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 17th. 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!)
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