Adoption, Medical Issues, Opsoclonus Myoclonus Syndrome

Trudging Through the Muck

Trudging Through the Muck

Trudging Through the Muck. It is so challenging to parent a special needs child. Parenting, alone, is challenging. My child has a very rare condition called Opsoclonus Myoclonus Syndrome. Typically, a child with OMS, they will have neuroblastoma in their chest cavity. However, some cases are idiopathic, like ours. Idiopathic means there is no real reason for something to happen. In short, we have no clue what brought OMS along in our child’s life and body.

One day, my child was completely developmentally on target and perfectly “normal” and then the next day, he isn’t. He went from fine to newborn status with a side of extreme shaking, much like Parkinson’s. My child had to relearn all the things. He had to learn how to sit up, hold his head up, walk, talk, feed himself, etc. It has been one of the most challenging journeys of my life.

Support System

I do have a great support system (with the exception of 98% of any doctors). He has grandparents, great-grandparents, siblings, therapists, church, etc. However, no one really knows how it has all played out except those of us who have lived it, daily, with him.

My husband, 6 of my children, my son, and me. We are the ones who have walked it day in and day out. There have been many times I have had people at church pray over us, come to our home to pray, family, friends, who have all loved us well. Truly, they have filled in the gaps in so many ways from encouragement to prayers to food to just listening to me cry.

Yet, there is so much they do not know. There is so much I hold close to my heart because it is hard…sacred…forever changing. I have had to share more of these sacred moments to his therapist because my child is remembering some of the darker moments of his illness. Moments I thought he wouldn’t remember, that I prayed he wouldn’t remember, but he does and we have to deal with it.


When I talk to people about things that are just a part of our life, I realize it isn’t normal. The looks on their faces are shocked, saddened, horrified, and I am just chatting away. Oblivious. This is our normal but when I mention something or someone notices an odd behavior, they are dumbfounded because I speak of this so matter-of-factly.

In the beginning, for several years, our goal was to keep him alive. He lost 3 years of his life doing a massive reboot of relearning everything. Time stood still and we had start over. He had so many hurdles, doctors appointments, therapists, etc. that that is all we did. It is the physicality of the disease that we had to address. Now that the physicality is not so much an issue (barring when he gets sick), now it is the backend of OMS that is kicking our ass. The backend is behaviors, learning disabilities, developmental delays, sleep issues (for some OMS kids), etc.

All the Things and Then Some

This past week, my son has struggled with impulsivity, anger, sadness, sitting still, and listening. The bus monitor had to come to our door to address and issue. We all met Jesus on my front porch. I am going to have to call her and share with her about our kid because she doesn’t know him. To her, he looks normal and should act normal. That simply isn’t the case. Without sharing too much, I intend on shining some light on our rare gem of a child.

He struggles with sitting, on the bus and not listening to simple instructions. The bus monitor was at her wit’s end and I get that but does she ‘get’ him? She doesn’t. That isn’t her fault. My son “looks” like a typical 9 yr old but what she doesn’t see is that he is developmentally about 6 yrs old.

Our son will argue with a tree stump, so he is game on and ready when it comes to anyone in authority. I think he takes after our third and possibly sixth child. Good grief they would argue with anything whether they are right or wrong. The arguing, alone, would make a grown man yield just to make them stop speaking. Our son is the exact same way. He may have a future as a lawyer.

On A Typical Day

I don’t even notice the difference. The age difference between my 6th and 7th child is 8 years. That is a huge gap. In my mind, he is on target until he is with other kids who are his age or even younger. That is when I mourn the loss of what is “normal” and have to readjust to what is in front of me.

It is hard. I am not going to lie. His challenges are steep but everyday we are trying new things but this past week, I was just tired. I get so tired of trying to explain it all away. He is like this because “blah blah blah.” All I get in return is the look of pity or a blank stare of confusion.

We are addressing all of this in therapy. That isn’t going well but we still do it every single week. He has a teacher that loves him and sees him even in the midst of chaos. We have a family that is supportive and a church that is faithful to pray. He is constantly seeing doctors, we have gone gluten free, and so it is an ever revolving door of learning.


Last night, we tackled some hard things that have happened and attached them to emotions. He and I spent about 45 minutes working on identifying emotions and understanding them. My son has a lot of medical trauma, birth trauma, acute trauma, and more. We sat and talked about specific things (lying, stealing, and fit throwing). Each scenario, he chose an emotion card and made a statement “I feel sad because kids at school won’t play with me.” We work on how he can approach these kids and did a little role-playing.

In situations like one of our children not seeing him or his birth mom, we pick the scenario and he makes the “I feel” statement with the emotion with it. I come alongside him and I make an “I feel” statement and we talk about it until he doesn’t have anything left to say. When he is done with the topic, he simply says “let’s move on” and we move on.

I am hoping this helps. The emotion cards are in his room, on the fridge, and I am going to laminate some and put them on his backpack. We have also started giving him some primrose and some all natural calming things to help with the impulsivity and rage.

In The End

I am not giving up on him but I am really tired. The thought of being on easy street sounds so good right now. Yet, everyday is a new challenge. I try to tell myself that he really is on target, even though he is behind developmentally. Honestly, I would chose him over and over even knowing what I know now. I love him and I know that he is meant to be my son, even on the hard days.

However, I would love for a concept to sink in with him. I would love for him ‘get’ it. My fear is that he will be labeled without people understanding who he is and what is behind the behavior. It’s hard to explain. If you are out and about and see a tired mama with a raging kid, show her and her kid grace. You have no idea what is going on behind the scenes. Honestly, you are seeing a fraction of what life is like in an isolated moment. Offer a smile without advice. Prayers are always welcome and you can definitely say a breath prayer as you walk by them.

Love. Be kind. Don’t scream at a kid who might be screaming at you. Even if they look “normal” most diseases are invisible. Grace upon grace.

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Let’s Talk Hair Loss in Women

Let’s Talk Hair Loss in Women

Let’s Talk Hair Loss in Women can be devastating. Let me rephase that statement. Hair loss in women IS devastating. I don’t care who you are or how confident you are in your own skin. It is what it is. Now, can people adjust, accept, and learn to love themselves. Yes they can! My hair loss is from Psoriasis, which has led to Psoriatic Arthritis.

However, I am not one of those people. I have had a very difficult time adjusting to my hair loss or realizing how bad it was until I made the mistake of taking pictures. That is when it hit me. My husband would sugar coat it and say “it isn’t that bad.” Let me tell you, it was (sometimes still is) that bad. Reality hit when my I finally showed my mom. Her gasp told me how bad it was. She did not do that out of meanness, she was shocked because I cover it well.

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Stigma About Hair Loss in Women

Man, it is HUGE. It is easy to say “just get a wig” but to get a good quality wig, that costs money. At the end of the day, every woman wants a head full of pretty hair. My therapist told me to get extensions that could easily come to $3000/year. I was like “well, I could sell a kidney.” Honestly, that sounds ideal, if I had the money and IF I had the hair to attach the extensions too. I had neither. My head is itching right now typing this all out because it is still so triggering for me, emotionally.

I bought a halo type wig. Well, that is all well and good IF you have the hair to hide the band around. Plus, I looked like Billy Ray Cyrus circa Achy Breaky Heart era. I put Rogaine for women. Waste of time and money. I stopped washing my hair until my hair lady told me I had to wash my scalp at least 1 time per week to help with the natural oils in my hair. For the longest time, I wouldn’t even comb it because it came out in droves.

My depression hit a really low low.

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This was after scraping my head with a metal pick and then scalding my scalp with hot water to stop the itching.
This was after combing my hair one time.
This was after combing my hair one time.

Rallying the Troops

It was to the point that I couldn’t cover it up anymore. In her amazing fashion, she encouraged me. “It will grow back. We will just get you a really good wig. It is okay, you are beautiful.” Encouragement upon encouragement. She then rallied my sisters (one local and one in Georgia) and we set out on a road trip to meet my one sister in Tennessee for a day trip.

We have done this one other time and it wasn’t to go wig shopping. It was just to have a time with all of us girls to eat, fellowship, and watch our mother in her element of junking. This time, there was an intended purpose. Biggest sister was the driver, my Oak was the navigator, I cried a lot, and second big sister did the arrangement of where we would meet.

You can see the plaque. These were ALL over my head.
You can see the plaque. These were ALL over my head.
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This is the plaque that would come out with a wad of hair still attached.

Top This Wigs

My sister found this place called Top This Wigs in Murfreesboro, TN. You book appointments, so it is completely private and quiet, which I needed. We got there, loved on each other and then walked in. The owner was pumping praise and worship because this business was her mission. Her husband had cancer and this is how she wanted to help others. My family immediately started looking and I just stood there, with my hands in my pockets full of shame and sadness.

They all picked a wig for me to try and I sat in the chair. She put the first one on me and I burst into tears. In a moment, I was surrounded by my Oak and my sisters. They cried with me, over me, and prayed. The owner did, as well. Eventually, we got to giggling and started the process all over again.

I found the one that would be my “work” wig because I cannot wear my normal color hair (my hair is usually blond with purple/hot pink highlights). The one I felt my comfortable in was a pretty purple wig, but I couldn’t afford both. Unbeknownst to me, I paid for my “daily” wig with the help of my sister and my Oak. The owner of the store gifted me the one I really wanted because she said she could “see me come to life” in that one.

We all cried…again.

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I had a little bit of hair on the top, the back had not been bothered too much, but the baldness was around the entire crown of my head.

Learning to Love Wigs

I still struggle, occasionally. I have bought some wig grips that help keep it in place. Chiquel has helped with different ways to style, how to use a flat iron on it (if the wig has synthetic fibers), and how to wash it. They are on TikTok, YouTube, FB, and Instagram with a ton of videos! I highly recommend watching them.

My purple wig, I get a ton of compliments. The work wig, I wore at my interview and no one knew it was a wig. During the summer, I wear ponytails a lot because the wigs are too hot. Hot weather + wig + menopause = Angry woman. My hair is growing back, slowly but I know that I have something to fall back on when I need it. I keep them on a wig holder and they scare my kids every time they walk in the bathroom!

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Words of Wisdom

In the end, the support and love from my family has helped me get through this hard time. It is vain, but this is a real sadness for me. My lose their hair and they look hot. Women lose their hair and they look haggard. I hate that I even feel that way, but my feelings are valid and I am moving through these emotions and allowing myself to feel all the things.

Your hair doesn’t define you but you are allowed to feel and not be shamed for those feelings. Those who have never experienced anything like this have lots of great ‘advice.’ In the end, they don’t understand because they have never been there. They are just trying to comfort you. That’s okay but sometimes, you just need to cry and grieve and not to feel bad for being sad that you are losing your hair.

Know you are still beautiful with or without hair, eyebrows, or eyelashes. Let others love you when you don’t feel like it. My village…they are what dreams are made of and I hope each person reading this can have at least 1 person in their village to surround them with love and support.


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My Story of Psoriasis and Psoriatic Arthritis

My Story of Psoriasis and Psoriatic Arthritis

My Story of Psoriasis and Psoriatic Arthritis

My Story of Psoriasis and Psoriatic Arthritis. When I was 14 years old, my grandpa died. That was the first person to pass away that I was close to and it shook me to my core. My body reacted in weird ways to, I am guessing, was the stress of the whole thing. I was extremely sick (physically) and I got these weird places on my shins. They didn’t itch but were raised and covered about 95% of my lower legs. I could shave my legs and the bumps would go down, but it was thick and would raise back up almost immediately.

Then, my hair started falling out in clumps. I would have “knots” on my scalp and chunks would come out, my eyebrows fell out and so did my eyelashes. I was bald, at my temples and my scalp itched something awful. It felt like, well, knots about the size of a pea and sometimes a lima bean. I could take my fingernail and dig it through the knot and still not feel it on my scalp.

That was my new normal. Eventually my hair grew back, my eyebrows, and my eyelashes grew back as well. My legs, however, stayed scaly. There were times when it would get worse on my legs or my knots would get worse, but I just dealt with it. I had so much hair that I would get a headache when I put it in a ponytail. It was super thick.

Over the Years

My legs eventually cleared up and now I don’t have any places on my shins. Occasionally, I would have spots pop up, here and there, but nothing big and my scalp really didn’t itch too bad (I did have excessive dandruff). I did notice my hair was thinning but I chalked that up to postpartum hair loss that never came back.

Whereas, typically, my raised places would stay on my shins, I started getting them on my arms, upper thighs, and even my face and eyelids. I was bumfuzzled because I didn’t know what it was and no one would tell me. There have been many times I have gone to my doctor and asked. One time I did got to the dermatologist, as an adult, and because I didn’t “actively” have anything on me, she blew me off and made me feel stupid. Since they were no help, I would just treat it with Triam Cream until it went away. For my scalp, I did T-Gel and other medicated shampoos.

About 4 Years Ago

My scalp kept getting worse, my places kept popping up everywhere, and now my feet were hurting so bad, I couldn’t hardly stand up. I know…weird but true. My shoulders, hips, fingers, and knees hurt. I can handle pain, as I have a high tolerance for pain, but my feet… It felt like when you get punched in the nose and want to immediately throw up, well that’s how it felt every time I stood up.

I went to a Podiatrist and they gave me a steroid shot in my foot and told me I would be fine. #Liar

Everyday, I pressed on with doing massages, hot water, special shoes, chiropractic care and nothing ever changed. My PCP literally said “I call bullshit on what you are saying.” Those were his exact words, so why continue to tell people something is wrong when no one listens.

For About 6 Months

I got my “places” on my inner thigh and it spread EVERYWHERE! It covered both my thighs, groin, and stomach area. It looked like I had had scalding water poured on me. It was hot, raised, itched a little and was continuing to spread. I did call that same PCP who said that I was fine and it would go away.

#Liar and he is no longer my PCP.

I eventually used alcohol (which burned) to dry it up, calamine, A & D ointment, oats, you name it, I used it. My feet were worse and my scalp felt like fish scales. I because using a comb that was metal to scratch my head till it bled to get the scales off because it itched SO badly. Once I did that, I would go and stand in the hottest shower I could and scalded my scalp to get some relief.

My hairapist tried to help and give me anti-itch/soothing shampoo and conditioner which didn’t help. I got to where I would even wash my hair because A) it hurt B) every time I washed it, WADS would come out C) I thought if I stopped using conditioner and coloring my hair, it would help. #ItDidNotHelp

Eventually I Got an Answer

I got a new PCP who looked at it and said “I have no clue, it looks like white powder and you are losing your hair, but you should be fine.” Then, I went to another PCP and he said “Oh, wow, that’s bad.” Super helpful. I tried to explain the pain that I was in because it stayed in my feet but was migrating to other parts of my body. I couldn’t sleep at night, my head always hurt, my vision was weird, the pain was horrible. The Rheumatologist said that it was all in my head and I was fine. I was “wasting” her time. #HatefulWoman My son-in-law told me if I didn’t do something, he was going to take me and use his words with the PCPs.

Finally, I found a dermatologist, not in my town, that gave me answers. Well, not immediately, but eventually. I drove an hour and 45 minutes to get to this place. I walked in and it is as fluffy as what it appears in that one episode of Grey’s Anatomy. Everyone was very nice and everyone was calm and quiet.

Setting Him Up for Failing

Because I have had such a hard time, I knew this was a waste of my time and I was planning on where I was going to eat for lunch. I met the doctor and he looks 12 years old. In my spirit, I was like “another boob to tell me I am fine.” I was prepared with my list because I was going to verbally diarrhea all the things for the last 36 years years in 15 minutes. Honestly, I just wanted someone to hear me and my story.

That man sat and listened to everything I had to say. He spent so much time just listening. I sobbed. The pain was so intense, I was so tired because I couldn’t sleep, and my scalp was so bad that I would have done anything just to be heard. He told me my labs were not normal and that he was toggling between 2 things with me. Lupus and Psoriatic Arthritis. That actually relieved me in some way. He didn’t do much but listen and took a biopsy of my scalp. He said the results would be back in 14 days and we would have a definitive answer.

36 Years and 14 Days Later

I had an answer! He called and said I 100% had psoriasis. I had to come back in to discuss what this meant and the next step. From that point, I headed back to the town this doctor was in and he asked me a slew of questions. I answered each one and he said that I not only have severe Psoriasis, but I had Psoriatic Arthritis and that is why my feet hurt, my swollen joints, my vision, sleeplessness, and the pain I felt were all attributed to that diagnosis.

Praise God.

He started me on a low does of Methotrexate and within two months, I felt better but still hurt and my scalp was still really bad and my hair loss was at its highest (thanks chemo). I remember him saying “how do you feel.” In that moment, no one had ever asked me that, so I was honest. I told him that I was so much better. He asked if I felt normal and I simply equated that with “is normal like being able to breathe out of both nostrils at the same time?” There was a chuckle coming from him and he said “yes.” I told him no, because I have never been able to breathe out of both nostrils and I didn’t know that was even an option but I was better. He quadrupled my chem.

3 Month Check Up

The chemo made my liver enzymes almost quadruple, so I had to get off of that immediately. He put me on Humira (shot) to take every 2 weeks. Now, I feel better. My feet don’t hurt! However, when I am stressed, I hurt. When I am tired, I hurt. Rainy days, I hurt but it is nothing like before. My scalp is better but he also gave me Clobetasol which is a game changer. It is a steroid liquid I squirt and massage into my scalp. I love that stuff.

On Wednesdays post, I will share some progressive scalp pictures. It isn’t pretty but I want people to know that they can get better and feel better with the right doctor! Do not settle for people telling you that you are fine and it is in your head. Listen to your body. For the most part, I am better. The days I am not…well, I choose to keep on moving and doing. Drink water, rest, do exercises that are easy on your joints (I swim), and take care of yourself. It is okay to do nothing sometimes.

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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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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

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

Related Posts

New Video from NORD

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.

Related Topics:

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. 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.