Adoption, Family, Homeschooling, Medical

Oh My Word Becky

Oh. My. Word, Becky

Rainy Days

Oh, my word, Becky, it has already been a day and it is only 2 pm.  It has rained all weekend, and that is not a bad thing.  Well, the flooding part is not great, but the rain was much needed.

I love listening to a gentle rain on our metal roof.  The sound makes me want to just stay in bed and snuggle up with a warm cup of chicken broth.  Alas, this was not what my day entailed.

Therapy

We (meaning Hunter and me) had to get going to therapy, this morning.  OT, SLP, and PT is about 35 minutes away, so we had to hustle.  With the rain, it is hard to hustle because, at some points, I could not see the road.

He did really well, in therapy.  I got teary watching him struggle, though.  It is hard for me to think that this is the only life he remembers.  He does not remember being a healthy, busy toddler.  Shaking, compensating for his shaking, that’s what he remembers.

I had to call it a day during PT because he began drooling.  Drooling is a sign that he has overdone it and that his body is fixing to shut down.  Once the drooling starts, the belching begins and then we are done for the day.

I hate this condition.

Coming Home

Heading home, I decided I would stop and get him lunch.  It was already afternoon and he had had a couple of peanut butter power bites, but he was hungry.  I stopped by Burger King and prepared to get him a salad (his choice) but at the last minute, he wanted a burger.

He ate the burger and my fries, on the way home.  I had forgotten his sippy cup so he could not have his juice.  He can’t hold those little packets of juice to his face, squeeze and drink at the same time.  That is just too much for him.

How sad is that?

Once Home

Kids are doing their schoolwork, though one of my children “forgot” that he lied about doing some work, from last week.  Now, I grade everything at the end of the week, except the Bible.  That, I ask where they got too and they tell me.

This particular child stated that XYZ was done, so when I asked him again today (to make his new schedule), he suddenly realized that he lied to me and now he is backtracking in a  big way.

So, he sits, thumbing through his Bible to see where he actually stopped and how big of a lie he decided to tell me.

I can’t even.

Shaving a Cat’s Butt

In the midst of Lie-Gate, I decided that Karole (our cat) needed her butt shaved.  She was getting a bit unruly and since she is older than dirt, she smears on her fur.  I really just wanted to make a safe exit from point A to get point B on the mat without smearing it from here to high heaven.

Have you ever shaved a cat’s butt?  It was not one of my best moments.  I have a kid crying because he needs someone to feed him his applesauce, one kid crying because they lied, one rushing through and washing every dish known to man (I have no idea why), and one jumping up and down because they lost 1 lb…then, there is Karole, her butt, fur flying, and a turd smeared.

Good times.

In the Midst

I received a sad email from my niece, my youngest son’s biological mom.  Broke my heart.  My heart is heavy for one of my nephews.  I am missing my Lady like crazy and her one year anniversary is sneaking up on me.  Plus, there is supper to cook, things to put back on my wall, baseboards to paint, a house to clean, and so on.

For now, I will finish shaving the cat’s butt.  I am having said child reread what he already “read.”  I turned the diffusers on, so my house may be dirty, but it smells good.  I will delegate the paint of the baseboards to Alyssa when she gets home.  There is an email that I will be sending to my niece and prayers that go up for my nephew.

I will wipe the drool, wipe my tears, love my God and trust that His ways are higher than my ways.  There will be no running down the road naked, screaming at the top of my lungs.  Not today, Becky, not today.

Lasagna Soup

Cheeseburger Soup

 

Adoption, Everyday, Family, Inspirational Thoughts, Medical

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.

Medical

Look Deeply Into My Eye

Untitled Design

On the Road Again

Here we go, back to the Amish Iridologist.  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…

 

 

Adoption, Family, Inspirational Thoughts, Medical

The Ache of Reality

The Ache of Reality
2016. Eating Out. Before he got sick.
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.  I find myself going about my day and then all of the sudden, tears begin to flow freely.  I am not in control of this, 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.  He is still walking, most days.  Some things, he can feed himself.  There are days when he can hold a pencil (with assistance).  On a good day, he can sit on the potty (almost by himself).  There are 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.  I was looking through my pictures/videos of 2015 and 2016.  In 2015, Hunter moved in with us in November.  He got sick on June 6, 2017.  I had almost 2 years of him being a healthy, typical, little boy.

Those days, I don’t remember or a time when he was not sick.  This realization cuts me to the core because I do not know what our future holds.  It is 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 has 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…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.  Yet, that love comes at the sacrifice of my son’s health and possible continued deterioration.  I want my son to be healed and to be okay.  It is my 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 can 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.

Hope

It has been prophesied over me, my family, and Hunter that 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’ve been super angry with Jesus, through all of this.  The love for Him has not changed, but I am angry (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.

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 knowing that I will still love my Jesus if Hunter never is healed.  Hunter just being alive, has brought together our family in a way I never dreamed it would come together.

He 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 long 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.

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 and we will love Jesus, regardless of if He heals him on this Earth or if He heals him on the other side of Heaven.

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.

Everyday, Medical

Part 1: 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

Inspirational Thoughts, Medical

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.  Hunter is always so syrupy sweet when he meets people.  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 was called 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.

Cooking, Medical

Relearning How to Cook After 30 Yrs of Butter

 

Eat Bark, call it chocolate

No More Bark for You

I always joked my sister has nothing but bark, twigs, and grass blades in her house.  There was no bark at my house.  Her kids loved to come here and eat things that were not healthy.

I’m a good aunt like that.

Relearning how to cook is like trying to crochet a blanket, underwater, for a seagull.  It is not fun.  I do not enjoy it.  Change is not cool.

But.

I love my son.

During our time in Florida, we learned that Hunter has *several* food allergies.  Things I have cooked with since the beginning of time, I can no longer use.

Off Limits

Garlic.

Beef.

Dairy.

Eggs.

Gluten.

Nuts.

I just put a 500 lb cow in my freezer.

The one thing I season my food with (my lovely seasoning mix), I can’t.  I love garlic.

Dairy.  Goodbye love of cheese and adding cheese to every single dish.  Every.  Single.  Dish.  Butter.  BUTTER.

B.  U.  T.  T.  E.  R.

When I make soup, 98% of them have heavy cream, sour cream, cream cheese, cheese, milk.  How will I make soup????!!!

Chicken bouillon?  Gone.  Beef bouillon?  No Bueno.

No.  Chicken broth with cream of chicken soup, butter, heavy cream, garlic, and cheese.

No broth people of internet land…..that hurts.

Bread, pasta, my heart, and soul in eatable form.

Nuts, I can take them or leave them.

I am still going to cook.  Relearning healthy ways to cook will create good habits in my children.  Hopefully, we will lose some weight (well, Big Daddy and me).

This change will be good for Hunter.  It will calm the inflammation down, in his brain.  By calming that inflammation down, I hope that his progression will continue.  His health is number one, right now.

There are still some things I will cook, normally, but adjust for him.  Be on the lookout for lots of hits and lots of misses in my new recipes.

It’s all about the journey, right?

Adoption, Family, Inspirational Thoughts, Medical

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, next is possibly has SCA. Un 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……