Guest Blogger, Medical Issues

Feeding Tube Awareness Day

Feeding Tube Awareness Day

Feeding Tube Awareness Day
Photo by Tara Winstead on

Today is National Feeding Tube Day, which is a special day for many people. Many individuals require a feeding tube to get the daily nutrients to keep them alive and thriving. My son had to have a feeding tube for the first month of his life. He was born prematurely at 34 weeks and one day via emergency c-section due to eclampsia. He was born weighing 4 lbs. and 11 oz and 18 ½ inches long. I could not see or hold my son for three days after he was delivered on April the 8th of, 2022. My husband took pictures for me.  He showed me how beautiful he was so I would not miss anything important about his health or growth. Seeing the first photo of my baby with that feeding tube in his mouth broke my heart. 

What Does This Mean for His Future

Not because of its purpose but because I knew what that meant for him in the future. The tube was moved to his nose because he tried to pull it out continuously. They also had to tape the slack of the tube to his cheek with medical tape so that he would not pull it out to where the nurses would have to reinsert the tube. He was given donor breastmilk and medicine through his tube to help him gain weight so his NICU stay would not be extended for a long period.

Trying to Breastfeed

I was able to try and breastfeed him while the tube was in his nose, but all the wires made things a bit difficult. I had to turn to pumping my breastmilk. Then placing it in sterilized bottles or syringes. Next labeling them and what time they were finished. Lastly, handing them off to the nurses for them to add to his nightly feeds in his main tube. He got some of my breast milk and was supplemented with donor milk until my mature milk came in. One time during his NICU stay, he had pulled his tube out, and the nurses had to switch nostrils and replace the tubing with a brand new one, along with adding the tape to his other cheek again. The nurses said he did not care about this experience and was in pain during the transition.

Feeding Tubes (NG and G Tubes)

Feeding tubes (NG and G tubes) are inserted through the nose or mouth, and they must keep pushing it through until it reaches the abdominal wall leading to the stomach. The procedure itself is painful, and it is painful to watch a loved one, especially a preemie infant, go through all that pain and discomfort. They do not know what is happening or why it is being inserted multiple times. He tried to claw at it while we held him, and it broke my heart to see him in pain. But I knew there was the silver lining of hope that he would not have one of these tubes forever, and they were sustaining him and helping him gain weight so we could take him home. 

End Goal for My Preemie

While my mama’s heart broke to watch him be in pain, I knew that our end goal was in sight and that my sweet boy would come home with us happy and healthy. He is now almost ten months old and is the happiest (and chunkiest) baby ever! Baby probably weighs well into the 20s, and his pediatrician is pleased with his growth along the weight charts for his age group. He now takes formula (8 oz bottles every 4-5 hours) and eats table food/baby food. Encourage any mamas who have a preemie baby with a feeding tube to do your research on them!

They also have plenty of educational classes and qualified professionals to guide you through the process and answer any questions or concerns regarding the tubes. They may look scary, but the tubes keep your baby alive. And that is all that matters! I am thankful for them now and how they helped my son gain the weight he desperately needed to thrive. This day will forever have a special meaning to my family and me every time we look at my sweet son’s face! 

Yayi Side Note

Uhm, this baby is delicious. He is fat, happy, satisfied with life, and WELL loved amongst his tribe. Maybe I am biased, but my grandchildren are better than all the cheese and coke in the whole world. That is a blog post for a different day. My daughter and son-in-law are rocking this parenting thing!

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Medical Issues, Opsoclonus Myoclonus Syndrome

New Day New Doctor Same Story

New Day New Doctor Same Story

New Day New Doctor Same Story
Photo by Karolina Grabowska on

After the events of Monday, Tuesday, and Wednesday, I get to gear up for the Thursday road trip to a town about an hour and a half away to meet a new doctor. Sadly, New Day New Doctor Same Story. This really just gets exhausting. Wasted time on my part and on the doctor’s part. Can anyone help? I don’t know. Seriously, I’m not feeling it.

The Drive

It was benign. My kid watched a movie and I listened to some praise and worship music. I prayed a lot about the situation going on with another. It was a nice quiet, easy trip. Once there, we realized we weren’t in Kansas anymore. The facility is a satellite facility for Vanderbilt.

Our previous doctor…well…we weren’t playing well in the sandbox together. I had had all I could stand of her niceties, not showing up, blowing me off, not returning calls/messages, and almost taking the life of my son with no regard. So, this was my last local-ish doctor to try.

Grilling 101

I’m pretty much over formalities so I tend to get to the point. So, this is how our convo went this afternoon.


Me: How many cases of opsoclonus myoclonus have you seen?

Dr.: I have personally seen 2 (not treated just seen).

Me: Out of those 2 cases, were they neuroblastoma related or non-neuroblastoma related?

Dr.: Neuroblastoma related.

Me: So you have never met and idiopathic opsoclonus myoclonus syndrome case who is medicinally resistant?

Dr: No. This is my first and I started to look at his file and there is a whole lot to read. It will take me a while to process it all.

My friends dub me as the “defeatist” because I get defeated easily and don’t really like to search. I do not do research or        dig too deep. I am an 8 to 5 general neurologist that likes cut/dry cases and I believe your son is not cut or dry.

Me: Indeed. Are you willing to put on your thinking cap and try to figure out other things we can try?

Dr: I don’t really have a network of people and I’m not sure I’m willing to do that but I can write scripts and letters as you              need them. I can also do workups every 3 months. I am happy to consult with someone with more experience.

Well Alrighty Then

I informed him that I could care less if he had a good bedside manner. He needs to be nice to my child, but I need honesty and willingness. I explained that to him, all my child was was a bunch of words in a chart. See this child for 20 minutes and then forget him again for three months. I told him that my child is a human that deserves to be more than a group of words. He deserves a future where he doesn’t have to struggle and compensate every single day of his life.

Needless to say, my child wasn’t even seen because I took up the time allotted for us. We do have another appointment scheduled where he will do an initial assessment. From there, we will schedule some scans that need to be done every year. He wants to uphold his oath of “do no harm.” I explained that simply driving down the road to the doctor affects him and triggers his PTSD. We have to move past that “do no harm” and get to the bottom of this.

It’s time and I will be heard.

Backing down is no longer an option.

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Moebius Awareness Day

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Guest Blogger, Medical Issues

Moebius Awareness Day

Moebius Awareness Day

Moebius Awareness Day

I met this sweet family many many years ago. Honestly, I believe her second son was just a newborn and he just turned 18 years old. Seems unreal that time flies that fast. When I learned that Moebius Awareness Day was on January 24th (also my son-in-laws birthday), I reached out to see if she wanted to write about her experience as this was quite unexpected. She agreed.

Meeting This Family

What an honor to bring awareness to this syndrome and I am blessed to know this family. On a funny note, we met at a homeschooling field trip that I had arranged back in the day. It was the airport. I believe I only had five kids at the time and April had two. Her son was in a carrier and Kaitlyn was in her stroller.

My first reaction to seeing this precious little soul was the amount of hair this child has on her head. I mean…the girl has hair and it is dark, curly, and gorgeous! Her eyes were big and beautiful. Honestly, I didn’t realize anything else when we met. This girl child looks just like her mom! Carbon copy. We became friends that day and it has been a joy to watch her expand her family and to just love on them when I can!

Funny Story

We belonged to a homeschooling co-op. I worked with the little people, April worked with toddlers, I believe. Honestly my youngest child, at the time, was three. They went outside to swing on the swing set. When they came in, April found me and said that she thinks she scared my child and that I might need to talk to him. She tried to remedy the situation but felt like he needed more explanation. Once I realized what had happened, we laughed and laughed about it.

As she was swinging her daughter, Kaitlyn, she was in front of the swings. She was grabbing legs and pushing them back as she was helping the kids swing higher and higher. While she was swinging her daughter (with what I’m assuming is my son beside her in another swing), she grabbed Kaitlyn’s legs and her leg popped off into her hands. LOL.

Scared my son to death! I’m still cackling and that was probably 15 years ago! Crisis was averted. We explained that her leg wasn’t real and that it could come on and off…the look on his face was priceless. I could go on and on about her and her family. All stories have an element of love, faith, perseverance, friendship, and food.


Moebius Awareness Day

She is gorgeous and hysterical! Kaitlyn is brilliant, capable, and she amazes me! I have loved hearing her play the violin and it terrifies me that she is driving. This isn’t because she isn’t capable it is because in my eyes, she is still 18 months old. Her love of Jesus is unmatched. She is an overcomer and the Lord has amazing plans for her and her future. Honestly, I could just squeeze her to pieces! She is willing, able, capable, and just a phenomenal human being.

April’s Story

This here is my beautiful daughter, our firstborn and the one who made me a mom. This is Kaitlyn.
Moebius Awareness Day
Kaitlyn was born July 12th, 2003, five days past her due date. After a long labor, she entered the world weighing 6lbs, 13 oz. The first words I heard after she was born were serious but kind. “April, look at me. You have a beautiful baby girl, but she is missing her hand and foot.” And at that, the midwife placed this little baby on my chest. I was instantly in love as I looked at her tiny features and fresh, pink skin. She was here. She was mine, my baby girl.
As a side note, I had 4 ultrasounds during my pregnancy. Somehow her abnormalities were missed. And I never once had a concerning thought that our baby wasn’t healthy. Looking back, I am SO thankful that we didn’t know ahead of time. I enjoyed my pregnancy in perfect joy and peace. There was nothing that could’ve been done before she was born anyway.


Several weeks after her birth we learned that Kaitlyn was born with Moebius Syndrome (or sequence), a rare birth defect that only affects between 2 and 20 babies per million. Moebius Syndrome causes missing or underdeveloped 6th and 7th cranial nerves from lack of circulation early in pregnancy. Those nerves control all facial expressions, lateral eye movements and blinking. Being that it is a sequence (think of falling dominos), it can cause a myriad of other symptoms and syndromes, too. In our case, it also caused Kaitlyn’s left hand and foot not to develop at all, a clubbed right foot, both of her eyes were severely crossed, and she had a high palate and an asymmetrical tongue with limited movement.
Looking back, the grace of God helped us walk through the first several years of her life. We were in a complete whirlwind and I’m not sure we really knew it. We just did all the things. In the early weeks she would just scream and we didn’t know why. I was trying to breastfeed, but after she lost down to 5 lbs.13 oz, we started supplementing my milk with human milk fortifier to add calories to her diet.

Haberman Feeder

Moebius Awareness Day

There was a special bottle called a Haberman Feeder that saved her from having a feeding tube. It was a God send! We would also add formula to my milk when I couldn’t keep up. The nerve damage in her face had kept her from being able to suck at all. I spent countless hours pumping what milk I had left after not knowing that she wasn’t sucking for so long…a new mom problem!  Her daddy would be up during the night for all of her feedings, taking care of her while I pumped every 2 hours. Very slowly, she started to gain weight and following her own growth curve! (But at a year old she was still only in 3 month clothes.) Looking back at those early pictures is very hard. The first six weeks I was starving my sweet baby and didn’t know it!

Speak Up!

Our days were filled with so many Dr. appointments and therapies! It was like a full time job! We had done our research and in turn had to educate every doctor, nurse, specialist and therapist that we saw. Most of them had never heard of Moebius Syndrome. One of the biggest things I learned really quickly is that YOU have to be your child’s advocate! We were told the wrong thing more than once. But after ignoring that little voice inside and things going really wrong (like having to pull her 8 front teeth at a year and a half old) you quickly learn to speak up! Even if you’re only a 20 year old, first time mom.
Moebius Awareness Day
One of the best things anyone ever told us was the nurse at the genetic clinic. As she brought us the freshly printed information on Moebius syndrome the day Kaitlyn was diagnosed, she said something like, “Always remember, she is not her diagnosis. She is first your daughter.” It was so profound to me! I saw her as my daughter who had extra to overcome. I decided to see her as capable until proven otherwise. As she grew I would help her after she tried doing something herself…usually several times. Then we would try to figure it out together! Sometimes I had mom guilt for not making it easier on her. But she has definitely risen to the challenge and has amazed us all!
Moebius Awareness Day

All About Kaitlyn

Today Kaitlyn is 19 years old. She is a joy to be around. Kaitlyn is fun and spunky…and maybe a little bit too stubborn. She is independent and has friends…and a car. Honestly, she has exceeded our expectations!
Moebius Awareness Day
Just for fun, here are things that Kaitlyn can do:
Eat a normal diet
Ride a bike
Make new friends without help from her mom. Ha! (remember no facial expressions)
Play the violin and piano
Moebius Awareness Day
Put her thick hair in a ponytail
Tie her shoes
Drive a car (or our big van!)
Work a job
Move out on her own
Live in a foreign country
Moebius Awareness Day

God’s Comfort in Moebius Syndrome Journey

To date Kaitlyn has had close to 10 surgeries. I won’t pretend that her life has been easy, because it hasn’t. She is still in pain daily as she pushes through doing things that others don’t have to think about. In the beginning I remember staring at my tiny baby knowing that she would have to go through so much suffering. It didn’t feel fair. When I was searching for answers as to “why”, God led me to the story in the Bible about the man born blind.
In John 9:1-3 it says, As he passed by, he saw a man blind from birth. And his disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” Jesus answered, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him.”  That gave me so much peace! Her life was meant to display God’s works for others to see. God was in complete control and created her the way He did ON PURPOSE! And He has been with her every step of the way.
The first Bible verse we memorized together when she was a little girl is Psalm 139:14 “I will praise you for I am fearfully and wonderfully made. Marvelous are your works and this my soul knows right well.”
Moebius Awareness Day
Moebius Syndrome has been such a big part of our lives, but not quite as big as we had expected. Kaitlyn is who she is today because of the struggles she has overcome . God knew what He was doing even when we didn’t. He has always had a plan and His grace is enough, this I know!
Moebius Awareness Day

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Medical Issues

FDA Warning for Ethiopians

FDA Warning for Ethiopians

FDA Warning for Ethiopians
Photo by Kelly on

This is an updated post on the FDA Warning for Ethiopians. Understand, I am not a doctor and I am not advising you to do anything medically related. Please consult with your physician regarding this information. Also, please have them do their research before blindly administering these medications to your loved one.

The reason I say that is because when we were faced with a surgery, for our child, we would have never known this information. The reason we knew it is because my sister had also adopted from Ethiopia and she was made aware. I believe she was made aware through her adoption agency and support group.

A Little Bit About Our Story

There is not much I will share regarding the surgery that we needed for our child. However, I will share that when we went in, we informed the doctors and the anesthesiologist, they told us they had never heard of that before. We stood our ground and the surgery did not proceed until they thoroughly researched this topic.

Upon review (after quite a bit of time), they did come back and apologize to us. It is now flagged at this hospital (and other hospitals that we have attended). It isn’t just flagged for our child, it is flagged for people that are from Ethiopia. Granted, nothing may have happened but I wasn’t going to let my child be the guinea pig.


Here is the brief snippet from the article that is listed below:

“Some individuals may be ultra-rapid metabolizers because of a specific CYP2D6 genotype (gene duplications denoted as
1/1xN or 1/2xN). The prevalence of this CYP2D6 phenotype varies widely and has been estimated at 0.5 to 1% in
Chinese and Japanese, 0.5 to 1% in Hispanics, 1 to 10% in Caucasians, 3% in African Americans, and 16 to 28% in North
Africans, Ethiopians, and Arabs. Data are not available for other ethnic groups. These individuals convert codeine into its
active metabolite, morphine, more rapidly and completely than other people. This rapid conversion results in higher than
expected serum morphine levels. Even at labeled dosage regimens, individuals who are ultra-rapid metabolizers may have
life-threatening or fatal respiratory depression or experience signs of overdose (such as extreme sleepiness, confusion, or
shallow breathing).”

The website through the FDA can also be reviewed with your health care professionals. You can always go to All Africa to read more.

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Resources for Special Needs Kids

The Ability to Laugh Again

Medical Issues, Opsoclonus Myoclonus Syndrome

Resources for Special Needs Kids

Resources for Special Needs Kids

Resources for Special Needs Kids
Photo by Alexander Grey on


Free Items for Children with Special Needs

Here are some Resources for Special Needs Kids. There are many more listed on Meriah Nichols Website. If you have participated or know of any other resources, please drop me a comment below so I can add it!

Ones We Have Participated In

Songs of Love Foundation this one was AMAZING, and they are so wonderful! 

Weighted Blankets, Lap Pads, and Fidgets go above and beyond to accommodate you. We did give them a small donation because they made four blankets, six-lap pads, and several fidgets. Again, above and beyond.

Make a Wish, and if you go through MAW, you can also receive a scrapbook from Crops of Luv. Wow. MAW provided something I never thought I would be able to do. Not only did they take my HUGE family, but they added in H’s biological brother and sister. Also, my sister and brother-in-law raise those kids. In total, 13 people were going without a blink of an eye! Crops of Luv, words cannot express my son’s joy at seeing your creativity with his Disney scrapbook.

Rare Bear Program. Such a cool thing. They ask what your child likes and try to create a bear with that fabric. It is very well made and very well-loved.

Free Cake from Icing Smiles. We have just applied to this, so I will keep you posted.

National Park Pass includes anyone in the vehicle with your child. The child HAS to be in the car. We have used this quite a bit, and it is a lifesaver.

Ones We have Not Yet Applied For

Bikes: here’s a comprehensive list from the Friendship Circle’s blog of places to turn to for an adaptive cycle. (note: scroll down – the formatting of their post is a little different, and it threw me off for a minute).

Bikes, Wheelchairs, Adaptive Equipment, and more: Variety’s “Freedom Program” funds a lot. Check out the program here. Apply for help here.

Angel Flight: free air transportation for any legitimate, charitable, medically related need.


Medical Issues, Opsoclonus Myoclonus Syndrome

New Video from NORD

New Video from NORD

New Video from NORD

Here is a brand New Video from NORD. For those who have no clue what NORD is…it is the National Organization for Rare Disorders. This site does not have run-of-the-mill type of conditions. By “run of the mill,” I mean those diagnosed frequently.


This site is all of the hardcore, rare, little to no treatment type of condition. I am very excited that Mike Michaelis and his team have worked hard on the OMS Life Foundation.

Who DOES NOT buy things from Amazon? If you do, you can go to Amazon Smile and make all your purchases there. It is the same as Amazon, only this time, a percentage of what you buy goes to a charitable donation.

Amazon Smile does not cost you a dime:

  1. Choose your charitable organization and type in “OMSLife Foundation” (in Cypress, TX).
  2. Select that option.
  3. Anything you spend will help the foundation raise money and increase awareness of H’s condition.

NORD Rare Disease Video Library

“The NORD Rare Disease Video Library houses educational videos on rare diseases for patients, caregivers, students, professionals, and the public. NORD works with medical experts and patient organizations to develop the videos, which are made possible by individual donations, educational grants, and corporate sponsorship. NORD is solely responsible for the content.”

All About Opsoclonus Myoclonus Syndrome

All About OMS

If you click on the above link, it will take you to an awesome video that explains OMS very simply. All the things in my head have formed into a video. I am pleased as punch for them to highlight this condition.

OMS is not a “money maker” because it is so rare. That means funding and research are not done because there is nothing for big pharmaceutical companies to make. These kids are like human experiments. It is all trial and error.

Let’s bring light and awareness to this condition and help kids get a PROPER diagnosis and begin proper treatment. I don’t want another family to deal with everything H has.


Medical Issues, Opsoclonus Myoclonus Syndrome

Reflecting on an Anniversary I Would Rather Ignore

Reflecting on an Anniversary I Would Rather Ignore.  It has been 5 years.  So much is the same, yet so much has changed.

But, on this day,

Dys- Learning Disabilities

Our Lives Changed Forever

Anniversary I Would Rather Ignore.

What began as a somewhat normal day.

Turned into……

A nightmare.

Get up at 8:15 am

G got H up and ready to eat breakfast.

He ate normally.

Noticed he was a bit needy.

He wanted to be in my lap, at all times.

He was a bit whiny.

The boys saved me and took him to their room to play with Legos.

That lasted for 10 minutes.

I kept hearing N say “buddy, you are not in trouble…why are you shaking and screaming?”

I called him back into the dining room.

We snuggled.

He still was throwing a fit.

I had him sit on the step to calm down.

As he shook, he cried.

I told him to stop shaking and he could get up.

He stopped.

He ate lunch.

N put him down for a nap at 12:30

We were all relieved because we would have no screaming time.

At 4:15, we got him up.

He was carried downstairs (as normal) and put in my lap.

We snuggled until he woke up.

I told him he needed to sit on the potty (5 steps away).

I put him on the floor.

He screamed.

He Fell

I thought his legs were asleep, so I picked him up and rubbed his legs.

After about 5 minutes, I put him back down to go to the potty.

He fell again.

Concern began to enter my throat from the depths of my toes.

I had N go across the room (about 10 steps away) and I had H walk to him.

He wobbled like he was drunk, cried, shook, and fell.

A Year Ago Today

That’s when I knew……

Our lives would be forever changed.

Please pray for a miracle.

Romans 4:18a “Even when there was no reason for hope, Abraham kept hoping—believing….”

Romans 4:20-21 “Abraham never wavered in believing God’s promise. In fact, his faith grew stronger, and in this he brought glory to God. He was fully convinced that God is able to do whatever he promises.”

Jeremiah 29:11 “For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope.”

2 Years Ago Today

He walks, unassisted.

We had our wheelchair ramp removed.

He can ride a tricycle.

Most of the time, he can feed himself.

He struggles with this speech.

Also, with behavior.

Wobbly legs, but better.

Shaky arms/hands are still troublesome.

He runs.

The Meds are working.

God is good.

We have come a long way, but there is still a long way to go.



Faith Journey, Medical Issues, Opsoclonus Myoclonus Syndrome

The Prophecy and The Call

The Prophecy and The Call

The Prophecy and The Call. Last December, we were at church and getting ready to worship. We have been church hunting for a while and landed on Christian Fellowship. Honestly, we knew the pastor and his wife, as well as a few families. We had not been going very long, but it was different than what we were used to attending. This was originally written on June 21, 2017.

People Watching

Before service started, there was a welcome, and then our pastor called up a man because he had a “word” to give some people in the congregation. We have learned that this is somewhat normal but still very abnormal to our family. We were not used to that. So, we sat and watched this man pace back and forth in front of the congregation.

I am a people watcher/reader, and the thing that caught my eye was that he never opened his eyes when he was pacing or talking. He kept touching the insides of his hands. You could tell that he was uncomfortable but obedient. He said that he had had this word from the Lord. Also, he wanted to make sure that it was from Him and not from this man’s flesh. However, he realized through his sleepless nights that this was from the Lord, and he had to be obedient.

The Word

He said he had a word for someone in the congregation, so we sat, listened, and watched him pace. He made his way down the aisle we were sitting on and stopped in front of Big Daddy. I felt like all the oxygen had been sucked out of the room, and my mind was whirling. He asked Big Daddy to stand up. I looked to the altar, where our pastor was standing, and he gave me a look, a nod, and a smile that it was okay.

This man, whom we had never seen or met, told Big Daddy to hold onto his hand. Big Daddy is not a tiny man, and his hands are ginormous, so when he stands, he is noticed. This man said that the Lord was telling him to “Hold on. Hold on tight to the rope and do not let go. To trust and hold on tight.” I felt an energy move through me, and tears flowed freely. This was strange because I don’t usually cry or get swept up in my emotions. The moment was fleeting, but the air was thick, and I knew, in my soul, we were in for a ride.

Come the beginning of 2017, so many things happened.

My daddy had quadruple bypass surgery. Then, my niece was sentenced, and my nephew was close behind her. My daughter went to military school due to her behavior. Also, we had a family issue involving another baby that was devastating. Oh, let’s not forget my oldest daughter called off her engagement. She was downsized at work. We were also fighting with insurance companies for my son’s needs surgery. Add that to my Lady getting sick. Then, the straw that broke the camel’s back happened. We were reminded to “hold on” throughout the first six mths of 2017.

Even More

Big Daddy and I tried hard to win a case during the incident involving a family member. It was simply out of our hands. We knew what we could do to help the situation and were willing, but it was not our call. As I spoke to a friend, she said I needed to “hold onto hope.” She also noted that the Hebrew meaning of “hope” is “rope,” so hold onto the rope. I caught my breath, texted her back, and asked her who had told her that. She said it was a word from the Lord to me. I asked her if she knew the man who had said the same thing in December, and she did not know him. That is twice the Lord has said to “hold on.” I felt like we had held on pretty well.

My Sister

Then the call came. My sister called me on Tuesday, June 6, 2017. Now, she rarely calls me on a Tuesday. We’ll talk on Monday 🙂 I asked her if everything was okay, and she said she woke up to an odd text. She said it was from a friend, a former neighbor, that she used to walk with around her neighborhood. That friend said that the Lord placed my name on her heart and that she was praying for me. I have never met, spoken to, or even seen a picture of this woman. She knows me from what my sister had said, and I’m sure I wasn’t the topic of every conversation, although I am awesome like that. I told my sister I did not like that, and that meant that something was fixing to happen. My sister told me to take it as a blessing, but I was unsettled.


After he got sick, H and I spent almost two weeks in the hospital. I missed my family, was tired, and was over it. The doctors had told me 1005 things, and none of it was good. Thankfully, one day, my sister (H’s Mamaw) came up to give me some respite on MRI day.

She came in and handed me my flatter than a flat pillow, my granny’s quilt, and a gift from my daddy. Again, I am told to “hold on” in some form or fashion. I carry that with me to this day. It reminds me that my heavenly Father and my Earthly father love me and know it will all be okay!



Adoption, Medical Issues

Turning the Page of a Book to a New Chapter

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).”


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?


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 🙂


Adoption, Guest Blogger, Medical Issues, Opsoclonus Myoclonus Syndrome

Guest Blogger Big Daddy on Adoption

Guest Blogger Big Daddy on Adoption

Guest Blogger Big Daddy on Adoption

This post was originally written in 2017.

Guest Blogger Big Daddy on Adoption and his thoughts. After having three biological children, we decided to enter the realm of adoption. We believed our quiver wasn’t complete, so the decision was easy. What we didn’t realize is that adoption is HARD. It doesn’t matter what kind of adoption it is. Whether through foster care, international adoption, or one of your relatives, adoption is not for the faint of heart.

Adoption is Rewarding


However, adoption is very rewarding. Knowing that you have taken life into your home that otherwise was not wanted or was being mistreated, abused, or neglected is an amazing miracle. God intended for children to be raised by their parents, but circumstances sometimes do not allow that to happen. That’s why we took the plunge to care for the orphans.

Our Wild Ride to Adoption


As for our journey, it has been a wild ride. We have had a lot of good days and plenty of bad ones. But so far, we have stayed the course. We have tried to instill Godly values in our children while teaching them honesty, integrity, responsibility, and character. Sometimes we think that we are not making much progress, but honestly, we believe if we are consistent with the kids, they will turn out fine. Each child is different. We have learned how to parent each child with different behaviors and personalities.


At first, I was resistant to adoption, but after I met the little girl my sister-in-law and her husband adopted from the Philipines, my heart melted. I saw the love shown and given to her and believed I could do the same. So we decided to do it.

Our First Experience


Our first experience with fostering to adoption started pretty good other than the fact that these children were brought to us, and we knew nothing about them. It was hard, especially with Shay, because she was non-verbal at two years old. She never did warm up to me very much. Tay, on the other hand, was very happy and always smiling. Also, they were very sick, and we could not get them well.


Then the day that nearly broke us into the world of fostering/adoption happened. The kids were suddenly taken away from us by the Cabinet. We had no idea….one minute, we are raising these kids, and the next minute they are gone. We were told the reason but truly believed the social worker lied about us in a court hearing that we were not present at. I was furious, and it crushed my wife. To this day, she still has the scars of them being taken from us. We had to believe that the Lord had different plans for those sweet children and us.

Never Again?


At that time, we told ourselves we would not go through a horrible experience like we just had but decided to give it another go around. We started fostering D and G in the spring of 2007. At first, it was really good, but we learned quickly how many of these children in the child services system could be damaged. To find out the kids you just took into your home were previously abused is a tough pill to swallow.


Having to raise children during an investigation of abuse and ensuing court proceedings is not the way it should be. But the kids were safe, and we did our best to cope with the behaviors stemming from their past. We finally adopted them about two and a half years later. Since then, we’ve run the gamut of ups and downs with them. Some days are good, and some days are bad, but in the end, they are loved, and hopefully, they will be able to overcome the terrible start they had in life.

International Adoption


Our subsequent adoption was a foray into international adoption. My wife had always dreamed of adopting from the county of Ethiopia. After I met my new nephew from Ethiopia, my sister-in-law’s second adopted child. I was ready to go to Africa. The process was a lot of paperwork and a lot of money. (Not sure why it costs so much to adopt a child who has no home or no one else wants). Within a few months, we had a referral and got a picture of our son. It was amazing how we could love someone so much whom we had never met.


The anticipation was unbearable. But soon after that, we could travel to Africa and meet our son. It was an experience like none other. We met our son and spent three or four days with him. We went to court and were granted the adoption. The hardest part was leaving him there. But we were told that it should only be about eight weeks before we could return and bring him home. Little did we know then that eight weeks would turn into 14 months.

Huge Mistake Made by Home Study Agency


Our home study agency made a huge mistake, and the US government told us we did not make enough money to bring him home. How ridiculous is that? It’s a shame that money, or the lack thereof, keeps so many people from adopting children that need good homes. When we found this out, we desperately tried everything we could to get clearance from USCIS but were flat-out denied two months later. My wife was crushed beyond all belief. From December 2010 to about November 2011, she was just a shell of a person.


Yes, she lived and breathed, but that was about it. She was vacant. And there was nothing I could do about it. I believed that there was no way God would allow us to travel 7000 miles to meet a boy and tell him he would be our son, then him not ever come home. Not necessarily for our sake but for his. He was an innocent child growing up in an orphanage with 50 or 60 other children like him. But God made way for us to get our clearance to bring him home, and in December 2011, we brought J to his forever home. We were made whole.

Here We Go Again


After we brought J home, we thought our quiver was full. But God had other plans for our family. In November of 2015, we had an opportunity to take in our great-nephew, H. His mother, our niece, had been in trouble with the law and could not take care of him. H had been living with a man who believed he was the father. He had troubles of his own and agreed for us to keep H for a while. We decided to file for emergency custody of H mainly for his safety at the time. The man he was living with turned out not to be the biological father, and we were granted temporary custody of H.

His Biological Mom


His mother got into even more trouble later and was facing a lot of time in prison. She made a tough yet mature decision to terminate her rights and allow us to adopt H. I can’t imagine how hard that was for her. I am very proud of her for sacrificing for her son. H invigorated our family with joy. He has so much energy and is very sweet and funny. However, in June, he was diagnosed with an extremely rare neurological disorder called Opsoclonus Myoclonus Syndrome. He has been through a lot, which has been tough on him and us. But we take it one day at a time and trust in God for healing and comfort.

Adoption is Tough


So those reading this and considering adopting do not have preconceived notions of lollipops and rainbows. Adoption is challenging and not for the faint of heart. But the rewards are unending. Giving a child a home and stability is a beautiful thing. Whether they know it or not, children crave structure, discipline, and a sense of worth.


That’s the beauty of adoption.