Saturday, August 29, 2015

Rejoicing When She Covers Her Ears

 I sat very still trying to listen and think and control my feelings all at the same time.  I am naturally a terrible listener; I have always been a better thinker and speaker, although unfortunately not always in that order.  But there I sat trying to understand what the graph on the piece of paper meant for my daughter, for her future.

"In the 4 categories, as you can see here, she did not hear the low tones in either ear.  She also did not hear the mid-low tones in either ear.  She did hear in one ear in the mid-high tones, and then she heard in both ears the high-tones."

I had sat in an observation room during the screening, and at first I was convinced that my daughter, Emersyn, had not understood the instructions of the test.  She was to raise her hand anytime she heard a sound, but I knew that sounds had gone off while her hand hadn't moved.  I was just about to voice my concern when she finally, without any reminder or redirection, did show that she heard a sound - apparently the mid-high tones that was being explained to me afterwards.

"Due to her medical history of constant ear infections, be prepared that there may be scar tissue.  It is common with that many infections to cause permanent damage to get these kinds of results of profound hearing loss."

I had already gone into teacher-mode, all those years of looking at test results for other people's children and asking about the areas tested and the methods used during testing.  And, of course, as a school teacher, I was always needing to look at the practical implications of test results for any needed change in my methods of instruction for each child.

So I started asking questions, "If she can only hear high-pitched tones, then why did she seem to only hear the last word of each sentence-story when she was looking at the cards and repeating the sentences back?  When people speak, most of the time, we end in low tones, not high tones."

The woman was nodding, but then she replied, "Perhaps she was reading lips."

And then I realized how many times I had had to repeat myself to Emersyn, only for her to finally hear me when I was facing her... what if my daughter really was deaf, at least partially?!  I had originally brought her to the clinic for a speech screening, I wasn't really worried about her hearing.  The thought hadn't occurred to me in a serious way at all.  Being a 3-year-old, she naturally is a terrible listener (and she's my child which is a strike against her listening as well).  Most kids her age speak loudly, don't know how to whisper, and don't follow directions well.  It was her speech that I had been concerned about, since most of her friends about the same age as her spoke much more clearly.  I was still playing "translator" a majority of the time for Emersyn when she spoke to others.  And now that made sense too, because her hearing could easily and directly determine this stagnant progress of her speech development.

As we left the clinic that day, I was no longer concerned about my daughter's lack of clarity in her speech, I was amazed she spoke as well as she did!  I had to mentally retrace her medical history to make sense of why she did have such a great vocabulary and how she coped so well in conversation... Yes, she had had many ear infections - basically she had one for an entire year from age 11 months.  But before all of that, she spoke very early and caught onto words very quickly as a baby and toddler.

It is interesting how perspective can change so  quickly.  I went into the clinic that morning convinced she was delayed in articulation, and I came out of the clinic amazed at my daughter's coping skills!  And I was scared of what the near future would might possibly look like - more doctors, more tests, hearing aids, cochlear implants, speech therapy?  My daughter might have to go through all of that, and as the adult I also feared the amount of money all of this was going to take.


I called my husband on our way home to tell him.  I had been so strong while we were at the clinic, and even as I was getting the kids back into their car seats.  I had been thinking of strategy - perhaps if we made sure we were always face-to-face with our daughter and tried to speak in higher tones, then that may help in communication.  And I was telling my husband my strategy after explaining the results and what the clinician had warned me to be prepared for...

My husband was quiet, and I could tell he was trying not to cry.  He started to speak of how many times we had disciplined our daughter for not listening, when he realized now it may have been she just didn't hear us.  I started to think about how stubborn I thought Emersyn was.  How she ignored us constantly, and how frustrating it had been.  We should have known, or guessed... we should have known it wasn't just typical 3-year-old stuff...


My husband reassured me that God was still in control.  That He knew about all of this long before we did, before we even knew Emersyn.  God provides all we need, whether it be forgiveness, understanding, patience, time, compassion, love, and money for whatever was headed our way.

The rest of the day went on normally, I started researching audiologists and hearing aids and hearing loss and deafness.  I sent out a text to a few close family members and dear friends explaining simply what we had found out, what we feared, and how we would like them to pray.  I should have called these people, but I honestly didn't want to talk about it out loud - and that is so strange for me.  I don't have secrets, and I don't have a problem sharing things, even if they are personal.  My usual philosophy is that honesty and being open is what Christians are called to do and be.  How can we live life together if we are closed off or only show the good while hiding the bad?  But for some reason, this was more difficult, at least in these first moments, to say it out loud and discuss.

The next day I had a staff meeting at church,  No one in the meeting knew anything about what Kyle and I had learned about Emersyn's hearing the day before, but the meeting did turn to discussing how hearing-impaired persons sitting in a room feel like they are not included in the group, in the conversation.  I stopped listening, because I was having an imaginary movie play in my mind - Emersyn was a teenager in class desperately trying to keep up with the discussion.  She was trying to listen and fill the gaps with reading lips, and trying to formulate her opinion on the subject, but didn't want to share it because she wasn't sure her teacher and classmates would understand her...

That image broke me.  I surprised myself with my tears.  I began to quietly cry.  I tried very hard to not let the tears fall, because we were in the middle of a meeting that had everything to do with church business, and not my personal fears.  So I tried to subtly wipe my eyes dry and continue with the meeting at-hand.  Toward the end of our meetings, we always go over prayer needs in our congregation and pray together, so I thought I should add ours to the list.  And of course, as I am talking about this for the first time out loud since telling Kyle, I cried again.  I used the word "deaf", and it surprised me when I said it.  Of course our church leaders prayed for Emersyn and for us, and I realized it is always better to talk about these things instead of just carrying them around on our own.  God created us to live in community, so sharing and bearing each other's burdens is always a part of that!

A few weeks went by, and we finally got an appointment with an audiologist.  They did several different tests during the evaluation that focused only on Emersyn's hearing.  At the end of the evaluation, the doctor explained that Emersyn could hear perfectly all of the sounds that were sent through the bones next to her hears, but that she did not hear any sounds that were sent through the ear canal.  She further explained that the results show that Emersyn does not have any problems with the mechanics of her ear structure for hearing.  So the problem is in the ear canal.  She said she was unable to see the ear drum to see if there is any permanent damage or scar tissue, due to impacted wax in both ears.


I, nervously defended myself, saying that I do clean her ears.  The doctor said that some people's ear wax just doesn't work it's way out of the ear like it should,  I had never heard of this before, and was relieved to hear that it wasn't my negligence that caused such a thing!  The doctor said that after the wax was removed, only then could she see the ear drum and do further testing.  She said to call the pediatrician for wax removal.

I called the pediatrician's office, and of course, they said they don't do that.  That I would have to see an ENT.  I said, "Do I have to come see you first in order to get a referral to an ENT?"  Thankfully, they said no and recommended an ENT in town!

I called that ENT's office, and we were given an appointment date and time a few weeks' away.

So about 2 weeks ago, Emersyn sat surprisingly calm and very still while the ENT shot warm water into her ears, while I held a cup and caught the water as it came back out... nothing much came out with the water.  So then, the doctor got a tiny metal tool that had a long needle-like part with the tiniest scissors-looking thing I had ever seen.  Again, Emersyn sat very still while the doctor pulled her ear back and put the tool into her straightened-out ear canal.  She pulled out the nastiest lump of wax, the shape of a watch battery, but obviously smaller.  She showed it to Emersyn.  Em's face was priceless, as you can imagine.  Then the other ear - this lump was even more disgusting because there was a bunch of blue in the center, which the doctor explained to be Emersyn's old ear tube stuck in the wax!

They tested her hearing again, but the results were the same.  I was very disappointed until the doctor examined the ears and said that she found NO SCAR TISSUE!  There was a ton of fluid, however, behind both ear drums, which was "probably the only cause of the hearing loss"!  She recommended having tubes put in her ears for the 2nd time, and that that really should take care of the problem!


This past Thursday, Emersyn and I had to be at the hospital at 6:45am to prep her for her procedure.  We were excited to see that my mom pulled in right behind our car in the parking lot!

Emersyn has told me several times that Mamoo is her favorite person in the whole world, and yes, the first time she said it, I made the mistake of asking, "More favorite than me?!"... she said yes.

This made Emersyn a lot less nervous, grumpy, and sleepy!  We checked in, and they almost immediately took us back to get dressed and ready for her procedure!

She wasn't always happy to do what the nurses asked her to do... but she always eventually complied!

We were in this tiny room for quite a while, and Emersyn had waited and been calm as long as her personality would allow.  She started joking around and getting a little delirious-acting.  They hadn't even given her any drugs, so I was getting worried how this was all going to go.

They did come get us and take us to the procedure area.  The nurses and doctors came to run us through what all was going to happen.  Emersyn got very weepy and wouldn't cooperate with them, reaching for me and crying.  I explained again to her about them putting a mask on her, blowing up a balloon through the mask, and then falling asleep while they fix her ears.  They started to wheel her away, and of course, she only cried more.  My throat was very thick-feeling, which could only mean that the moment I spoke or swallowed, my tears would fall as well.  I stood and went to walk back to the waiting area, but I wasn't sure where to put all my paper clothes or how to get out, so I had to speak.  "What do I do to go?", and my voice gave me away completely.  It quivered and my tears betrayed me as my voice stopped working.  The nurse answered me, and I got the heck out of there!

About 10 minutes later, the ENT who cleaned her ears and performed the procedure said that Emersyn fell asleep as she held her and then the procedure went beautifully, and ickily.  The fluid in Emersyn's ears was very thick, the doctor said it was like she had ear plugs in all this time.  She said she was very excited about the progress in Emersyn's communication that she expected to see in just weeks.  She warned me that she might be very sensitive and easily spooked by sounds now, or at least until she adjusted.

About another 10 minutes later, I was led to the recovery room.  There was another little girl's voice that sounded very alert and hyper, but the nurse was blocking, so I couldn't see how little the child was.  I walked closer, expecting them to wheel Emersyn around the corner or something, but the nurse moved, and I realized that the little girl I was hearing was Emersyn!  She was energetically talking about all sorts of things, and I was concerned because she was speaking very loudly.  This is typical of Emersyn, but I was hoping perhaps she would realize how loud she was already.  As I sat with her for a few minutes, I realized that she was very out of it - jibber-jabbering and a little dazed.

Within the next hour of waiting to see how she would come out of the anesthesia, she drank juice, ate crackers, and acted pretty normal, just maybe a little more hyper than usual.  It could have been the drugs or the fact she had been sitting pretty still now for the last 2 1/2 hours!

They finally told us we could go home, and Emersyn was very excited about putting her own pajama top back on and getting donuts on the way home!

We got donuts, went home and watched movies, and Emersyn taught Mamoo how to play CandyLand!  A friend of Emersyn's had left her a gift bag of goodies too on our front porch while we were at the hospital, and Emersyn was beside herself with excitement!  She got a new necklace, so she had to put on a fancy dress to match!

And then it started, she started jumping at loud noises.  When the baby cried, she would cover her ears and say "That's too loud!"  Something my child has never done.  When she ate sausage links at lunch, she asked me why it made that sound when she bit into it... she has had those links dozens of times before and had never asked this...


Yes, eventually I will have to teach her that plugging her ears can hurt someone else's feelings, and it could be disrespectful, depending on the case at-hand... but for now, my heart leaps and I thank my Lord for His blessings when she tells me, "Mama, you laugh too loud" and covers her ears!

Sometimes God doesn't bring happy-endings like this right away.  Sometimes the struggle is the gift that molds us and shapes us into someone more like His Son.  We all deserve much worse than what we have.  We are selfish, greedy, hateful, fickle, and ungrateful creatures.  None of us deserve our lives, let alone our sight, hearing, or speech.

I do not know why God protected Emersyn's ears from permanent damage.  The doctors all said they were surprised due to her intense ear infected history, but today she is already hearing sounds she hasn't heard in at least a year or more.  I can't wait to see how her speech improves as well as she hears what others around her are actually saying when they articulate words.

No matter His reason, I am thankful.  He would still be good if she was permanently deaf or anything else.  God isn't good because of our circumstances; He is good because of His character and how it affects this fallen world.  I can't imagine what it would be like without Him in it, around it, controlling it all.

“God's will is what we would choose if we knew what God knows.”― Nancy Leigh DeMoss

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