Tag: sensorineural hearing loss

Adoption, Medical Issues

Turning the Page of a Book to a New Chapter

Barefoot Faith Journey

Turning the Page of a Book to a New Chapter

Turning the Page of a Book to a New Chapter

Ethiopian Adoption

My baby came to us when he was 5 yrs old, after a long, intense battle to bring him to America. Being a child of color, more aged, and a boy, his odds were against him ever getting adopted. See, little black girls turn into sweet gorgeous black women. Little black boys turn out to be thugs, murderers, etc. There is a sad stigma, and that does not mean it is just in America. There is racism in the country of Ethiopia as well. Suppose a male child is three or younger and “caramel” in color. He is an excellent child to be adopted. If a male child is four or above and darker, that is a lot of odds.

How can one look at that face, those eyes, that smile and say he is going to be ANYTHING but a child of the King and a warrior for His kingdom? This baby, this baby, I cannot even. My heart bursts with love, pride, gratitude, and thankfulness for what the Lord did in our story. I seriously cannot even.

Discovering He Was Deaf

We did not know he was deaf for almost a year, LOL. He was learning the language and how to live in a family and acclimate to the USA. That was his only job. To learn to be loved, to know he is safe, to help him with his loss and grief of not being with his family and beautiful country. He was, at one point, trilingual. Oh, and he was LOUD. He could speak and worked hard at his broken English until he mastered it. After almost 6 yrs, he still says a few words wonky, LOL.

“I No Hear In That Ear.”

On his birthday, my mom calls to sing to all the kids. She always calls in the morning. I answered the phone, and I knew it was her, so I went ahead and called him upstairs and handed him the phone. Now, remember, he is an Ethiopian who had only been home for eight mths. I put the phone up to his right ear so he could listen to her sing. When I did, he said, “mommy…I no hear in that ear.” I laughed and said he was a funny boy, and I raised the phone to his right ear again. He said, “Mommy, I no hear in that ear.”

Understandably, he switched ears and smiled as she sang. He is a man of little words, so as he was grinning (he thought she could see his approval), he handed me the phone. I was sitting there, with my mouth opening, looking at him like he had an eyeball that had just sprouted up on his forehead. I held the phone and could hear my mom speak, but all I could say was, “what do you mean you can’t hear in that ear?” He said, “I no hear in that ear.” I could’ve caught flies with my mouth.

I’m Sorry, But What???!!

I put the phone to my ear and said, “Martha….he says he can’t hear out his right ear…I gotta go and figure out what the heck he is talking about.” We got off the phone, and I looked him square and said: “WHAT THE HECK DO YOU MEAN YOU CAN’T HEAR OUT OF THAT EAR?” He took his hands and clapped them on my cheeks. J pulled my face, nose to nose with his face, and said: “MOM, I NO HEAR OUT OF THAT EAR.” I asked if he heard out of that ear in Ethiopia. He waved his hand like it was nothing, saying, “No. I no hear in that ear in Ethiopia (that is how he pronounced it).”

Bumfuzzled

I think I sat there staring at him for 30 minutes. I’d plug one ear and talk. He could hear me. I would plug the other ear and talk. He could hear me. I did not get it. At all. I turned all the fans on, made him turn around, and whispered. He heard me. I am stumped. In a last-ditch effort to understand what was happening, I got in the van with him, turned up the radio, lowered all the windows, and whispered. Guess what? He heard me. Either he was insane, or I was insane.

ENT Part 1

I took him to an ENT. We did hearing tests. He was in the “soundproof” booth, and the lady said some words, and he repeated them while one or the other ear was plugged. He did it. She said he was fine. In another moment, “I am such a bad parent because if he is hard of hearing in that ear, I didn’t know. Also, I didn’t do anything about his inability to hear. The audiologist said he was fine, but I want a second opinion from a friend. She is good at what she does and she is free. I will leave this alone. If she tells me that he is fine, I will assume I am nuts. Also, I will assume he is nuts. We are all just nuts.” Yes, that is the long run-on sentence in my head.

ENT Part 2

I headed to see my friend Susan Brown. She did her initial stuff and then put him back in the booth. I sat in the booth with her. This time was different. She said things, but she covered her mouth. When she did that, we discovered that he was stone-cold deaf in his right ear. I didn’t realize that he was reading my lip and everyone else’s lips. Most people are deaf from either their outer ear to their eardrum OR from the eardrum to their brain. J is deaf from the external eardrum to the brain. He has all the mechanics of a “good” ear….he is just deaf. We are guessing he was born this way, which explains SO much.

ENT Part 3

J was pretty stoked when I took him from Susan to the NEW ENT. I told him we were going to see Dr. Jones. With his wide eyes, he said: “We are going to see DR JONES?” I said yes, we are. He is going to check your ears. I asked why he was looking at me like that, and he said, “Dr. Jones? As in Indiana Jones?” I smiled and said, “No, Dr. Shawn Jones.” Let down.

Stupid Question

As we talked, I asked Dr. Jones if this could be hereditary? He said it could be, and why do I ask. I explained to him that my mom was born without a bone in her ear and that she was deaf. I told him that she had surgery, and they placed a metal plate there; now she can hear. At that moment, the dr was staring at me, the nurse was staring at me, and J was silent. I couldn’t figure out the silence.

Dr. Jones leaned WAY into me and said: “Brandi, is your mom black?” I said, “No. She is a little short redhead. Why are you asking me if she is black?” He smiled and said, “Brandi….your son is black.” Duh, I forgot. I don’t think about things like that, so I felt pretty stupid. After many visits, many types of hearing aids that did not work, and learning some sign language to help him in crowds, five years later, yesterday was the day we turned the page to a new chapter five years later.

ENT Part 4: Surgeon

We were in Louisville for Dr. Severtson to perform a BAHA surgery yesterday. Usually, this surgery would have a titanium screw, and in about six mths or so, once it is healed, you snap a hearing aid on behind your ear. The sound bypasses the ear canal and goes straight to the brain. The post requires A LOT of attention and maintenance. We were going to do that because the older J gets, the more it bothers him about his hearing. I get that. Our dr was recently approved to do a new type of BAHA hearing aid.

Instead of the titanium screw, he put in a magnet. This takes 2-3 mths to settle in and heal. Once that is healed, we go back to the processor. His hearing aid will also have a magnetic on it, and it will just stick to his head, behind his ear, and it does the same as the original. This is good because there is zero maintenance. You get your processor quicker. He is the first in our area to receive it, so we can hopefully help other families. More importantly, he will be able to hear out of both ears for the first time in his life. How freaking cool is that?

Recovery

The recovery is not fun. He has to keep his head wrapped for three days. Also, J cannot wash his hair for a week or so. In the end, it will be awesome, and that is what I have to remind him. I am so stinking excited. He is excited too, but he is hurting pretty good, and his incision site itches. Which is driving him bonkers. All in all, welcome to his new and improved HEARING story 🙂

 

Medical Issues, Opsoclonus Myoclonus Syndrome

Part 3 Welcome Home

Barefoot Faith Journey

Part 3 Welcome Home

 

Part 3 Welcome Home. My flesh screams, hanging onto my airplane seat’s armrests. I refuse to move. This is my anniversary. This is our planned TRIP. We are not moving. I do not want to stay. I would live in France if I had to, but guess what? I don’t have to. We are traveling, that’s it. No more, no less. I sit there, stunned. Unable to move or comprehend what I’m about to see/smell/witness in this country, I have never planned to go to Holland.

What I Envision Versus Reality

The plane’s door opened, and we grabbed our luggage. This was the luggage that was packed for a France trip. We got off the plane. My first thought is the drabness of the airport—the busyness of it. I felt like I needed to wash my hands because so many people were touching me. They were all speaking in different languages. I watched their mouths move, trying to read lips or get a nugget of information, but I couldn’t. I couldn’t understand any person or sign. There was also not a single person who spoke English. I felt trapped in this foreign country. There was nowhere, no one to guide me, no vehicle, no home, no food, nothing.

Overstimulated Moment

I picture us grabbing our stuff and trying to find our way out of that blasted, loud, big, busy airport. There was a moment when I needed air. Sadly, I was overstimulated by the news and anxious because this was entirely out of our control. Air, I needed to breathe fresh air and take a moment to regroup. I was thrown into something that was not of my doing. There were two choices: I could curl up in a ball and sob or find a way through the fear and uncertainty.

Ray of Sunshine

As I processed this news, I felt a ray of sunshine hit my face. I felt a cool breeze as we walked outside. In one moment, I opened my eyes, and from as far as the east was from the west, there were tulips. I love tulips. Honestly, I love their beauty, the array of colors, and the smells. Tulips come up every single year without fail. Far off, in the distance, I saw windmills. The most gorgeous background I have ever seen in my life.

Absorbing my Surroundings

As we walk around, absorbing our surroundings, we think about Paris and what we will miss. The art, the food, the atmosphere, all of our plans, all the cool things we would see, yet we had to mourn that because we knew we were “stuck” in Holland. Don’t get me wrong; Holland is phenomenally gorgeous. It is just where I wanted to be. I don’t mind a visit, but why must we live there. We had to mourn not seeing our family, our home, American food, and the freedoms we had in America. There was just a lot to process.

Once our mourning was over, we settled into this new life, this new place with all these new sites, foods, noises, and smells. We began to acclimate to our surroundings, and we began to learn about the cultures and the foods.

Holland and Its Beauty

Holland has its beauty, but it was not what we had initially planned. We had to learn to adapt and compensate for what we wanted to see in Paris and what we wanted from home. It wasn’t bad, just different. It was a change, and I’m not one to like change.

I had to learn that I could not “fix” my children…only God could and will do that. I had to learn to let go of control and begin to love what is. By mourning the loss of what was going to be a 10-day vacation to Paris, I was losing out on what was surrounding me.

Seeing Things from a Different Perspective

With new colors, new foods, and new scenery, I began to love my new home, and I began to change by loving it. Ironically, I began seeking God more and seeking help for my depression. Also, I learned that FASD, RAD, Single-Sided Deafness, and Opsoclonus Myoclonus Syndrome do not define my children. Finally, I learned how to love again and my God, my husband, and my children for who they were, not what I “envisioned” them.

Be open to change. Be open to new things. Stop trying to fix things. Stop trying to control what you are not meant to control.

Live life and love without abandon.

 

 

Medical Issues, Opsoclonus Myoclonus Syndrome

Part 2 Uhm NO

Barefoot Faith Journey

Part 2 Uhm NO

 

Part 2 Uhm NO

Uhm, WHAT??????!!!!!!!!!!!! Holland? Uhm, no. No, thank you. I know nothing, and I do not have an itinerary. Sadly, I do not have a place to stay. I don’t know where to eat. I know nothing. NOTHING. I can picture myself asking the stewardess if this is a layover. How long it will be before we arrive in PARIS, FRANCE. Then, she says that this is our destination.

Our ticket is one way, and they will add our children/pets onto the plane for the trip. This is where we will live out our days until the Lord sees fit to move us somewhere else. I had planned on staying in France for ten days, not my life. I certainly did not plan on LIVING in Holland, and what the heck do you mean you will bring our kids during the flight?????????

When we started creating our family, we had definite plans.

Big Daddy wanted one child, and I wanted 4. We compromised on 3. Our oldest was high-strung, motivated, and determined. She is also super sensitive to bright lights and noises and does not care for many people. Our second was a pistol. She was creative, loved animals, and told you like it was regardless of if it was appropriate or not. She has a bit of a lazy streak and wants things done for her more times than not. Our third, our only biological son, was an easy baby until he wasn’t.

N’s Journey

He was the first to crawl. He babbled, talked, loved eating, and then he had his 12 mths shots, and his life changed. Maybe that was when we were “packing” to go to Italy. It was like shades pulled down over his eyes. He stopped talking, threw lots of fights, and had sensory issues. It was tough. Our life was now full of speech therapy, occupational therapy, and physical therapy. It was hard. The Lord guided us and helped us and allowed me to have a great deal of soaked in knowledge. Today, you would never know anything was ever wrong.

So with V, we started planning the trip. A, we started saving for the trip. Then, with N, we got on that plane and headed to Paris, France, to see all the things we could see on a 10-day trip.

Then there was God.

As we were flying, God saw fit to allow two more kids to join our crew. These kids were older than came from severe trauma physically, mentally, and emotionally and among other trauma, He thought it’d be a good idea to have Big Daddy and me raise them. It was almost like He threw me into the lion’s den as he did with D. I was unprepared. Realistically, I could love the FASD (Fetal Alcohol Spectrum Disorder), RAD (Reactive Attachment Disorder, Behavioral Issues, Dyslexia, Developmental Delays, Food gorging/hoarding/stealing out of them. Sadly, I wanted to fix them. Plain and simple.

While I was “trying” to “fix them, “…..God showed up again.

This time, it was a brief detour, on our flight, to Ethiopia. The trip there was ROUGH. It was full of turbulence and engine problems. We thought and were told we would not make it, but GOD had other plans. We made it. Instead of a 24 hr flight, it would take us 15 mths to get from where we were (on a plane headed on vacation to Paris) to Ethiopia because He wanted us to add to our dysfunctional crew. He was another older child, and he had a malnutrition brain and some behavioral issues; and we came to find out that he was deaf in one ear. He was not a little bit hearing impaired but deaf. Again, I could fix this. I could continue raising all these kids while “fixing” their issues and problems. I was content, tired, and overwhelmed but content.

But then, there was God again.

There have been tears from our first child to our sixth child. I was sitting on that plane, wishing to be at our destination so I could have some respite and time to breathe. God decided to be my breath and to live for me. He did this in the form of our seventh child, our Okapi.

I thought the stress of trying to fix my FASD, RAD, ADHD, PTSD, Dyslexia, Learning Disabilities, Deafness, Autistic tendencies, and Opsoclonus Myoclonus Syndrome was going to bring me to my knees. Oh, heck no, this little dude came into my life and turned it upside down. He has taught me so much and given me such joy, but he also went from an ordinary little boy to a medically fragile kid in about 4 hrs. Please hear me say. I would not change a thing with this little guy. He brings us joy and happiness even amid uncertainty with his health.

Part 3: Welcome Home.

 

Medical Issues, Opsoclonus Myoclonus Syndrome

Part 1 Heading to Paris or Are We

Barefoot Faith Journey

Part 1 Heading to Paris or Are We

Part 1 Heading to Paris or Are We

Part 1 Heading to Paris or Are We? Let’s all take a moment and soak in the beauty of David. Michelangelo was a master of his craft. God created this man and honed his craft to leave people like me breathless. I love art and always have had a great love of art. I enjoy expressing myself and my emotions through painting, sketching, and doodling. My dream is to go to the Louvre in Paris. I want to absorb it all. I don’t want a guide. I don’t want to be in a group. I like the freedom to walk, stand, admire, and ingest all the glory of all my favorite artists. It is a dream. To see this in person and the Headless Angel, oh and to see the Mona Lisa. Oh. My. Word. Can you even imagine?

25th Anniversary Trip

The GLORY of this is that I’m going to go!!!!! Next year, Big Daddy and I will be married for 25 years. God willing, our trip to celebrate will be in Europe. Big Daddy does not care for museums or art, but I could and probably will spend an entire day there. I want to revel in the beauty of these timeless pieces.

When we go on vacation, I spend MONTHS researching. I will find places that we both want to go to while there. There will be a time when I research all the restaurants and incredible attractions and prep (financially) for any things that require money. I will have a complete itinerary. When we went on our 20th anniversary, I had eight pages of places, addresses, phone numbers, and websites to go to Niagara Falls! Planning is fun for me. I am SO excited. Niagara Falls is on my bucket list. This is a dream. Bart and I live in the US. We have visited Canada, Mexico, and Africa. We still have a few more continents to go before I am content 🙂

Flying Away to Paris

Now, I can imagine being on that plane (I love to fly) and jetting off into the sunset. My kids and pets are all well taken care of at home. I have my fella, and we are off! There is a moment when I’m so excited that I can’t even stand it. I can imagine being even more excited than when I went to Africa cue heartstrings cause I love Ethiopia. As we travel, we eat, sleep, watch tv, read, and use the bathroom on this plane. It is our home for however many hours we are on it, and we will revel in this little getaway.

My Version of Welcome to Holland

When I read this poem, it reminded me of our trip that we ARE planning for next year. My mind began to wander, which is the scenario I imagined.

We get the overhead notification that we are preparing to descend. Finally, we are there. We have made it. We have arrived. We start to land, and the plane screeches down the runway to make a stop. We hear, “WELCOME TO HOLLAND.”

Part 2: Uhm, NO!

Medical Issues, Opsoclonus Myoclonus Syndrome

Welcome to Holland

Barefoot Faith Journey

Welcome to Holland

Welcome to Holland is a poem that I have always loved.  It is a different way to look at things when life does not go as planned.  There are 4 of my 7 children who have special needs.  We have dealt with Dyslexia, learning disabilities, Fetal Alcohol Syndrome, Reactive Attachment Disorder, Sensorineural Hearing Loss, Generalized Epilepsy, Functional Neurological Disorder, and Opsoclonus Myoclonus Syndrome.

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this:

Planning a Trip to Italy

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

Discovering You are in Holland

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine, and disease. It’s just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

c1987 by Emily Perl Kingsley. All rights reserved.

 

Medical Issues

Sensorineural Hearing Loss

Barefoot Faith Journey

Sensorineural Hearing LossSensorineural Hearing Loss

Sensorineural Hearing Loss.  On Little Man’s 7th birthday, we had a HUGE surprise in our lives.  Our day started out as a normal birthday.  At the crack of dawn, the phone rings and it is my mom. She is calling to sing to the birthday child.  This morning was no different.  As soon as the phone rings, I hear the birthday kid running 90 to nothing up the stairs to get to the phone.  They look forward to the early morning call.

As the phone rang and Little Man burst through the door, I handed Little Man the phone.  I automatically put it to his right ear because that is which ear that everyone uses to hear the person on the other end of the line.

Little Man looked at me and this is the conversation that ensued:

LM:  “I no hear in that ear.”

Me:  slightly confused, still groggy because I had just woken up “I’m sorry….what?”

LM:  “I no hear in that ear.” Bear in mind, I am still holding the phone

Me:  “I don’t understand.  What do you mean you no hear in that ear”

LM:  gets in my face and grabs my cheeks and raises his voice “MOMMY…I NO HEAR IN THAT EAR.”

Me:  “Did you hear in that ear in Ethiopia?”

LM:  “I no never hear in that ear.”

Little Man Doesn’t Miss a Beat

Little Man grabs the phone and my mother proceeds to sing.  I sit in my bed, confused.  I talk to my mom and let her know what she said and she said that I should probably go and see if this child has an ear infection.  Little Man has a HIGH threshold for pain, so this child not telling me that his ears hurt is really not that shocking.

We go and his ears are fine.

I make an appointment with the local health department to get an initial screening.  They said that Little Man seems to have some loss, go and get it checked further into but not to be too concerned.

I call and get an appointment with Murray State’s hearing clinic. I’ve worked with Susan Brown over the course of a few years, so we are familiar with each other and she is super good at what she does.

We get there and get the test done.  She just smiles and says I need to go and see an audiologist.  She said that Little Man is deaf in his right ear.

I just sit there with, I’m guessing, a puzzled look on my face.

SB:  This child is deaf in his right ear and is borderline normal in his left…but still normal.

Me:  I don’t understand.

SB:  Little Man.  Is.  Deaf.  In.  His. Right.  Ear.  And.  Little Man.  Is.  Borderline.  Normal.  In.  His.  Left.  But.  Still.  Normal.

I must have looked like a bus hit me

Me:  Define deaf.

SB:  Sonic bomb….Little Man can’t hear that.

Me:  So that’s bad, right?

SB:  yes, but this child is still “normal” in his left ear.

Me:  Is this hereditary?  My mom was born with a bone missing in her left ear and she had to have surgery to have a plate put in when she was in her 30s maybe.  Could this be the same thing?

SB:  total look of confusion on her face  Uhm, is your mom black?

Me:  Uhm, no..she is a fiery redhead.

SB:  Then how could this be hereditary?  Your son is from Africa, right?

Me:  Yes Little Man is…I don’t understand what you are asking…..then the light pops on in my head….oooooh…..gotcha.  Not hereditary..right, this child is adopted.

SB:  I thought I was missing something

Dr. Shawn Jones…Not…Indiana Jones

So, we make ANOTHER appointment with Dr. Jones.  Little Man is THRILLED that we are seeing “Dr. Jones.”  We walk in and Little Man says “You, Dr. Jones?”  Dr. Jones replies with a yes…..Little Man looks confused and Little Man said “Indiana Jones?”  Dr. J says “No, Shawn Jones.”

Burst his little bubble.

All in all, the tests were the same.  Little Man has no hearing, at all, in his right ear.  This was probably either from birth or from some illness in ET.  We tried a normal hearing aid in that ear and it did nothing.  It is hard to amplify a sound that is simply not there.  So now, we do a CROS hearing aid.  It is a regular aid in the good ear and a microphone (smaller) aids in the bad ear.  The sound hits the small aid and Bluetooth to the good ear and it is amplified.  Little Man still cannot localize sound, but this child can “hear” when something is coming.  It has worked really well for Little Man.

What Works

I do not make Little Man wear it daily, but Little Man is wearing it more times than not.  It is hard because this child isn’t supposed to “sweat” or get it wet, so we have to be very cautious.  The little aid, because it is not fitted into his ear, has a tendency to fall out, so we have gotten Little Man fitted for a fitted aid in both ears.  They are neon in color because that’s how we roll.