Tag Archives: Kinsbourne Syndrome

Reflecting on Paris and Holland

Reflecting on Paris and Holland.  My deepest desire is to go to Paris.  It has been a dream that I have had since I was young.  Art is one of my favorite things in the world.  I have a deep appreciation for all types of art.  My heart belongs to Picasso, Van Gogh, Michelangelo, Cassat.

Here I am, trying to explain what I desire and what I was given.  I am trying to learn to love where I’m at, even though it is not where I wanted to be.  This may not make sense to people who are not walking the path of being a special needs mama.  Those are walking it, get it.  Holland is not where I wanted to be…but I am learning to love it.

Flying Away to Paris

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

When I read this poem, Welcome to Holland, it reminded me of a trip that we ARE planning, eventually.  My mind began to wander and this is the scenario that I imagined.

In My Glorified Imagination, This is What Happened

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

Part 2 Uhm NO, Our Destination is Paris, not Holland.

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

Our ticket is one way.  They will be adding our children/pets, onto the plane, over the course of the trip.  This is where we will live out our days until the Lord sees fit to move us somewhere else.  I had planned on staying in France for 10 days, not my life.  I certainly did not plan on LIVING in Holland and what the heck do you mean, you will bring our kids during the flight?????????

When we started on creating our family….we had definite plans.

Big Daddy wanted 1 child and I wanted 4.  We compromised on 3.  Our oldest was high strung, motivated, and determined.  She is also super sensitive to bright lights, noises, and does not care for lots of people.  Our second was a pistol.  She was creative, loved animals, told you like it was regardless of if it was appropriate or not.  She has a bit of a lazy streak and wanted things done for her more times than not.  Our third, our only biological son, was an easy baby until he wasn’t.

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

So…Victoria, we started planning the trip.  Alyssa, we started saving for the trip.  Then, with Noah, we got on that plane and we headed to Paris, France to see all the things we could see in a 10-day trip.

Then….there was God.

As we were flying, God saw fit to allow 2 more kids to join our crew.  These kids were older, than came from severe trauma physically, mentally, and emotionally…amongst other trauma and He thought it’d be a good idea to have Big Daddy and me to raise them.  It was almost like He threw me into the lion’s den as he did with Daniel.  I was totally unprepared.  Realistically, I thought I could love the FASD (Fetal Alcohol Spectrum Disorder), RAD (Reactive Attachment Disorder, Behavioral Issues, Dyslexia, Developmental Delays, Food gorging/hoarding/stealing out of them.  Sadly, I wanted to fix them.  Plain and simple.

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

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

But then……..there was God again.

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

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

Part 3:  Welcome Home.

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

What I Envision Versus Reality

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

Overstimulated Moment

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

Ray of Sunshine

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

Reflecting on Paris and Holland

Absorbing my Surroundings

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

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

Holland and Its Beauty

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

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

Seeing Things from a Different Perspective

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

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

Live life and love without abandon.



Reflecting on the Story of Our Rescue

Reflecting on the Story of Our Rescue.  This is a story of My Hero and His Sidekicks.  After another Chemo and IVIG 2 day trip to the hospital, my anxiety took over my body.  It has snowed/iced while we were 4 hrs away at the hospital.  My tribe took over and saved the day.

My Fella


Reflecting on the Story of Our Rescue

^^^^^^^^^^This man caught a ride, in the nasty winter weather we had, rode and 1 1/2 hrs to where Hunter and I were stopped because my sanity could not do it any longer after 2 days of no sleep because of sitting in a hospital room.  We got food, and we chatted the whole way home about nothing and everything.  He never hesitated.^^^^^

Future Son In Law

The Story of Our Rescue


^^^^^This boy, who wants to marry the girl in the picture, dropped everything to drive my husband 1 1/2 hrs to where I was.  He never hesitated or complained.  He just asked how we (meaning me and the baby) were and that he was happy to help.  This girl, in this picture, called me on the way home and made me laugh, encouraged me, and chatted my ear off to keep me from wailing.^^^^^^^

My Daddy

The Story of Our Rescue


^^^^^^This ripe old man, made me a strap of leather that says “Hold on tight to God”  He made this for me because he knew, from the beginning that I would need something tangible to touch to remind me of Christ (and his) love for me. ^^^^^^

My Sisters

The Story of Our Rescue


^^^^^That girl in the blue offered me food, a hotel, a friend’s house, whatever I needed to get through…and she lives 8 hrs away from where I was.  She and her family prayed fervently for me and she spoke wisdom into me while I was having my moment driving on the ice.  Even though she was tired…she stayed on the phone with me until I had calmed down. ^^^^^

^^^^^^^This other girl in green, with the necklace….well, I can handle just about anything until I call her and she says “hey” and then I cry.  Her voice soothes my soul and she calms me to my core.  She listens and gets mad at the appropriate parts of my stories.  She gets quiet in other parts of my countenance, she researches, and she prays.  God knew what He was doing when he created these people to be in my tribe.^^^^^^

My Oak


The Story of Our Rescue

^^^^^This mama of mine…………..this mama of mine…………….this mama of mine…………there are days when I think I cannot breathe without talking to her 500 times a day.  She is my rock.  I am so thankful she is a FAITHFUL and driven prayer warrior.  She listens, she worries, she has great ideas, she is encouraging, and she never makes me feel stupid.  Ever.  She always says I’m a good mama….well….I learned from the best.^^^^^^^^^^


The Story of Our Rescue

^^^^^This girl is a prayer warrior plain and simple.  She faithfully prayed for us as we traveled home.  Those prayers eased my heart and my mind.  When she is on the “prayer train” I know that Jesus is listening and will answer.  Those two are BFFs.^^^^^


The Story of Our Rescue


^^^^^^This pretty girl shoveled the sidewalk, did and put away ALL the laundry, had all my diffusers going, made supper, and just loved on me and Hunter when we got home.  She watched kids, she delegated, and she worked on her homework so she could be ahead.  She let me sleep in the next day, as well….and fixed dinner plates. ^^^^^^^^^^


The Story of Our Rescue


^^^^^This boy had the kitchen spick and span before I got home.  He also shoveled the snow/ice away from my garage door so we wouldn’t get stuck trying to get in our driveway.  Amazingly, he loved on me and Hunter like he had not seen us in years.  He makes my heart smile.^^^^^


The Story of Our Rescue


^^^^^This girl had her chores done, her exercises done, and her schoolwork done.  She also helped unload all the excessive crap we hauled home and she put it all away.  There was no drama, no nothing…..she played and calmed Hunter while some chaos was twirling around us getting things put up.^^^^^^^^^^


The Story of Our Rescue


^^^^^This boy took care of all his chores, without complaining, and he did his schoolwork.  That is quite a challenge some days, but today he did it.  He also goofed up and got caught in a sin act, but he was quick to admit what he had done was wrong and he apologized.  I’d say that is a win-win situation.^^^^^^

Bro Man

The Story of Our Rescue


^^^^^This Bro – man got all his chores done and all his homework done, as well with no complaints.  He is loved tremendously by Hunter.  He is his lego man person and their relationship is so precious.  I think I’ll keep him.^^^^^^


On this particular day, it took MY village to come and rescue this weary woman’s soul.  I’m so thankful that God perfectly ordained each of these people to be in my tribe and to love me and Hunter so well.  God is SO good….all the time.

Reflecting on Our Family and Community

As I sit here, Reflecting on Our Family and Community, I get a bit teary.  During Hunter’s onset and 2-week hospitalization, people came out of the woodwork to help.  The, quite literally, became the hands and feet of Jesus for our family.

Family, Friends, and Friends by Proxy

My sister arranged for people to bring ME food/supplies to the hospital.  Also, my uncle and his sweet wife came and visited us.  They brought toys, food, money, and just was a presence for my weary mind.  My niece and daughter came.  They brought food and toys for Hunter.  Hunter’s MaMaw (my sister) drove up and stayed for the day.  She brought me my granny’s quilt and my favorite pillow.  Big Daddy came up for his birthday/father’s day to stay with us. My daddy made me a beautiful, hand stamped leather strap that said: “trust God hold on.”  We had friend’s that were just visiting Louisville and popped in with treasures.

On the Home Front

Our church provided prayers, helped with kids, donated money, and a food train.  Then there was Ms. Marcella founder of Marcella’s Kitchen.  She and her team of volunteers are an amazing blessing to our family…they have graciously fed our family for a month while I was gone and when we got home.  They even brought it to my house 5 days a week FOR FREE.  Just to help.

Marshall County Ramp Ministry

This group of people did not hesitate to come out to my home.  They got this ramp done in no time in order to help ease our transition from what we knew as “normal” to our new normal.  Seeing your baby go from running and playing to using a gait walker is beyond comprehension.

I cried when they came.  There were even more tears when they lovingly built this ramp.  Then, there was a flood of emotion watching Hunter navigate with his new walker.  The walker eventually turned into a wheelchair but by the grace of God.  He no longer needs assistance walking.

Here is part of the Marshall County Ramp Ministry Team.  What a blessing.

Reflecting on Our Family and Community

This picture was taken almost 2 years ago, right after his diagnosis.

This was taken 4.9.19

God is good!

We are, generally, the givers and doers.  The hands and feet of Jesus, so to speak.  So this is all new to us.  This is not the path we would have chosen for our family.   It is what it is though.  I will not love Jesus any less for this trial we are walking through.  Most days, I do not say “why us”…I say “why not us.”   Who better to walk this path than our family.  We are being taught great things.  Also, we are being blessed right and left.

I want to say that we are humbled by the graciousness and love.  We would love for this illness to just be a season of our lives, but it may be our new way of normal.  It is in hope that, one day, when we get used to our new life, that we will be able to serve others in the way we have been served.

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Reflecting on the Call and Prophecies


Reflecting on the Call and the Prophecies

Reflecting on the Call and the Prophecies

Reflecting on the Call and the Prophecies of 2016 and 2017.  Gracious, so many fleeting thoughts swirling around in my head.  We are coming up on the 2-year mark of Hunter’s condition.  Wow…2 years.  He has been “sick” longer than he was “well.”  That thought hurts my feelings.

When Our Journey Began

Anyway, our story started in November 2015.  Our family had just left our church.  We had been there for about 5 or 6 years.  Things had begun shifting, and we just felt like it was time to go.

It is *so* weird “visiting” churches when you have a trans-racial, large family.  We visited lots of small, country churches and we stuck out.  My kids ranged in age from 21 mths (Hunter had just moved in with us) to 20 years old…with some extra kids occasionally.  Needless to say, we were noticed by everyone.

The Crazy Church

Finally, we yielded and went to the church with the “crazy people.”  I think about at that statement and chuckle a bit.  We knew the pastor and his wife.  Also, we had some sweet friends that went there, so we knew that there would be friendly faces.  There was also zero pressure to be a certain way or do a certain thing.

Yes, things were different.  The music was LOUD.  People were everywhere, the place was packed.  What struck me the most, that first visit was the multicultural array of people I saw worshipping.  Blue-haired people, Pink-haired people, bald, old, young, Catholics, Baptist, Methodist…all generations and all denominations.  All these people were raising their hands, singing and worshipping.

We Swore We Would Never Go Back

But…then we went back.  Again and again.  Richie (our pastor) was solidly bringing the Word.  It was no longer “watered” down grace we were hearing…it was the solid Word of God.  The praise and worship team was terrific.  We still struggle with some aspects, but overall, the Spirit moves freely, and we are learning at rapid rates the Truth…finally, after 26 yrs of being with this man.  We are under Truth.

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.  This is something we just were not used to.   So, we sat, and we 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 the fact 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 being obedient. He said that he had had this word from the Lord.  Also, he wanted to make sure that it was, indeed, 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 that he had a word for someone in the congregation and so we sat, listened and watched him pace.  He made his way down the aisle that we were sitting on and he 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 up 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.  Now, 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 just hold on tight.”  I felt an energy move through me and tears flowed freely, which I don’t usually cry or get swept up in my emotions, so this was strange to me.  The moment was fleeting, but the air was thick, and I knew, in my soul, we were in for a ride.

Documenting The Moment

As we sat down, I recorded the date in my Bible.  I also wrote down with this man said, to be sure I didn’t forget.  We had never had that happen to us before, ever.  It was the most bizarre thing ever.

Little did we know, what was coming down tracks.

New Year, New Beginnings

2017 started out with a bang.  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 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 surgery that he needs.  Also, we need to add that my Lady was sick. Soon, she decided to go and be with Jesus.  Then, the straw that broke the camel’s back happened.  Needless to say, we were reminded to “hold on” a lot throughout the first 6 mths of 2017.

Wait, There is Even More

During the incident involving a family member…Big Daddy and I were trying hard to win a case, and it was merely out of our hands.  We knew what we could do to help the situation…we were willing…but it was not our call.  As I spoke to a friend of mine, she said that I needed to “hold onto hope.”  She also said that the Hebrew meaning of “hope” is “rope,” so hold onto the rope.  I caught my breath, and I 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 that had said the same thing back 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.  Until…

My Sister Called on a Tuesday

She NEVER calls on a Tuesday.  We talk on a Monday and then sometimes towards the end of the week.  But on a Tuesday?  What the heck?  The date was Tuesday, June 6, 2017. I asked her if everything was okay.  She said they were but that she had woken up to an odd text.  She said it was from a friend, a former neighbor, that she used to walk with. That friend said that the Lord placed my name on her heart and that she was praying for me.

I have never met, spoken too, or even seen a picture of this woman.  She merely knows me from what my sister had told her.  I’m sure I wasn’t the topic of every conversation…although I am awesome like that.  I felt like my stomach just jumped up into my throat.  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.

Rogue Zebra Spotting

That Tuesday, after a nap, we saw a rogue zebra in our living room.  All the pieces to my puzzle were being revealed…one piece at a time.

So our journey moves on.  The prophecies continue to flood in and the and the word HOPE continues to permeate every facet of our lives.

Enjoy the Concise Reflections of how our lives were turned upside down by our 7th child simply taking a nap on June 6, 2017.  Welcome to our reflection journey.

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When Life Gives You Lemons

When Life Gives You Lemons

Squeeze the Crap Out of Them and Smile

When Life Gives You Lemons, squeeze the crap out of them and smile.  Today has been an emotional one for me.  There has been nothing spectacularly bad happen, just somedays, the magnitude of everything hits me.

Mondays are therapy days and we are SO blessed to have such a great team of therapists that work with Hunter every single week.  They keep a smile on their faces and they encourage Hunter (and me).  We all work well, as a unit, to accomplish the greater goal of seeing Hunter succeed.

Heading to Horse Therapy at Cassidy’s Cause

Tears flowed, as we headed to therapy today.  I just couldn’t keep it together and I can’t stand it when I’m overly emotional.  Hunter was good, ready to go, and happily singing to the music we were playing.  I, however, just let the waterworks flow.

We got there and our OT came with a smile on her face and new blocks to play with.  We worked on getting his Theratog on (what a crapfest that thing has been) properly.  Then, towards the end of the session, I asked the unthinkable.

Do you believe this is helping him?

Our OT is phenomenal.  I mean tenderhearted, great at her job, sincere, loving, God fearing…she is awesome.  She said what I was already feeling.  I believe this is what makes our team good.

She knows the flu season is coming and Hunter cannot get sick.  As well as, she sees the ebbs and flows of his condition.  All the way, teaching me techniques and toys that can help him.  We discussed just taking a break.  She knows I need it.  Just a mental break.  There is also the knowledge that we do work with him here.

Next Up:  Speech

Our SLP is the bomb.  She is firm but good.  The diligence of this woman and how she thinks outside of the box, for Hunter, amazes me.  We had the same conversation, only this time, I lost my composure.

She quietly asked if I wanted to go to another room and then I just sat there and cried.  The kindness this woman showed me humbles my heart.  As she said, “I even buy the good tissue for moments like this.”  LOL.  Another God-fearing woman in this facility.  She walks it and talks it.

We talked about what the OT and I talked about and she agreed.  Again, we are going back in January, but she knows that I’m so tired.  We have worked so hard and the ebbs and flow of ATLD1 is just a beast.

Tony Stark

Last up, is PT.  Tony…I am his fangirl.  He is simply the best PT we have ever met and we have met several.  Tony Stark is not his name, but that is the name that Hunter gave him from day 1.

He is our Ironman.  He has let me sit and cry, while he plays music in the background.  I kid you not.  We have brainstormed, tried new techniques.  I’m not afraid of his suggestions and he is open to mine.

Tony has taught me a level of patience I didn’t think existed.  He loves Jesus, his wife, and his boys.  He loves theatre, music, acting, dancing and his talent for working with his patients is amazing.

Again, he agreed.

horse therapy

Coming Soon

Well, January to be exact.  We are taking a break from our 3 hr per week therapy sessions.  In January, we will come back, retest and regroup.  I am hoping to be refreshed.  Hunter will *almost* be 5 by then.  I’m hoping that he will have gained some weight, as well.

Until then, we are going to be going to Cassidy’s Cause.  It is a Horse Therapy in our local town.  As Jesus would have it, Hunter will get to be in the same class as his sister.  He will get to see her, his brother, and his Mamaw.  There is a strong possibility that his Jojo and Papa will be there too.

Our big kids get to go and volunteer so this will be an all-encompassing family outing every week for an hour.  I’m thrilled at how this will help Hunter with his core and strength.  It will also strengthen the bond between siblings, grandparents, and great-grandparents.

Kick Some Butt

When he comes back to his Power of 3 team, in January, he will kick some butt!  He will show the doctors that he will grow, succeed, and beat this terrible condition.  God is good.  I’m so blessed with the people that have come into my tribe to help my boy.  Until then, we do horse therapy and watch how his ataxia improves.

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Prepare for Rain and Blessings

Prepare for Rain and Blessings

While I prepare my “fields” and the blessings that will come, I can finally say:

“Okay, Lord…I get it.”

Therefore, I’m preparing for rain.


This mountain IS moving.

In fact, it HAS moved.

God.  Is.  Bigger.

Now, my job is to thank You for what You have ALREADY DONE.

Amazingly, Hunter has been healed.

But for now, we wait for that healing to manifest in his body.

His healing is finished and complete because he is created in the image of Christ.

Now, I prepare!

A Twinge is in the Air

Faith Like Potatoes

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Fall is Finally Here

Fall is Finally Here

Fall is finally here and guess what?  It brings the rain.  That’s okay, we need it and I love a good gentle rain with a nice breeze.

Waking UP is Hard to Do

This morning, I woke up with a start.  I never heard Hunter make all the sounds that Hunter makes when he is up. Going to bed too late, taking 2 Aleve for a toothache, and the rainy day made me oversleep.

When I looked at the clock and it is 10!  Next, I turned over and saw Hunter staring at me.  Then, I turned back over and Big Daddy was still in bed, with his breathing machine on.  I had a brief moment of panic.

Then I Realized

It was Saturday.  We had nowhere to go, nothing planned, nothing to do.  Hunter did not necessarily need a nap, so allowed my body to relax again.  Big Daddy got up with Hunter and I fell back asleep.

This time, I woke up at 11:30.  It was really nice.  Well, that part was nice and then I had a meltdown.  Hunter came back upstairs to snuggle.  I realized, as he lay next to me, his body was shaking.

My Heart Began to Ache

We have done all that we know to do.  He has a Neuro that says nothing can be done.  There is a “movement” specialist, who just wants to observe him.  The FL dr, who is so expensive (but worth it).  Then there is the Amish dr who prescribes these horrible tasting herbal remedies.

Let’s not forget the Theratog, the weighted vests, the special diet, the vitamins, the chemo, the IVIG, and the ACTH.  That would be awful to forget those things.  We have had him prayed over, blessings released over him, people come over to pray for him.  There are strangers who see him out, ask his name, and say they will pray for him.


God does not move.  Maybe He is moving and the flesh of my eyes just cannot see Him.  All I see is shaking.  I see him falling.  Him wanting to feed himself, but can’t.  My eyes move to him trying to get a drink and blooding his lip because he shakes so badly.

I do not see God moving.  Maybe I’m not looking hard enough.  Selfishness, maybe I’m selfish because I desire him to live a normal 4-year-old life…yet he doesn’t.  Lack of faith could be an answer for me.  Hunter has faith, I know that.  There are people around me who have faith, but maybe I lack it.


I have to remind myself that I may not “see” God moving.  Somewhere, though, He is because that is His promise.  Refocusing is what I need to do.  I do not see the wind, yet it is windy today.  I can go outside and *feel* the wind on my face.

That could be it.  I need to *feel* Him again.  Anger has hardened me, in some way.  It makes me not want to feel anymore because not feeling is easier.  Emotionless, that is how some people describe me.

What You Don’t Know

Is that I’m overly full of emotion.  I just don’t show it to every Tom, Dick, and Harry that passes me by.  Emotions are kept close to my heart.  When I feel safe, I can release them.  Most of the time, I do it alone.  Just me and God, having it out, lots of yelling (mainly by me).

Occasionally, Big Daddy will catch a glimpse.  Rarely, do my kids see it.  They have enough of their own stuff, in dealing with Hunter’s condition.  I will not let them see me lose my crap.  My job is to comfort them and encourage them.

New Season

A new season is upon us.  I’m excited.  The cool, crisp air of fall is my favorite.  I can still picture, driving up my grandparent’s hill, seeing Grandaddy sitting on the porch.  He’d have his jacket on, with the collar pulled up and his hat pulled down.  His eye would narrow on the cars that were passing by beyond the hill.  He loved the fall.

The old is passing away and it gives everyone a chance to just rest in the quietness of life.  Then, with spring, comes new life and new beginnings.  I encourage you all, to bloom where you are planted.  Where the Lord plants you is created perfectly for who you are and what He has planned for you.

Look Deeply Into My Eye

Look Deeply Into My Eye

On the Road Again

Here we go, back to the Amish Iridologistso he can Look Deeply Into My Eye.  As we travel back to Hestand, KY, we meet up with Dr. Reuben Schwartz.  I’m so thankful that the trip is not too long, about 4 hours.  I had packed Hunter’s bag the night before.  We had the staples, of course.  I had a few pullups, wipes, a baggie, some extra clothes, 3 stuffed animals, a banana, some gluten-free snacks, and 2 movies.  I had told the kids to do their chores before bed, to prevent yuckiness in the morning.  It was also required, that they all bathe cause…well, they are kids and they smell.


Once morning rolled around, kids ate quickly and got dressed.  We hoped in the van and once we were on the interstate, we popped in a movie.  Big Daddy drove, I slept, kids watched a movie.  It was a good set up.

Due to the MASSIVE amounts of road construction and the fact that Dr. Reuben is out in the middle of nowhere (quite literally), we were 15 minutes late.  They were waiting on us because it was inching closer to dinner time and they do not miss their dinner.

His son was there to help, so he took the boys to one room and I had Hunter and Grayce with me.  Mr. Reuben did his thing.  He got his little crucible and his utility flashlight and he edged all up in my personal space.  The man smells like Melaleuca and love, I kid you not.  His eyes are bright, his clothes are fantastic, and his white beard with those piercing blue eyes…..oh, and that smile.  He is so engaging and friendly (and honest).  It has been such a joy getting to know him.

The Results are In for the Kids

G:  He said her “rages” were because her left ovary was not very nice LOL.  He saw, in her eye, the issue she has had since before she came to us.  He even found her pneumonia that she had before she came to us.  Apparently, there is scarring from it.  Her thyroid is causing her weight to be out of control and stress.

N:  Stress, thyroid, adrenal gland, digestive system, and drink more water!

D:  Stress, digestive issues, and heart issues.  This is probably a biological factor, as Dr. Reuben’s son asked if we had heart issues.  We had to, quietly, explain our family dynamics.

J:  This boy.  Well, there is stress, digestive stuff, not enough water but he was told to “lay off the sodas.”  We laughed and said that he doesn’t drink anything but water and milk.  They see pre-diabetic stuff going on in him.  I had to have Dr. Reuben look at him because I told him Ethiopians do not have diabetes and he is only 12 and something wasn’t seen correctly.  Reuben saw the same thing, so we are going to be making a follow up with his pediatrician to check his blood work.  Mama is not even playing.

Big Daddy and Me

Big Daddy:  He asked him how his joints were (collective laughter as we all know how bad his knees are).  He asked him how his stress was, he nailed his thyroid, the fact that he does not drink enough water or that he eats too much red meat.  He also laid out the issue with his heart.

Me:  Once Dr. Reuben got all up in my stuff, he slid on back in his chair and said: “good grief, you are under tremendous stress.”  I told him I was fine and what made him think I was stressed.  He laughed and said, “your eye is telling me you are under stress.”  I told him of my past 2 weeks where every night, I have been consumed in pain.  I either start vomiting or have diarrhea.  He said that it was straight up stress.  He said we needed to calm my body down.


I find it eye-opening that all my kids (and us) had stress show up in their eyes.  This past year has been nothing but a stress ball for us.  I don’t think I have considered the effects of Hunter’s condition has had on the children.

How sad, as a mom, I did not recognize that.  We are all going to have to sit down and have a family meeting to address this.  Our family may need to step back from the few things that we do, in order to see to the mental health of our crew.

I know that I have a lot going on in my life, I mean I have 7 children.  There are many irons in many fires.  The anniversary of my Lady’s death is coming up, my house is in disarray because we are painting, my room is a nightmare because all my living room belongings are not upstairs, Hunter is not getting better, school, issues with a family member that is breaking my heart.

I have to step back.

It really is that simple.

Now, how to do that…



The Ache of Reality

Before He Got Sick


The Ache of Reality

The Ache of Reality


2017. Over. It. After a treatment.

2017. Over. It. After a treatment.


I find myself, lately, with the ache of the reality of what surrounds our family.  Literally, my heart physically hurts.  There are moments when I see myself going about my day.  Then, all of the sudden, tears begin to flow freely.  I am not in control of this onset of emotions, sadly.  If I were in control, I’d stifle those suckers in an instant.  It is uncontrollable and unexpected.  I do not enjoy these moments.
Hunter is better, for the most part.  He is still walking, most days.  There are some foods that Hunter can feed by himself.  There are days when he can hold a pencil (with assistance).  On a good day, Hunter can sit on the potty (almost by himself).  All of these things, he can do part ways.  Also, there are things he can do, all the way, occasionally.  Every day is a day and every day is different.  I never know what to expect day in and day out.


What spurred these emotions on was sorting through my external hard drive, one day.  I was organizing the 10s of thousands of pictures that I have had since 1994.  As I was looking through my photos/videos of 2015 and 2016, I began to feel a heaviness.  See, in November 2015, Hunter moved in with our family.
He was “normal” that morning, on June 6, 2017.  Then, after lunch, he took a nap and our lives forever changed.  I can remember calling my sister (his Mamaw) and saying “Kim, there is something wrong with the baby, he can’t walk. We are headed to the ER.”  She met us there.  From that moment on, it was a whirlwind for the next 2 weeks.  I had almost 2 years of him being a healthy, typical, little boy.
Those healthy days, I don’t remember.  How sad is that?  He does not remember it either, that is even sadder to me. This realization cuts me to the core because I do not know what our future holds, on the flip side, I do know Who holds his future.  It can be so scary to even think about.  Will he ever walk without assistance?  Will he ever feed himself?  Dress?  Do schoolwork?  Go to college?  Have a family?  Hold a job?  I know, I know, he is only 4.5 years old…but time marches on, now doesn’t it.
I find myself questioning God and the why’s of it all.  Hunter had already endured *so* much in his little life before he came to us.  He saw so much hurt, pain, violence, neglect and now this.  Why can’t he just be?  Why can’t he just live a normal life?  What more does this baby have to go through?
Then, I hear this one question rolling through my mind, like on a carousel.

“If I never heal him, this side of heaven…will you still love me?”


That question is so easy, yet so hard.  It is easy because, of course, I will still love Him.  He is my Savior and my foundation.   The knowledge that He is my Alpha and Omega is overwhelming.  I want my son to be healed, this side of heaven and to be okay.  I desire to see him have a full, healthy future.  Reality is, is I don’t know what his future holds, and it makes me angry.
Anger is secondary to fear and sadness.  I fear that I will lose my son.  There is fear of people making fun of him, him getting hurt, or having to go back to the hospital.  I am sad because there is no treatment.  There is no medication, no protocol, no help, or knowledge available.  Fear and sadness could overwhelm me if I allowed it too.  In having a propensity to depression, I have to be so mindful of my mental state in all of this.


I’ve been super angry with Jesus, through all of this.  The love for Him has not changed, but I am mad (remember, fear/sadness).  Last night, we had a meeting…Jesus and me.  This meeting happened after Big Daddy prayed over me and I was fixing to go to bed.  There was a lot of yelling going on, mainly (entirely) by me because I had to get this all out.
When I came out of the bathroom, I saw my very still son, sleeping peacefully.   I sat by his bed and held his little hand.  There were no words spoken and no thoughts in my head.  I just sat there in silence staring at him, holding his hand.

The Floodgates Opened


There was so much that was said, so many tears that fell, and finally…peace.  I can officially say, not just with head knowledge but with heart knowledge, that I will still love my Jesus.  Hunter, just being alive, has brought together our family in a way I never dreamed it would come together.  Our tribe has come together and rallied.
There is a relationship between my brother and me.  That never existed before.  The love my brother has shown my baby is mind-blowing.  My sister and I function as a unit instead of separately.  That began before Hunter even moved in with us, but has grown stronger by the day.  My other sister has faithfully helped through providing pull-ups to being a massive prayer warrior.  My parents…I can’t even.  The support and love that has been shown effects every fiber of my being.
Hunter has shown people perseverance in the face of pain and uncertainty.  When he smiles after IVs, chemo, IVIG,  ACTH shots, after traveling for hours/days, and extended hospital stays, it melts your heart.  There may be a moment when he cries but then he tells whomever “thank you.”  Amazingly, he has shown grace through his misdiagnosis’ and he has shown tenacity in his ability to compensate for his deficits.


It has been prophesied over me, my family, Hunter’s healing.  I have learned that, in Christ, Hunter is completely healed.  The power of my words and the words that surround Hunter are just that…powerful.  I can hear the medical truth, yet still know that he is healed.  The Holy Spirit, in me, allows me to pray and thank God for the healing He has already done for Hunter.  HOPE is the key word in our journey.  I have HOPE in the circumstances that we are going through.  This HOPE can only be found in the arms of my Jesus.
I’m thankful for the people that speak that healing into existence.  That healing is Truth from the Almighty.  They remind me of what the Lord has shown them and they tell me.  These are the words that I need to hear because they come when I feel like hope is dwindling.


As we were snuggling in bed, last night, I asked him if he was going to be better.  I didn’t allude to his illness or anything else.  I thought he would respond according to his behavior because it has been less than stellar.  He looked up to me and said “Yes.”  He said, “I’m going to stop shaking.”
Hunter has hope. Therefore, I have hope.  We know Whom our HOPE is built on.

My Hope is Built on Nothing Less

My hope is built on nothing less
Than Jesus’ blood and righteousness;
I dare not trust the sweetest frame,
But wholly lean on Jesus’ name.
On Christ, the solid Rock, I stand;
All other ground is sinking sand.

When darkness veils His lovely face,
I rest on His unchanging grace;
In every high and stormy gale
My anchor holds within the veil.
On Christ, the solid Rock, I stand;
All other ground is sinking sand.

His oath, His covenant, and blood
Support me in the whelming flood;
When every earthly prop gives way,
He then is all my Hope and Stay.
On Christ, the solid Rock, I stand;
All other ground is sinking sand.

When He shall come with trumpet sound,
Oh, may I then in Him be found,
Clothed in His righteousness alone,
Faultless to stand before the throne!
On Christ, the solid Rock, I stand;
All other ground is sinking sand.

Related Posts:


A Breakthrough in Letting Go

Making Peace with the Past

Where to go From Here

Iridology = Yes Please

Iridology = Yes, Please

Iridology:  Reuben Schwartz

Thought I was done with the “out of the box” thinking.

Think again!

When you tell a mama that your baby has a progressive degenerative genetic disorder, that you cannot explain, and there is nothing they can do.

Think again!

Our first “out of the box” care was in Florida.  I met a tremendous team led by a wonderful, Godly man.  He did things that I have *never* seen before and I was floored.

Because I am a woman of doubt, I had him do his “magic” on me.  He nailed everything.  He knew nothing about me but my name.

I can’t even.

Healing began for Hunter and for me that day.  Our minds and our bodies were going to be healing from the inside out.  This was going to happen DESPITE what conventional doctors have said.

Now, bear in mind, NEITHER of these men wanted us off our conventional meds.  In fact, that stressed how important it is to follow the instructions of our regular doctors in regards to our health.

That being said, if God chooses to heal us from the inside out…then we may not need those other meds.

If you are seriously interested in the treatment/care we received in Florida, please fill out the contact form.  Send that to me, along with, your questions and I will get back to you.

Just sayin’.

Now, 2 months later, and we jet off to a small Amish community in Kentucky.  There, I met Dr. Reuben Schwartz.  He is THE man to see.

The drive was lovely and I have an infinity for the Amish community.  My father in law worked with them, side by side.  He helped them.  They helped him.  The same story is true for my daddy.  He has dear friends that are a part of our local Amish community.

Once I got there, I went too far LOL.  I ended up at a farm (well, there are nothing but farms in Amish communities).  I pulled up and there was a man, in his garden.  He greeted me, so kindly.  I asked him where Dr. Schwartz was and he said that I passed his place at the bottom of the hill.  He also mentioned, he was one of his sons 🙂

We had a lovely chat about my kids and Hunter.  He shared with me that his wife had just had twins and that gave them 9 daughters.

9.  Daughters.

Let that sink in.

When I left, I asked him his name.  He smiled and said “Abe.”  I smiled and said my son’s middle name is Abraham.  I explained a bit of Hunter’s story.  He said his name was Abraham, as well.

One day, I will share my story on the promise God gave to me, through Abraham and how we chose that name to add to our son’s legacy.

Part 2:  Driving back down the hill

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