Family

Happy 84th Birthday, Lady

My Lady and Me

My Lady began calling me Ramona as her mind came in and out.  She also referred to herself as Stacy.  We got tickled when she came back around, and I would tell her.  I loved to cook for her, for her birthday.

It overwhelmed her having all my kids in her house, surrounding her table.  She would sit, talk, laugh, and just absorb those crazy moments.  Her eyes would dance and sparkle as she helped my kids with different projects, while I cleaned the kitchen.

She also enjoyed us taking her out to dinner.  She and her boyfriend (Bart) would put me in the backseat, and they would hang out in the front.  They solved the world’s problems.  They loved eating fish, together.

Bart would surprise her and bring her flowers, every once in a while.  She loved him for that.

I miss her laugh.

The thought of her singing, with her beautiful voice, makes my heart rejoice.  Her wisdom is something that I will hold onto forever and a day.  In this picture, she had just turned 80.

She wore my FAVORITE shirt.  Red was my favorite color on her.  She loved the water (as they owned a houseboat for a long time).  This shirt just was the epitome of what she liked and what I loved.

I would love to be sitting in her room, in my green chair and her in her leather chair.  I would love to be at that table again.

There are many times, I sat, in that chair and at that table, with my head in her hands while I cried and she prayed.

I miss hearing her praying over me.  Her guidance.  Her forthrightness.  I miss every single part of her.  Everyone needs a Lady.

Today is her first birthday that she is celebrating with Jesus and her Jerome.

I miss you more today, then I did yesterday.

Until I see you again.

I love your face off.

 

Family, Inspirational Thoughts

Part 4: A New Day, A New Diagnosis

History of Hunter’s Diagnosis

It is a new day and a new diagnosis for my fella.  Dancing around truth (aka no one knows anything LOL).  This is a small snippet of Hunter’s diagnosis’ and what all he has been through to get to where he is.  So many months, so many procedures, so much medicine…..and now we have yet another new diagnosis.

June 6, 2017…..Life changed while he was sleeping. Hospital 1:  Lots of blood tests and urine tests.  Diagnosis 1:  Strep.  Antibiotic.  Go home.  He will be better in 10 days.

June 7, 2017…..Hospital 2:  MRI, blood test, urine test.  Diagnosis 2:  Cerebellitis.  Viral.  He will be better in 2 weeks.

June 8, 2017……..Hospital 3:  MRI, Xrays, Ultrasounds, Lumbar Puncture, EEG, blood test, urine test.  No clue.  Degenerative Neurological Disorder.  No clue as to what to do.

June 14, 2017…..Diagnosis 3:  Opsoclonus Myoclonus Syndrome.  High dose steroids, first dose of IVIG.

1 week later…chemo.

2 weeks after that…chemo

Monthly IVIG from then until April 2018.

Chemo 2 x after that.

ACTH (high dose steroid shots) from Dec 28, 2017-Feb 27, 2018)

More blood work.

April 2018….Hospital 4 to confirm dx of Hospital 3.  Fearing neurological degenerative process.

A week later…admission to hospital 4 for repeat of tests done a year ago.  MRI, Xrays, Ultrasound, Lumbar puncture.

Final dx from Hospital 4:  OMS

May 2018….Hospital 3 neuro says there is a good chance it is not OMS, but Spinocerebellar Ataxia.  Degenerative.  Neurological.  No cure.  No treatment.  It is genetic.  bloodwork.  He had not been walking up to that point.

A New Day

June 2018….unconventional treatment.

5 days later….he is walking on the beach.

July 2018….not SCA, final diagnosis:  1 copy of MRE11A mutation on chromosome 11.  Ataxia Telangictasia Like Disorder.

Then we have blah blah blah……..

He has been through so much.  Physically, mentally, emotionally.  He is exhausted.  We are exhausted.

I’m so sick of man and him telling me what is this, what is that, they don’t even know.  These drs have never seen this.

The things I know FOR SURE:

1.  He does not have Friedrich’s Ataxia.

2.  He does have a mutation on his MRE11A chromosome 11, which is ATLD.

3.  I cannot get a straight answer from anyone.

4.  We have good days and bad days.

5.  I am an EXPERT on my son and I will NOT waiver for life for the pride of another dr.

6.  He is cute.

7.  Best.  Smile.  Ever.

8.  He is also a turd.

9.  I will not compromise my faith.

10.  God.  Is.  Bigger.

48 Hr EEG

My Iron Man

This book on faith was written by a lovely woman that I knew when I was growing up….I encourage you to read this book.  It is an easy read and her faith, during her trials, is something to behold.

Colla Ro

Family, Medical

Part 3: Meet My Okapi

As we were finishing up an “unconventional” treatment plan for our son, we decided to give our family a bit of respite.  When you have 11 people in your immediate, your feet are under my table for food, family….everyone is going in a different direction.  We have one struggling with depression, one planning her life, one who can’t keep her head above the waves, one who is ready to launch his lead, provide, protect mentality, one who…as the years go by….the deficit and valley gets larger and larger, one who is stepping into puberty, and one who can either walk or not walk based on any given day and circumstances.  Add that to a mentally exhausted mama, overworked daddy and a strained marriage…..we *all* needed new scenery.

5 days after my son’s treatment….this happened:

When you see your son walk, for the first time….unassisted….in MONTHS.

You CHOOSE to give God the glory because He is the only one who deserves it.

God is writing Hunter’s story.  He has been writing since before He created the Earth.

I just get to sit on the sidelines and enjoy the view.

He has all the provisions, in place, for Hunter and what he is dealing with and the all trials that he is currently going through.

God is good.  He is faithful.

Our family will heal……….our son WILL heal.

 

Family, Inspirational Thoughts, Medical

Part 2: Have You Ever Tried to Nail Jello to a Wall?

 

It is *so* easy to praise God when all is good in the world.  When things are running smoothly and all things are moving and grooving in a good flow.

You and your family are sitting around a campfire singing Kumbaya…….

Then, you see your fire starting to go out and it is getting cold outside and you are frantically searching for anything and everything that you can burn to get that groove back.

Before you know it, a bird flies overhead and he pees on your ember.  Your flame is gone and you are sitting there…cold…in the dark.  You think it can’t get much worse but you have eaten that last s’more.  No heat, no light, no food…..doable, sucky, but doable.  Then the monsoon hits and you feel like you will never be out of this space and your fire will never come back.

That is how I have felt in this last year.  Our official clinical dx was made…there is not definitive test you can do, no amount of MRIs, LPs, blood work, X-rays, EEGs….nothing can officially say this is what you have…it is a combination of symptoms and what they equal up too.

Opsoclonus Myoclonus Syndrome was 1 in 10 million….it may be more like 1 in a 100000 now, I’d have to look.  Once this dx took hold, I did TONS of research.  I joined a wonderful online support group and I received encouragement and a wealth of information.  We started high dose steroids, while hospitalized.  We also started our first, of many IVIG treatments.  The IVIG was done monthly.  Closely following coming home (in the hospital for about 12 days), we start Rituximab (a type of chemo).  The total on that was about 4 treatments.  Since those were not working, we moved to add in ACTH.  This is a dose shot that we gave him daily.  It is another type of steroid.  We did this for about 3 mths.  All this did was MAGNIFY his rages, insomnia, and severe OCD tendencies.  My sweet little boy was…………….not there anymore.  He was like a raging animal that constantly stayed in a fight or flight mode.

In that time, my frustration overwhelmed me, so I contacted an OMS specialist in LA.  She answered so many questions and her openness, honesty, forthrightness, and in my face wording helped me so very much.  I also, physically, took Hunter for a second opinion at yet another children’s hospital.  Dr. Lightner was a breath of fresh air, though I did not care for what all she said.  She felt that this was more progressive (she did not see the ocular flutter which, to her ruled out OMS).  She wanted to run all the tests all over again (which it had been a year and we were going to have to do that with his regular neuro anyway, so we allowed that).

All tests came back the same and while he was at the hospital, the ocular flutter reappeared which made her believe that it was OMS (confusing I know).  So, in the end, we felt confident in this “clinical” diagnosis.  She said, in her opinion, she would try the protocol again, but that is something I needed to discuss with our regular neuro, as she was just confirming a diagnosis.

In the medical field, a ZEBRA means a very unlikely diagnostic possibility. It comes from an old saying used in teaching medical students about how to think logically in regard to the differential diagnosis: ‘When you hear hoof beats, think of horses, not zebras.’  Hunter was not a horse, we THOUGHT he was a zebra……

Then, we discovered that he is NOT a zebra….he is an Okapi (incidently my all time favorite animal).  They are incredibly rare.

Image result for okapi

Family, Inspirational Thoughts, Medical

Part 1: A Journey of Healing

I will be posting our story in little mini parts.  In these parts, I’m going to share the songs that have spoken to me, so very much, during this season of my life.  Also, my theme Scripture that does *not* escape me.  Also note, that I will only be talking about this last leg of our journey, as we stepped out of our finite “reasonable” box and stepped into infinite faith.
This is all very hard to explain without sounding like I live on another planet, so just trust that God is good even when we don’t understand, even if this is possibly temporary, even when it sounds impossible.  With Christ, all things are possible.
HOPE….the Lord has added to this post, but here is a taste of what the Lord has been showing me.
Several years ago, my friend shared the story of her daughter’s journey with Lyme disease and how this place…this whack-a-doo treatment and faith saved her daughter’s life.  She tried to explain it to me but I had no clue what she was even talking about, so I listened, asked questions, and rejoiced in her daughter’s healing.  I have mentioned this place to several friends, who struggle with some autoimmune issues, and I just put a bug in their ear and then I give them Les’ number LOL.  Take the middle man out of it.  I praise Jesus every January because that is when Les and her family stepped out on faith and tried something different than regular medicine.
When Hunter woke up from his nap on June 6, 2017, our lives changed forever.  You can read about the end of his journey OMS: The Rogue Zebra Has Been Caught .  Now, there are 3 other parts prior to that, if you want to know our beginning to this 3rd diagnosis.  Our first dx was from a local hospital.  In reality, a chigger should not EVER been seen there, but whatever…they dx’d Hunter with Strep, though he tested negative.  “Give him this antibiotics and he will be fine in 10 days.”
Uhm, did you get your degree from a Cracker Jack Box?
He cannot walk.
We left there and immediately drove to a children’s hospital out of state.  We stayed there for several hours and then we got the second dx.  They said he had Cerebellitis.  It is a common dx when a child presents with the symptoms that he presented with.  The dr said it would run its course (virus type thing) and he should be better in 10 day.
Yep.  That did not sit well with me.
So, we made some calls to a friend who worked for a Neuro, then another friend who has boatloads of experience with Neuros because her daughter has TM…we talked to our parents, my sister (Hunter’s gma)…and then we made the decision to take him to a different children’ hospital and see if that neuro agreed with the first neuro.
We came home, spent the night, and then I got up early with H and headed to another hospital, alone, truly thinking this neuro would agree with the last neuro.  Yep, that didn’t happen.
That was the beginning of our worst nightmare…………
Family

Save Me….I’m Drowning….

Image result for suicide prevention

This has been a HARD thing for me to blog about….but I keep thinking if I get out my thoughts, through my fingertips….maybe I can get the images out of my mind.

LA…..we met when our boys were playing baseball when they were about 8.  She had 2 kiddoes.  Our boys are the same age and then she has a daughter the same age as my 5th son.  I remember walking into the baseball park, finding Noah’s team, and then seeing this woman sitting on the top of the bleachers.

She had a little bob haircut and her hair was bleached blonde.  She looked like a baby…way too young to have an 8 yr old and 3 yr old, at the time.  She had on a white tshirt and ripped jeans.  Sitting beneath her was this skinny fella with this awesome mustache and his brown haired wife.  They were all smoking, loud, fussing at each other, laughing, cheering, eating.  My 5th child took a liking to the brown haired lady and every time I turned around, she was giving him food.  I would give Daniel a stern look and she would pipe up “don’t you fuss at that baby, he didn’t ask….he just looked hungry.”

The bleach blonde girl would cackle and I’d just roll my eyes thinking….she is my spirit animals.  Rough around the edges, spirited, funny, family oriented and LOUD.  We hit it off and began an intense friendship of discovery.

LA, through the lens that she saw my life as, was curious.  She was asked a lot of questions about my life, about my marriage, my parenting, my faith.  Her kids and my kids hit it off…..we all hit it off with her parents and her brother.  It was fun, it was crass at times cause that is how the roll….in a vat of sarcasm and love.

We were friends for a total of about 10 yrs….through wonderful ups of leading her to Christ in the park and her dyeing my hair to the deepest of lows with alcohol, drug addiction, and mental illness.  I have loved her through every moment, but there was a point where those moments consumed me, like a fire.  I would stay up late, talking with her and trying my best to pull her into the light of healing.  I was doing the job that Christ needed to do.

What I see now, on the backend of things is that when she fell…..she didn’t eat the bottom of the barrel….she hit my face.  I so loved her and her children and family that I placed myself at the bottom of that barrel, so she never had that opportunity to see Jesus directly.  She saw Him because she loved Him and was His child, but she did *see* Him in that face of darkness and despair.  I wanted the control because I thought I could fix it all and make her better.

My husband had encouraged me to back away….not disappear, not to stop loving, not to stop praying, but I had to allow her to meet her Jesus and find her healing and wholeness in Him and not me.  That was hard.  I met some very dark days, as well.  There were times she would need me and I would rearrange everything to go to her and love her and I would leave my kids and their issues behind.

It is sad to say that reprioritizing my life, submitting to my husband and what I know to be Scripturally correct was letting LA deal with things alone….without me swooping in to rescue her.  My heart was good because I love her so very much and I love those babies so very much, but our friendship was in the way of her relationship with Jesus.  I was a stumbling block.

As the years waned in and out….we would have good laughs at memories, we would catch up with the kids and she started becoming healthier in her mind and other areas.  What proved to me that listening to Jesus was the right thing was when she called me up, out of the blue and said “I need you.”  Mind you this was probably 8 or 9 years into our friendship.  She wanted to come to the house…she needed me and I could hear in her voice the clarity and not that foggy voice of addiction….I told her to come and we would talk.

She walked up on my porch and the swirl of love and respect for each other encompassed us.  It was like a minute had not gone by.  She was clear eyed and had a clear voice and was so very strong.  There was such a strength in her.  She sat down, explained what was going on to Bart and me and we all just sat there and stared at each other thinking “oh crap….what is going to happen and how can we help.”  She needed to talk about an issue with her precious son in a moment of foggyness and the love she had for that baby, regardless of the situation, was written all over her face.

She had forgiven, instantly the things that had happened and was prepared to do whatever she could to help her son get the help he need and she did.  She fought a wonderful fight and she and her mom won.  He received what he needed and though the situation was terrible…..in a stranger’s view….to her…….it was just a moment.  A mistake.  We all make them and he is no different and she loves and believes in him and his sister.  I was so proud of her and her resolve.  I think the only other thing that I was prouder of, was when she received Christ, but this one was a close second!

Now, to see my friend, so desperate, again and I was unaware this time.  The phone call from her mom stopped my world from spinning.  I honestly didn’t believe her until I heard her strong voice crack and I could hear her crying over the phone.  Just typing and thinking about that sends this electric emotion through me and I can’t stop thinking of all the “what ifs”….my last image of my friend was looking at her beautiful face……so calm and sincere, while I brushed her freshly washed hair and braided it, while she lay on that table after she took her life.

I will never get those images out of my head.  Ever.  I will never forget hugging her mom….her son….her daughter…her brother.  I will never forget.  Never.  As I washed her face, brushed her hair, painted her fingernails the perfect color of pink.  I will never forget.

One moment of despair.

One moment of feeling alone.

One moment of being alone, physically.

10 seconds away from her mom and children.

Her life was over.

She met Jesus face to face.

Please…..please please…..remember……

You are NEVER alone.

God is ALWAYS with you.

You are LOVED beyond measure.

Help is a PHONE CALL 24 HOURS A DAY away.

There is always joy to be found somewhere, even if it is so very small….there is still joy.

Please seek help from a counselor, the hotline, a pastor, a friend, a family member.

Please do not choose a path that leaves the family with so many unanswered questions and so much pain.

You ARE WORTHY.

Family

My Nother Sister

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I could get so weepy right about now.

When she is up, I am down.

She picks me up.

When I am up, she is down.

I pick her up.

She is my prayer warrior.

She, most definitely, is my accountability partner.

We are the same person….in regards to I say it and she just thinks it.

She is my Monday chat girl….my on the road chat girl….my in the trenches chat girl.

She is my sister.

I am a better human with you in my life.

I love you more than you know.

Happy 50th Birthday! 🙂

**You’re hot for an old chick, but Kim is older, and Shane is Methusalah level.**