Category Archives: Ataxia Telangiectasia Like Disorder

Leaving On a Jet Plane

Leaving On a Jet Plane to DISNEYWORLD!!!  After a full year, Hunter’s Make a Wish is finally here!  What a process this has been!  After our trip, I will detail the process, from start to finish.  Tonight…I just sit and think.  I think about all the things that are undone.  There is still a small load of dirty clothes.  Also, Hunter got wet but did not get a scrub bath.  Oh, then there is the “is it liquid or not” conundrum.  I am sitting looking at my kids’ boxes (for their keepsakes) and all I notice is that 2 lids aren’t on perfectly.

Image result for make a wish

Packing

Big Daddy is working on his bag at 10:39 pm.  I’m thinking about the dishes in the sink, getting video/pictures, and do I wear jeans or leggings on the plane?  Oh, one of the kids puked…is it nerves or a bug?  Will he be sick on the plane, get everyone sick…what if it rains the whole time we are there?  Seriously, my mind is swirling.

Over the course of the week, I got myself and 5 kids packed.  Luckily, my big girls can pack for themselves LOL.  In a stroke of genius and Marie Kondo-ing luggage, we were able to get them all packed in a backpack.  Yay!  I have a HUGE tote bag and a weekender.  Big Daddy has a duffel bag.  Our “checked bag” is full of just extra things and liquids LOL.  We are also checking an empty bag for souvenirs, per the advice of many other Make a Wish families!

Image result for disney world

Thankful!

I am very thankful that my son-in-law is staying at our house.  You know, I am all about safety!  Also, my dear friend is coming to take care of my animals during the day.  I have all the bases covered!

For now, I channel God’s grace on this trip.  I am putting my OCD in a bottle and am going to physically *try* to let it all go.  It is hard to not focus on why we are there, sometimes.  I will not do that, this week!  We are not going to stress and we are going to have a great time!

Prayers are TRULY appreciated!

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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.

When Life Gives You Lemons:  Related Posts

We Interrupt This Regularly Scheduled Series

The Ache of Reality

 

 

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.

KNOWING

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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So many good things……sprinkled amongst our trials

Fall is Finally Here

Oh My Word Becky

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.

Yet

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.

Sigh

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.

Preparing

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.

Stress

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.

Reality

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.

Remembering

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.

Anger

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.

Hope

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.

Snuggling

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.

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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

Open Letter to the Public

Open Letter to the Public

This is an Open Letter to the Public.  There are days when it doesn’t bother me.  Yet, there are days when it does.  Believe me, I pay attention.  Also, my son and my other kids…they pay attention.  They all wonder why people are staring or whispering.  It is uncomfortable to watch some of the reactions of others.

I hear the comments, I see the eyes cutting in our direction, and I see people darting to avoid eye contact or communication.  Special needs people are just like you and me.  There are NO normal people in this world.  Some people have visible differences, while some are invisible.

Be respectful.  Be kind.  Realize that Hunter knows that he is a bit different then you are, yet, he is still the same.  He is a little boy who wants to play, laugh, make friends, and have fun.  The shaking doesn’t define him, it enhances him.

If your kids have questions, let them ask!  We are happy to help them understand better.  If the world was full of the exact same people, what a boring place this would be to live.  Normal is simply a setting on a dryer.  Abnormal is the new beautiful!

Did You Even Know?

Add heading

“Did you even know that you were looking at a miracle?”

That statement was said to me, at the chiropractor’s office.  In the midst of my self-imposed chaos, that statement made its way from a gentleman’s mouth to my ears.

I just sat there, with my mouth open and tears flowing.

Not exactly how I had planned my Tuesday more chiropractic session.

But God.

C.H.A.O.S.

CHAOS stands for “Can’t have anyone over syndrome.”  That was my Tuesday morning.  I could not remember who I was supposed to bring to the chiro, so I just brought everyone.

It just seems to be easier all the way around, somedays, and today was a someday for me.  As we all filter in, we are easily identified and signed in without me having to do anything.  Hunter knows the ropes and he has all the ladies there swooning, so he did his whole “hello?  excuse me?  lady?” bit and Whitney comes around the corner and swoops him up.

She.  Is.  Whipped.

Before she took him back to do his “office work,” she asked if she could introduce him to the lady behind me.  That lady happened to be Ms. Whitney’s mom.  However, Hunter is always so syrupy sweet when he meets people.  Amazingly, this time was no different.

Then there was the man

The office is small and it is shared with another doctor.  My kids took up one whole little section, so I went to the other side and I sat by a couple…I would say in their late 60s or early 70s.

I was sitting next to his wife and he leaned around her and looked at me, with this piercing look.  He smiled and said, “did you know that boy of yours is a walking miracle?”

I smiled, choking back tears, and I said, “as a matter of fact, I do.”  He asked me his name.  I told him.  He smiled and said that from that moment on, he would pray for my son.

He knew NOTHING about us, our situation, Hunter’s health.  Heck, we carried him in and Whitney took him, so the man never saw Hunter even stand/walk. I told him a 30-second version of our story.

Tears filled his eyes and he said, “well, I thought he was a miracle before…now I know he is.  God spoke to me about him.  Did you know that God is still a miracle maker and He is alive and well surrounding us.”

I replied with “YES!”

And So It Goes

We chatted for a few minutes before I went up to the desk. Hunter has spied food and he wanted it, but he could not have it because of the gluten.

While I was soothing his soul, I overheard this man talking to Daniel.  Daniel’s behavior has not been very good, lately.  There is a lot going on with him emotionally and spiritually.  It has been a battlefield.

This man was sharing the gospel and asking Daniel pointed questions about his faith and his walk with Jesus.  I just stood there and allowed it to happen.  This man was so filled with the Spirit and he so wanted to share that feeling.  You could see it in his eyes.

His Name

I don’t know this man’s name.  I do not know where he lives or which doctor he was even seeing.  The Lord knew I needed this moment to quiet my C.H.A.O.S. on that day.  He knew my heart needed to hear that a miracle IS coming for Hunter.

The gratitude I feel is overwhelming.  God is good.  All the time and all the time, God is good.

Part 5: *Whatever* May Come My Way

Hope…..my theme word since May 2015.  Hope showed back up on July 8, 2018….B and I were late for church again (let us have a SHOCKER moment), luckily, he left the kids and me off at the door.  That allowed us to find a seat (in front of our favorite humans, Mr. Cliff and Ms. Jan.  While the kids sat down, I scurried Hunter off to his class.  For the purpose of playing with his “brother” and then I could sit in peace for a few minutes.

Well, God is the God of peace, but He also has an agenda.  As sweet Grace was doing worship, she started a song that I had never heard of “Come What May.”  Gracious.

Come What May:

In death and life, I follow You
In every season, this be true
‘Cause I chose this path and I made this vow
And I will never turn around

Nothing can hold me back from Your love
I’m following You, Jesus
Whatever may come my way

To live is Christ, to die is gain
I give it all for love’s true name
It brands my heart, and now I will rise
To bear the name of Jesus Christ

Nothing can hold me back from Your love
I’m following You, Jesus
Whatever may come my way

Come what may, I will obey
‘Cause I find my joy in bringing You praise

I will obey You, God, whatever man may say 
I stand on promises I know my God has made 
With no regrets in me, my lips will praise Your name 
And though the earth gives way, I will not be afraid 

‘Cause You are the Lord of Lords, You open every door 
You stand in victory, and now my heart is Yours 
I will trust in You, God, and I will not be moved 
When persecution comes, I choose to stand with You

I bolded what stopped me in my tracks.  Again, my head was down, I was singing in my spirit and then when those, unexpected verses (still, I did not know this song) came on…..my body started to react, and my hands were flying up in the air worshipping Jesus.  I almost, just almost, stood on the chair to get closer to God (kind of like southern women who make their hairs real big….the bigger the hair, the closer to God status).

In A Moment

In a moment, I looked over and saw Richie (our pastor) standing by Bart.  He asked if we would be willing to share our testimony about what has been going on.  We said yes, but my mind (flesh) was screaming…I have nothing to say.  I mean nothing is in my head. What on earth?

Things have been tough around my neck of the woods.  Every single child is struggling with something, as are Bart and I.  Our marriage is strained, our minds are twisted, we are feeling very alone, unloved, and with all that is going on……..we still have the massive needs of Hunter.

When this song was over, Richie said that he felt like the Lord was leading him to ask us to speak because man is telling us so much…yet we are trying so hard to seek His face.  There are days, when I seek His face, with my eyes shut.  You know, when children play hide and seek…if their little eyes are closed, they can’t see you and you can’t see me, but we can turn our heads to a voice….that’s kind of like the life we all had been living.

The Baseball Cap…Let Hope Arise

Hope

Finally, we have answers to our medical questions, in regards to Hunter.  Yet, his doctor is still trying to get us to nail jello to a wall.  First, he has strep, then he has Cerebellitis, then there is the diagnosis of OMS (Opsoclonus Myoclonus Syndrome), next is possibly has SCA (Spinocerebellar Ataxia). In the end, he has 1 copy of the MRE11A mutation on gene 11, which correlates with ATLD1, then he has degenerative ataxia of unknown etiology.  Blah blah blah blah.  I am SO sick of listening to the voice of man dictating every aspect of Hunter’s life.  Sick.  Of.  It.

As we got up there, we made it through the testimony….only to be blindsided by a baseball cap……

 

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