teens in the waiting rooms and in the pictures on the walls of all our appointments.  We have even met two other children while out and about who were wearing hearing aids, and it was fun to have an instant bond with strangers!

And we began all the testing suggested to make sure her ears were the only thing affected by the nerve damage causing her hearing loss.  Blood was drawn as St Francis in Tulsa, an ophthalmology appointment in Owasso, a kidney ultrasound in Muskogee, and back to Tulsa again for an EKG, all the while going to Tulsa for audiology appointments and her regular doctor back home to hear the results of each test.  And on top of that, we began an ASL class and Auditory Verbal Therapy services, but those are a story all on their own!  Be looking for Parts 3 and 4 (I think that will be all?)…

Our Hearing Loss Journey Part 1 - Diagnosis

Written in October of 2018:

I haven’t blogged in a year – a year that has tested my strength, my energy, my emotions, my fears, my vanity, and my priorities.  My last blog post was about my youngest child’s birth story.  What I did not include in that blog post was something that at the time seemed small, insignificant.  We had no idea it would take us on an emotional roller coaster that we are still riding…

Blakeley was born on October 17^th.  She failed her hearing screening.  They cleaned her ears out more and repeated the screening the next day – another fail.  At her one-week appointment with the pediatrician, she had an ear infection.  At a month she still had an ear infection.  A few rounds of antibiotics and her ears were finally clear of redness and swelling, but there was still fluid in both ears.  She had a more in-depth hearing test at the health department and failed it.  We were referred to an audiology office in Tulsa.  A referral to an ENT in Tulsa was also given, because she was so young that local doctors would not treat her.

Now, all of that fits into one paragraph, but that took 6 months to live through.  And to be honest, it wasn’t a big deal for us.  Our oldest child had chronic ear infections and has had 3 sets of tubes due to chronic fluid in her ears.  I was nervous about my 6-month-old having to go under anesthesia in order to get tubes, but I figured that would be what solved the fluid and hearing issues she was having.  For us, it was something we had been through before, just a different child this time.

When Blakeley had the tubes procedure, everything seemed to go really well.  She was only fussy for a little while as she came out of that drugged feeling, and they told us that they were able to do a sedated ABR (the most relied upon type of hearing test) during the procedure.  They said the ABR would have to be read by their audiologist and would be discussed by the ENT in a few weeks at the post-op appointment.

I noticed within the next few days how Blakeley jumped at loud noises more.  Throughout the next few weeks as people kept asking me how she was doing and how her tubes procedure had gone, I repeatedly told them how thrilled we were that she could hear and had better balance when sitting up.

And I figured that was it.  We went on with life with 3 kids, never giving it another moment’s thought.  And when it came time to go to the post-op appointment with the ENT a few weeks later, my husband went to work instead of the appointment, and I took both daughters along so we could have fun somewhere out on the town afterwards.  It was a routine event – I was thinking, ‘He’ll look in her ears, give a thumbs up, and we’ll be on our way.’

But our lives were changed, not because something happened, but because we were told of what had already happened months before…

The ENT continued, “Well, the tubes look good and the fluid drained as it should. Looking at the sedated ABR…”

Oh, yeah!  I had forgotten about the hearing test they gave her.

“…Unfortunately, it shows permanent hearing loss in both ears due to nerves not working like they should…”

Wait… what?!  Is the doctor in the wrong room?   Blakeley has been hearing better since she got her tubes!  Or at least I thought she has… does this paper he gave me even have her name on it?  Well, that is her name and that is the date she had a sedated ABR, but how could she have permanent hearing loss?!  I thought it was just the fluid limiting her hearing.  The doctor was sure, too.  Or did I just assume that?  How can this be right?!

He was still speaking, even though I wasn’t listening.  I was working very hard at trying to look like I was listening, so he kept going, “… the dead nerves interfere with her hearing… nothing can reverse the damage made to the nerves.  The hearing loss is permanent, and there is no cure for hearing loss.  My recommendation would be hearing aids… some people choose not to seek out adaptive technology, but since you as parents are hearing, most hearing parents choose to use hearing aids… if the condition worsens over time, then cochlear implants would be the next option… this side of the audiogram shows low frequencies, this side is the high frequencies… here is at normal conversational volume like we are talking now… it is great that she has already been tested at the Scholl Center before she had her tubes, because they are who I would recommend you to follow up with for looking at the hearing aids…”

By this time I had started listening as hard as I could while also trying not to cry.  I kept swallowing hard, afraid that each time I did, it would squeeze tears out of my eyes.  I am not sure why it was so important for me not to cry, but for some reason I had this great need to control my emotions.  I had 2 daughters in the room, one seemingly oblivious because she was very busy trying to get the eraser out of her mechanical pencil’s lid, and the other was oblivious because apparently, she may not be hearing anything the doctor was saying?!?! 

A million thoughts were going through my mind, like:

What did he just say?

So, what can she hear?

I wish Kyle had come with me.

Why didn’t they warn me that I would be hearing life-changing news today and would maybe want to bring someone with me?!

Well, maybe this isn’t life-changing.  He said “moderate to mild” hearing loss.  I think that is what he said.  I think he also said the left is worse than the right.

Why is he smiling?

The doctor was still speaking, “Because sensorineural hearing loss is due to damaged nerves, we will also need to make sure that other areas of her body have not been affected by nerve damage.  The most common areas affected can be the heart, kidneys, eyes… so we will need to be ordering an EKG, a kidney ultrasound, vision tests, and if she goes without symptoms perhaps also an MRI and CAT scan when she is old enough where she wouldn’t need to be sedated for those… You will also need to think about if you want to have some genetic testing done in order to find out the “why” of the hearing loss… since she has been failing hearing screenings from birth, we might benefit from knowing where the loss comes from… what we learn from the genetic testing does not change how we treat the hearing loss, but it may help point us forward in the right direction if your other children need testing, if anything else may be a concern, or if you plan on having more children…”

Oh, I think he just asked me if I have any questions… I don’t even know what he just said.  I guess I shouldn't ask him to repeat everything he just said in the last 5 minutes…?  Maybe I should.

No, don’t cry!  Don’t cry!  Widen your eyes.

No, Emersyn, I don’t want to try to get the stupid eraser out of your pencil lid!  Can’t you tell that the doctor is giving me bad news?!  Well, maybe you can’t, because he is smiling like he is giving me the weather report on the news.

Did I just say that I don’t have any questions?!  I guess I don’t, because I don’t know enough about any of this to ask questions.

I am going to have to call my husband and tell him what this doctor just said.  I wish I understood this paper and these words more so I could explain it the right way.

So, because I had just said that I had no questions and nodded in agreement with everything he said, the appointment was over. 

I gathered up the baby, the diaper bag, and told my 6-year-old to follow me.  I walked right out of the office, past the window, out the door, down the hall, and started toward the elevator.  The tears started to come, but then I remembered that I was supposed to go to the window to make an appointment in 6 months.  I told my daughter that we had to go back while I wiped my face with my sort-of free hand.

My 6-year-old daughter said, “Mama, what was the doctor saying about Blakeley?  Did he say that she can’t hear?  What are hearing aids?”

“Shhh!  I can’t answer any questions right now.  I have to talk to the lady at the window.”

The lady at the window asked me if mornings or evenings work best for me.  I tried to forget my present crisis and attempted to think what my days will look like in 6 months’ time… “Uh, mornings.  But not too early, I live an hour and a half from here.”

She asks me if some random date in December works.  I ask if that is a Wednesday.  She says no.  I say, “Then that is fine.”  She hands me an appointment card.

We start to walk out again.  No tears this time.  Just fog.  I try to think about what the doctor just told me, and it feels like remembering a dream after just waking up… the harder I thought about it, the foggier it all became.

We got to the car in the parking garage.  I got my phone out. 

I wonder if I can wait until I see my husband in person to say this?  No, I can’t.  I promised my oldest we would eat lunch out in Tulsa – her choice.  I can’t be fun if I haven’t told him.

So, I called him, and I told him what I could remember.  I honestly do not remember much of this phone call, except that I did call him.  And he was sorry I was alone.  And I was sorry he wasn’t there with me to ask his questions to the doctor.  And he lovingly reminded me that while we were completely shocked by this news, God was not surprised in the slightest.  His wisdom felt like a hug in that lonely moment giving such awful news to my best friend on the phone in a parking garage.

Yes, God has always known.  And according to this test, Blakeley had been without hearing since my pregnancy with her, so nothing has changed.  And yet, our world will never be the same.

The ENT had given me two pieces of paper (I think.  Now after everything that has gone on, I am questioning my memory of most things).  I tucked them away with my planner.  One had a bunch of writing on it.  The other had a little writing with a graph – what I now know as an audiogram.

I texted my mom, sister, and my prayer group from church.

I had lunch with my daughters at Raising Cane’s and drove home.

That evening, I googled as many terms I could remember.  And I looked on Facebook for some sort of group for parents of children with impaired hearing.  I joined a group and noticed that at the top of the page it said I had a friend in the group.  I followed the link to find an old friend from college and discipleship group.  I messaged her what I had found out and asked her if she could send me any basic information on what to read, look at, expect, etc.

She sent me several long messages in return.  And they were so very helpful!  She told me her daughter’s story from beginning to present in detail.  She explained some basic knowledge and what to expect in the ways of medical tests and doctor visits.

I admit I spent most of the next day reading as much as I could on the parents’ support group page and googling any terms I did not understand.  I typed up a “helpful information on hearing loss” sheet for my husband… something I wish someone had given me at the doctor’s office.

And I had a good cry.  Something I had needed to do.  By myself, without having to pretend I was fine around my children.  I worried that Blakeley would feel like a freak.  She won’t feel beautiful.  Growing up is already hard enough, and in an image-obsessed world, I wondered how hard it will be for her to see herself in a good light.

And thankfully I found the video “Welcome to Holland”.  It made me bawl.  It made me smile.  It gave me some relief. The filmmaker knew that just like every other parent, I had dreamed of what my child would become in life, what she would do in this world… never once did I dream she would be lacking one of her 5 senses.  The things that help us operate, function, and succeed in this world.  It never occurred to me that my child wouldn’t be perfect.  The filmmaker understood that I was grieving the hearing that my child never had.   I was afraid of the challenges she will face.  I was afraid of the challenges I will face in raising her in a hearing world.  The video explains that what every expectant parent envisions is like picturing and planning an exotic vacation to a dream destination… but instead your plane lands in Holland.  You look around in frustration - this is not the picturesque dream you planned.  Before you were looking forward to experiencing something foreign, but now it is the kind of foreign where you feel stuck in the wrong place.  Before you were thrilled for a short adventure, but now you are permanently on a journey.  You are no longer an excited tourist, you are a baffled outsider.  But soon, and only after some bumps in the road, you realize that Holland isn’t scary or sad.  Sometimes it can be disappointing when you look at pictures of that other place you thought you were flying to, but you eventually find that Holland is unique.  Holland is interesting.  Holland is delightful.

And this is when I started to let go of my dream and embrace my reality.  And then I started to put myself in Blakeley’s situation (which I know isn’t fair, because she and I are two different people).  I wondered if I were in a wheelchair and never saw another kid in a wheelchair, would I feel alone in the world?  And then I thought about how excited I would feel if I did meet another child in a wheelchair… but communication would probably not be a challenge… within the community of those with hearing loss communication is widely varied.  I pictured Blakeley finally meeting another child with hearing aids, but being disappointed if that child only used sign language… how disappointing that would be.  The last thing I want for my daughter is to grow up feeling like she doesn’t belong to the hearing world or the deaf world.

*******

Two days after getting Blakeley’s diagnosis, my son had an appointment with the Scholl Center because he had recently failed two hearing screenings, or ear pressure tests, or whatever it was that he had an appointment for.  Honestly, I was walking around in a cloud.  All 3 of my children had experienced some kind of medical appointments this year due to their ears, and I was drowning in the names or terms for things.  My son is 4-years-old, and he did a very good job of listening to the internist speak to him over the microphone while he sat in a booth.  I was watching him through the window while glancing over to my daughters playing in the floor every so often.

My oldest daughter had failed her hearing tests several years before, and with her history of repeated ear infections over a year’s time, I had been warned to be prepared for the hearing loss to be permanent due to scar tissue.  It had ended up quite the opposite!  She had only needed a second set of tubes so her ears could drain fluid.  She wore the second set of tubes for 3 years and caught up completely in speech therapy.  My blog post on that experience is at https://livingonvicariousgrace.blogspot.com/2015/08/rejoicing-when-she-covers-her-ears.html.

Just this year, over Spring Break, we had to have my oldest’s ear tubes removed because if they are in the ears longer than 3 years, the holes usually do not close back up after they fall out.

Then my son failed 3 tests done over several months’ time.  But thankfully on the day he was in the booth at the Scholl Center, he passed his hearing test beautifully, and the pressure in both ears was fine too!  He has horrible allergies, so it was concluded that perhaps the 3 failed tests from before was due to congestion.

As we were walking out, I thought, This is my chance.  I have a ton of questions about Blakeley, and I am in an audiology office!

I asked the internist on the way out, “Look, I know my appointment today is for my son, and not my baby, but we found out yesterday that she has permanent hearing loss, and I have no idea what any of it means.  She has been seen here before and will be coming back soon to be aided.  Do you have a pamphlet, a book, a website, anything that could give me a starting place in understanding what all is going on with my daughter?”

She was so sweet.  While I was at the front desk making a follow-up appointment for my son, here came the internist with the first audiologist that had tested Blakeley’s hearing when she was much younger – months beforehand.  She was so warm and friendly, and she asked if she could hold Blakeley while I wrote some things down.  I told her everything I could remember from the visit with the ENT from two days before.  And she understood.  She knew the strain my mind and heart were under.  And then, without even seeing the diagnosis report, she made me an appointment for the next week for Blakeley to get the molds for her hearing aids made.  She asked me if I would like her to sign us up with SoonerStart, a free government program that provides services for any child with permanent hearing loss.  I agreed.  She gave me a book about hearing loss and how if affects the whole family.  She also gave me a children’s book to read to my oldest two kids so they could understand what was going on with the baby.

I left with less weight on my shoulders, knowing that the audiologist we were going to be working with long-term wanted me to understand, be informed, and she cared about my child.  I am not saying the ENT did not care about my baby girl; he just gave me too much information in a vulnerable state of being by myself without any background knowledge or forewarning.

*******

The next week at the ear molds appointment, the diagnosis report still had not been sent over to the audiologist’s office.  I was kicking myself in the rear for not bringing the papers the ENT had given me.  My husband had come with us, and he asked her every question he could think of.  She made the molds of Blakeley’s ears, we picked out the brand and color of her hearing aids, so they could be ordered.

When I got back home, I couldn’t find the two papers from the ENT anywhere.  I was frustrated that what seemed like an eternity had passed, and now we had no way of showing the audiologist what the diagnosis was.

*******

A few Sundays later as we sang in worship service at church, I listened to my 6-year-old try to read the words from the screen as she sang.  And I wondered how my youngest daughter would understand the songs we sing, especially for those years before she knows how to read.  Even with hearing aids, I have learned that kids have to learn how to differentiate the sounds into what is important and what isn’t – what is a voice, traffic sounds, the buzz from the classroom lights, etc… will music just be noise to her?  Will the instruments and voices just blend together?  I found myself suddenly grief-stricken, because our family loves music so much… and music is so much a part of the Christian’s life.

I MUST LEARN SIGN.  We ALL must learn sign.

I made these charts with points marking where Blakeley's hearing loss is; sounds above the dots cannot be heard.

Blakeley’s actual diagnosis, according to this test, is “moderate to profound/severe upward sloping to mild hearing loss”.  This type of hearing loss is permanent.  The statistics show there is a great chance that over time she will lose more hearing.  There is no known cure.  There is no known reversal.  That’s it.  My daughter hears many things, but she does not hear them the way I do.  This test tells us that she hears in parts.  Many people think that hearing loss means that it is like the volume has been turned down, but it is much more complex than that.  For example, Blakeley hears the voices around her, but she hears higher tones better (I say better, because with mild loss, high tones may still be muffled or faint), but hardly hears lower tones unless they are loud… think about how we talk.  Some alphabet sounds are higher than others.  Some people’s voices are lower than others.  But everyone’s voice is a mix of tones, and it is the low tones that give our voices their richness.  I have no idea what Blakeley hears when I speak to her.  She hears when my voice is loud, high-pitched, and when saying higher pitched phonic/alphabet sounds.  Like her name, for instance, B-L-A-K-E-L-E-Y, the B, Ls, and A are low sounds.  The ee sound made by E-Y is the only higher pitch in her name.

So how did she learn her name?

She reads lips.

Yes, a baby can read lips.

I sat her on my lap and made absolutely no movements except for mouthing the words (with absolutely no sound), “Patty cake, patty cake, baker’s man”… and she was clapping before I even finished the line...

My baby has already had to resort to survival skills.  Kids with fewer resources learn very quickly how to get by, tricks to survive, and are having to use parts of their intellect that other children do not have to tap into.

Now that I have been immersed in the “parent of a Hard of Hearing child” world for several months, I have read many posts in my online support groups from parents who question and doubt their child’s ABR/hearing tests.  They just cannot believe that a child who responds to sound can be deaf or HoH (hard of hearing).  And I can imagine their smiling Facebook profile pictures change into looks of shock when one of us has to comment “Your child is reading your lips, not hearing your voice.”  I know exactly what that moment of shock, shame, and sorrow is like… shock because it never occurred to you.  Shame because it never occurred to you.  Sorrow… because it never occurred to you.

1st day to wear her hearing aids around 10 months old!

But thankfully after months of appointments, tests, hearing aids, reading books and articles, taking an introductory ASL class, immersing Blakeley in Auditory Verbal Therapy (speech therapy designed for person with hearing loss), and just living life day-to-day with hearing aids just being another part of everyday detail and routine in our home, we are no longer fearful.  All we have ever wanted from day 1 is to give Blakeley everything she needs to be prepared for all that may come her way, and so much has happened since then that I couldn't possibly fit it all into one post (not even a ridiculously long one like this)!

To be continued… be looking for part 2 soon (and parts 3 and 4, I'm sure, ha!)