Extra's

I quickly found my footing as a mother with a hard of hearing child.  I wasn't wearing hearing aids myself at the time.  I found this inner strength that I was assigned by God to do something different and unique with my life.  I wouldn't be raising this child in the normal sense.  I had extra's to attend to.  I had to make sure his hearing aids were cared for and protected.  This was easy when he was little.  At the time it didn't seem so.  Nursing him was sometimes a nightmare!    L would spit milk at me to be playfu and when he smiled with a mouth full of milk it would dribble down the side of his face and straight to his ear.  This quickly became a problem because Hearing aids CANNOT get wet.  They were incredibly expensive ranging from 1500 basic to 8000 a piece.   We bought the basic.  When you are making barely  enough to meet your basic needs these expences become a great stress in life.  The hearing aids could not get wet.  We made dr. appointments and were able to get some rubber sleeves or condom like covers for his hearing aids.  This also helped because as soon as L could locate his ear with his hand he would pull his Hearing aids out and they would go straight in his mouth.

I began to notice at this time that L would only nurse on one side.  I felt like a lopsided cow!

He had a tight AC muscle in his neck that only allowed him to turn his head from center to one side.  I was so concentrated on getting his hearing aids  on so he could hear language and learn it during the first year that I didn't notice it.  I didn't notice it for several months.  I was busy changing diapers, doing dishes and laundry, nursing and playtime with K.  But when I finally noticed we got into a Chyropractor and my sweet sister in law who is a massag therapist showed me how to massage it and stretch it.  Over time he gained mobility to turn his head to the other side.

The stress of keeping his hearing aids on became overwhelming at times.  His Dr. would tell me it is vital that he had them on all day.  But L would cry a lot as I mentioned earlier.  I was on constant watch mode to make sure he wasn't chewing on them.  I learned to  nurse him in different positions though!  Taking his hearing aids off and on at each nursing became a hassle because they  would get lost in couch cushions, or knocked around the room in the shuffle of pillows or blankets or little girl toys.  My stress level that first year was higher than I had ever felt in my life.  I had this everconstant list of EXTRA'S to remember!

*  rub the ac muscle so he can nurse
* keep the aids on
*don't get the aids wet
* check the batteries make sure they were working
* check the kid nonstop make sure he isn't eating the hearing aids
* don't put the aids in your pocket you will be too tired when you get home to remember them... they will get washed in the washing machine
* etc. etc. etc.


I quickly found myself feeling like superwoman but I also found myslef grieving for the time I had before.  I didn't have so many EXTRA'S with K .  I worried about that quality time.  Was she getting the attention and focus she needed.  L was on constant watch.. but what about my K girl?  When trying to confide in others my worries it became apparent that many people did not have a clue what I was experiencing.  Not even my mother.  My hearin loss was found when I was 4 and my older brother was 8.  She hadn't experienced these early days with babies and toddlers with hearing aids.  When I packed a diaper bag I had all the normal necessities, plus a container in case the aids needed to be taken out, cleaning supplies, batteries, extra covers... etc. etc. etc.

The emotions and balance of duties, and responsibilities each day could just about drive a person crazy.   My mothering experience was different than anyone else I knew.  I felt alone.



The Savior tends to know what we need and he prepares us for it.  I look back on these early days as I type and realize that he knew exactly what I needed.  He gave me a mother.  He didn't give me just one mother who had raised hard of hearing children herself and knew the pain I was going through like nobody else in my life.  He gave me 3 mothers.

My mother... she was my emotional support during those early days.  I would call and cry and cry and cry.  I would explain what so and so said and how it would make me feel.  I would drill her on how to best handle certain circumstances.  Why didn't they understand?  How could I help them to understand our situation.  My mother was the one who stuck with me for years on end.  She reassured me of my strengths.  She refocused my energy on my abilities to be a good mom.  She helped us pay for those first set of hearing aids even though I knew at the time I was a sacrafice for her. My mother, little did I know then, would be my greatest strength in raising a family with hard of hearing .  She understood my fears of how well would  L talk when he got older.  She understood my anger as I grieved some of my experiences.  She understood my strength when I went my own way instead of taking the advise of everyone else.  She was a solid rock for me to lean on.

My Step mom... she was the friend I didn't know I had!  Our friendship grew year after year.  She always reminded me of my ability to make good decisions and stand as an example for others to follow.  She knew my desires  and eternal goals more than most.  She was the rock to lean on when I needed more women than just my mom.  I needed an army of women in my life during those early years!   I alway felt strong but my strength came from these two women.

My mother in law... she was the one who thought differently and had different experiences.  She never raised a hard of hearing child and didn't understand the intimate details of our experience.  She taught me that there are different perspectives in life.  There are different ways of showing love to someone.  She taught me to take time for myslef.  She taught me to can food and grow a garden.  She taught me to be a good housekeeper.  And the things she taught me were by her example.  I am thankful that she is my mother in law.  I feel God gives you the people you need in your life.  Some because you need them for support and some because you need a different perspective and I am thankful for her.  I love all my mothers dearly.

I have a firm testimony that the trials and tribulations we go through in life, in relationships, in work and in our families will serve us to help us become exaulted beings.  I look back at my life and see blessings now where I saw road blocks then.  The saviors involvement in our life is meticulous.  It is planned and organized.  It is calculated and percise.  If we stay close to the church we have NOTHING to fear.  Even though our trials are unique to us or we feel that our trials carry EXTRA'S, the Lord will counter act those EXTRA'S with blessings in abundance.  But we must first do our part by following him!  We must not give up when we feel our lot is hard, our load in too heavy because just as we reach that point, he teaches and he blesses us.

What do you hear?

We took L to get his first hearing aids at 6 weeks old.  He was so tiny and still hadn't put on a whole lot of chunck.  He still carried that newborn look about him!  As he sat there in his car seat I couldn't help but feel helpless.

I know I know, when some people read this they will say.  "whats the big deal... aren't they just like getting glasses?"  

My response to that is.  No... they are not.  Get educated if you want to understand what reallly goes on for those with hearing loss. 

Hearing aids change the way the brain has always heard sounds... or lack of.  When you put them on the brain does not know how to handle all that noise.  It goes into overdrive to compensate, filter and block out noises it doesn't know where to file it away or weather to alert the brain to thoses new noises so it sends everything as important!!!!

For those with normal hearing levels lets imagine sitting in a restaurant having a conversation with a friend.  You chat casually, you may notice a loud family next  you with kids.. you might even feel a bit annoyed that their volume is at a level that you are not comfortable with.   I say (you are not comfortable)  because it bothers or comes to attention to you.  But you do your best to focus on your friend and it becomes tolerable.  

Your brain will filter that louder noise into a file away from those things you are focusing on.  It  "filters the background noise."  And you are able to go about your business untill.... this families child drops something.   Then you notice the sounds are louder, and it has caught your attention.  Maybe it was a glass cup or silverware etc.Whatever it was  your brain had a threshold and alerted you to a louder noise.  It brought a response.  Maybe loud enough to startle you?

L got his hearing aids put on that day and was startled a lot.   He even cried several times.  When we put his hearing aids in he started hearing noises he had never heard his brain didn't know how to respond.  

He would easily startle when doors were shut, when his sister laughed out loud hard.. when the vacuum would turn on.  He would cry insessantly in the car.  I remember his car rides would normally take 20-30 minutes and it would take me more than an hour because he would be so upset I would think he would choke or pass out in his car seat so I would have to stop and console him.

L cried so much I thought something was wrong.   I had my associates degree and knew a little more about medical things than some my age.  I knew about reflux and hernias.  I had him checked we tried reflux meds.  Nothing helped.  He would start crying from about 4 in the evening until he would fall asleep after 10 or eleven.   If there was something anyone did to console their baby... I had tried it!!  I did the dietary changes for colic.  I did the hernia and  reflux appointments with the Dr.  I did baths, massage therapy, we did car rides and swings, we did rice packs and tummy sleeping.  Yes I put him to sleep on his stomace even with all the SIDS info.  I didn't sleep because he didn't sleep.  And I worried a lot.  I read a lot.  I listened to a lot of people and  I asked for a lot of advise.  

He didn't grow out of this crying stage until he was about 11 months old.  It slowly got better.  But I didn't go anywhere out of fear of his crying episodes.

Even with all of this going on I never knew if the hearing aids were at the right volume... where they adjusted too loud.  Was this causing him to startle and be scared.  Were his ears hurting because of the noise?  Was it too loud?  I would take his hearing aids out just to test it when we drove in the car and found out that it wasn't the hearing aids... he would still cry.  Finding a balance between when his brain was on overload or weather it was food, gastric, or comfort related was an ever constant war within my mommy abilities.  

I remember sitting in a rocking chair at my in laws house while he cried and cried and cried.  Everyone went about their regular routeine.  They hung out in the other room chatting and having fun and I sat with a crying baby.  I remember begging my husband to take him because I was so overdone I didn't want to break.  I didn't want to loose my control as a mother.   

Back to my story about the restaurant.  When hearing aids are placed on a hard of hearing person it becomes overload.  That feeling of startle when you  look to see what the child next  your table dropped.  Or what the loud noise was coming from.  That is the mindset of those with hearing loss for a large majority of the time they are wearing hearing aid devices.  Their mind is on constant vigilance.  Focusing to figure what noises need to be filtered.  The thing is.. it can't filter the  way a normal hearing person can.  A hard of hearing persons brain will not be able to cope instantly like eyes adjust to glasses.  Their brain will do as it was trained to do.  It will startle their nervous system.  It will allert them to every "new" and unreconized noise. 

A hard of hearing person will constantly be redirected or their attention will be brought to noises that a regular hearing person doesn't even recognize they are hearing.  If you ask a hearing individual if they can hear the wind blowing outside the window they will be able to "recall" this experience and say yes.  For those with Hearing loss... they will most likely stop what they are doing to find the source of the new noise.  It is not something their brain can file away.  They have little power to filter their background noise.  

For hard of hearing people.. Putting hearing aids on is like turning up the volume to the tv just loud enough you want to turn it down.  Just loud enough it causes a neurological or emotional response within the body... At the same time carrying a conversation with that one friend who's voice is just out of your ablilty  hear everything they are saying... not to mention a major storm might be going on outside.  And .... to add to all this... you have to carry another conversation with a person on the phone.

For hard of hearing people... their brain is playing a puzzle game all day long.  It is taking what it hears and then trying to fill in the blanks for what it isn't.  It becomes tiring, it becomes frustrating.  There are many articles that talk about mental health for the hard of hearing individuals and I am a big  advocate for mental health.  When I put my hearing aids on I have to spend some time adjusting to them in the morning.  If my children are having a rough morning, it can be aggrivating because the volume sets my nervous system on edge.  The noises are outside my comfort zone.  I will hear the heater or  AC turn on in my house.   I might hear the sound of the brush going through my hair, the water running in the sink..I often find myself looking for sources of noise while I am driving.  I often think there is something wrong with my car because it has a new sound. 

I made a list of things I do not hear on a regular basis without my hearing aids.

Running water in the sink, or bathrooms ( this has sometimes been a disaster.)

The wind

The birds

Rain, Hale or windy stormes outside

I don't hear bugs, grass hoppers or crickets

I don't hear cars until they are within a cars distance away from me.

I don't hear people who are out of my eyesight if they are speaking to me at 5 feet or more away.

I don't hear clothing as it rubs together

I don't hear the noise my blinker makes when I'm in my car

I don't hear the chime when you leave the ignition on but the car is not running

I don't hear the tires on the pavement going through the neighborhood

I don't hear cell phone noises or many noises for that matter outside of the same room I am in.

I don't hear door bells

I don't hear the little noises my kids made as babies unless I was holding them or had them close to me.

I didn't hear them breathing as babies unless I had my hearing aids on..

I don't hear the click of light switches

Or the noise your toothbrush makes. 

I am often distracted by noise because there are things I didn't realizea even made noise...Like static in the laundry.  I always felt it or saw it but never heard it.

I never knew how loud the toys were my children own.

I don't hear the trains at night that go past our neighborhood

I don't hear the t.v. at normal levels.

I don't hear people when their backs are turned or they are in another room.

I can't hear my children in the night when they call for me.  This has been a hard one.  But we cope!  Jason has become my ears at times and I help him to see details he doesn't notice!

Sedation and hearing test

L was 4 weeks old when we did the sleeping hearing test.  In those four weeks.  We realized this little guy was a thousand times more sensitive to life than our other child.  Or any of my friends kids.  He cried NON STOP.  He cried for hours at night.   I carried a lot of anxiety in those days.   Worrying about getting to appointments with a newborn and a 2 year old.  Planning, preaparing and packing before we went anywhere.

The amount of time it takes mothers with newborns to get out of the house is something of a miracle if you ask me.  You shower, nurse, meet needs of your other children.  Change clothes because you are thrown up on... get lunch because by then everone is hungry.. etc, etc, etc.  We all know the drill. Once you ARE ready to go out the door someone poops or throws up.  Colic is an easy way to teach patience.  ( I lack patience in every letter of the word!)

My daughter stayed with family... because I have the worlds best family.

I get to the hospital and L is starving.  He had to be somewhat fasting or at least hungry when we got there so they could slip him an oral sedative med that would help him sleep and hold still for the test.  

Have you ever declined to feed a newborn?   Oh heaven have mercy!  My  heart was cracking and my nerves were on overdrive.  Not to mention I had soaked my nursing pads well beyond their compassity by the time we got through our 30 minute drive.  (Which he cried in the entire way!)  I was wearing his dinner on the front of my clothes.  (Social humility.)  I would do it again in a heart beat!

Once asleep our dr.  whom we will call Jensen.  Jensen hooked up the electrodes across L head and put baby earplugs into his ears that were attached to wires going into a machine.  Small babies and wires and machines.  Everyone who's anyone knows someone who's experienced that!  I waited patiently.

As i waited  I couldn't help but recall the memories of my childhood.  I was the gir with the hearing aids.   Hearing aids in the 80's were very much frowned upon by childhood peers.  I had a lot of friends.  I didn't get verbally bullied much.  Yes it happened but not much.  It was the exclusion that I felt the most of.  People who would turn the other way, shy away from talking to me.  Kids who would stare at the goliath like devices protruding form my ears.  For elderly people we call that ear hair.. but for me...?    I always missed out on jokes.  I was the one not laughing.  I was the one who missed a tone and didn't hear how funny a comment was so I wasn't smiling.  I was always staring trying to read lips.  Trying to catch up.  In my brain every other word was missing sounds and I was constantly playing puzzles with the info I heard and trying to make sense or guess on the things I didn't hear.  

What would life be like for my boy?  For my sweet husband and I. Or his sister for that matter?  Would this test say he was deaf?  We knew that wasn't the case.  We had clapped while he was sleeping.. wispered in his ear and always got a response.  But there were times he should have responded and he didn't.  What would the severity of this test tell us?

It would tell us our future.

I waited patiently.  Somewhere within me a beast was awakened during these early weeks of diagnosis.  I became an advocate.  I became a protector.  I became an  expert on as much info as I could lay my hands on.  I became bold and strong and steadfast.  But deep within everyone has fears and those fears are sometimes what others feed off of.  Our strength to stand up can be intimidating.   I was embarking on an experience nobody withing my family, or extended family would ever understand.  EXCEPT for my mother.  She understood.  She held my heart together.  She raised two children with hearing loss and she held me together in those early weeks.  She has always held me together.  I felt like a glass globe.  Hard and unruffled on the outside, but see through and vulnerable on the inside.

The test was finished and Jensen talked to us.  We found out that his hearing loss was moderate and we would get more specific detail as he grew older and was able to respond to tests better.  We then ordered our first set of hearing aids for our 4 week old boy.

We went home and we processed our new path, our new reality.  We grieved as one would grieve the death of a loved one. But our grieving has never stopped.  Having a disability has a large impact on an individual emotionally.



I look back now as I write about our little family.  I wonder.. What got us through those early days and years?  I know the main source of strength came from  my beliefs.  We believe in the Church Of Jesus Christ of Latter Day Saints.  We know our lives will be filled with trials but we are also taught how to deal with adversity.  Having gone through some hard times as a kid myself I believe I was better prepared for the trials I was experiencing and had yet to experience!

Having a firm foundation of principles to live by and a TRUE belief system with a support group are key to success in life.  Some believe money, social status, job status, or simply looks are where they may find their footing.  But as I have gotten older I have seen cycles in life.  Not any ONE particular person but a cycle of principles.  When lifes foundation is center around Christ and the Atonement, happiness can be found in the most unimaginable circumstances.  

Many people wonder "how do they do it"  as they look upon another person and their circumstances.  Some are forced to cope, some are taught to cope, and some are just surviving day to day.   The early days of dealing with a child with hearing loss were a blend of coping skills.    I owe all the success in raising my children and for the current state of my life to my Savior.  It was because of him that we didnt give up!  It is because of him that our marriage has become stronger over the years.  It is because of the Atonement I have been able to turn the other cheek time and time again.  It is because of his Atonement that I am able to face myslef with a smile in the mornings  and put all my energy and heart into each day !  Raising strong children who are well rounded with a firm foundation.  That is my hearts desire!

A change in plans

 March 2005

Jason and I were living in Preston Idaho while he worked at a local plant. He was making 13.00 an hour and we thought we were doing great to be holding it all together.  I was a stay at home mom to our 2 1/2 year old daughter K.  She kept me busy coloring, playing dolls, we cooked, we cleaned, and she was the little mini me around the house.  She has a  zest for life, a spunk and hard headed "I will do it myself"  Personality!  She would fall asleep every morning watching Winnie the Pooh.  We were on WIC assistance and Jason helped his dad at the farm every night after work where we earned an additional 200 a month.  It was hard to realize it was only a little over a dollar an hour, but he was happy spending time with his dad and our needs were being met.

I was pregnant with our second child who we knew was a boy.  Apon finding out he was a boy I had my own confirmation and spiritual experience that "everything would be all right."  During this pregnancy I had feelings of uncertainty.   Glimpses of something coming.  He would not move a lot in utero and he didn't respond with the zest and flare that my daughter did.  She was an acrobat within for the entire 9 months.  This little guy was oh so calm, peaceful and just there.  I wondered at times if something was wrong.  I remember asking my husband if he felt something was different but how could he.. I was the one pregnant.

Our family is active in The Church of Jesus Christ of Latter Day Saints.   We believe in modern day revelation, prophets, and personal revelation.   The experiences I was having I felt were that of personal revelations.  They scared me.  But there was this overwhelming feeling of peace at the same time.  When I had found out that I was pregnant months before.  I was laying on my bed taking some time to myself reading and contemplating life.  I knew I was pregnant before the pregnancy test was even possible.  While I was resting I had what some would call a day dream.  I saw an old lady in a mid calf dress,  It was something you would see in the early 1900's or so I imagined.  She was mid heigth and had short hair that was aged.  Her face was clear as day.. But what I noticed was her clothing and her actions.  I imagined her standing in  the doorway of my room and she had on a white apron that was smooth and tied around her waist.  It fraimed the skirt perfectly and she was wiping her glasses with this apron.  And I had the impression that she told me.   "Everything is going to be ok. Don't you worry."   And that was the end of my experience.   It hit me so hard, so deep within that I told my husband about it.

A few days or weeks later I was with my mother looking through old family photo's and in her book was this old lady.  The picture jumped out at me in my mind so much so that it startled me.  I stopped my mom quickly and said "Who's that?"  And she said that it was her moms, mom.  Grandma Lettie.  I told her of my experience and she went to her room and pulled out these old glasses.  They were the exact glasses I had seen weeks before.  And that is when I knew that I was going to experience something within my little family.  Not just me, Not just this baby but all of us.  My little girl would be just as much a part of this experience as the rest of us.

The day I was due to have him I was scheduled for induction.   My body didn't go into labor with my first child.  She cooked for 42 weeks!  This little boy was scheduled a day after my due date.  We arived and were placed in a delivery room.  The normal procedures are being set up, my Pitocin and other necessities.  With my daughter I was 30 hours in and with this little guy he was only 4 hours from the time my water broke to the time he arrived!

He wasn't a screamer like his big sister.  She came into the world and wanted everyone to know what she had just been through!  He came into the world, peed on the dr, and then just looked around a lot.  He squeeked and cried a little bit but nothing like his sister her lung compasity!  He looked healthy.  The delivery was so easy I told my husband "I could go through that again tomorrow.  What a difference in deliveries."

Oh he was handsome he had surfer dude hair.  His tips were blond and his roots were darker!  He lit up the faces of all the nurses and they would hold him up to show the Dr's who would walk past the nursery.

As always, we got the results of the hearing test and the nurse casually said, "He didn't pass his hearing test but no worries.. he could have fluid in his ears so come back in 2 weeks and we will check again!"  I went home with the realization that I may have passed on a nasty gene.  I felt guilt, I felt fear, and I felt the answer to all those uneasy and off feelings during pregnancy were all a part of this.

At home our family and friends would come and go as they visited us with our newborn baby.  Some would be suportive and ask questions and give encouragement.  Some would validate our feelings.  Some would put us down for our fears , or so if felt. I like to think it was their of encouraging us.    And some didn't even show up at all.

Our little family, our marriage in it's early stages... how could we keep it all together with this new information?  Those were nervous, and soul searching weeks.  I remember praying a lot.  Not quite ready to cry because it wasn't for sure.  I wasn't entitled to grieve just yet... but I felt it.. I felt I was expected to carry on as normal and not mention it because it was probably just fluid.. but I feared it.  I was his mother, I had my mothers instincts... I KNEW.

Two weeks later we showed  up again to the hospital. This time the nurse had a pale and timid look as she told us he didn't pass again and was refering us to the Logan Audiologist.