"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.