Olivia's journey has been rough - to say the least. Born perfectly healthy, her declining health has always been called a mystery. Fifteen years have come and gone, with no change to the daily seizures that have held our hearts hostage..... until now. Finding HOPE and healing for our girl began with the introduction of Medicinal Cannabis - A controversial treatment for untreatable seizure disorders.

Her story briefly -

At 18-months she developed little "shaking spells" in the middle of the night. Olivia's journey has been rough - to say the least. Born perfectly healthy, her declining health has always been called a mystery. Fifteen years have come and gone, with no change to the daily seizures that have held our hearts hostage..... until now. Finding HOPE and healing for our girl began with the introduction of Medicinal Cannabis - A controversial treatment for untreatable seizure disorders.The Neurologist called them "Generalized Myoclonic Seizures". In many cases this can be the beginning of a degenerative condition, but month after month Olivia “defied” this inaccurate diagnosis by continuing to develop normally. Several months later, after a medical procedure, the little "shakes" became large jerks that would catapult her to the floor. She stopped talking, stopped responding to our voice and appeared have entered her own little world. The seizures continued to change. They soon became "drop" seizures and would come on with no warning and she would fall or crash into whatever was in front or below her. They continued to worsen into classic tonic clonic seizures that would last anywhere between 40 to 90 seconds.

Complexity was the word often used to describe Olivia's condition. We've done our due diligence.....we tried all the medications, none worked. We tried the supplement route through a well-known clinic in Chicago. We then tried the Specific Carbohydrate Diet (SCD), to which the Gut and Psychology Syndrome (GAPS) diet is developed from. We saw such amazing results from this diet we decided to take her off the many supplements she was taking because we didn't think she needed them. Well, we were wrong, and she crashed. Apparently, the supplements were helping her --- it was not a coincidence. It made sense that to get her back (at least to the place before pulling the supplements away), we should just put her back on the supplements -- but it didn't happen that way. The complexity often used to describe her was now ten fold, any change we made "upset" her fragile hypersensitivity to change and her path became even more confusing and "crooked". The Medicinal Cannabis has finally given us a mechanism to control the extreme Neurological Inflammation racing through her little body -- something every anticonvulsant medication failed to deliver on.

Our beautiful girl

Our beautiful girl

As a parent to a severely autistic child who has daily uncontrolled seizures, the memory of her being "normal" has never been forgotten. The hope of helping, if not stopping her daily suffering has been an uphill journey. Approaching her situation from a diet perspective is not an entirely new idea. Olivia was on a version of the SCD diet in 2005 with some success because I never introduced the homemade yogurt, which is the main healing modality. The main difference between then and now is the knowledge base of Dr. McBride and her ability to share the wealth of information she personally gathered as she cured her own severely autistic child with the SCD diet.

I do respect and am thankful for the excellent emergency practices of the conventional medical institution. Their services have literally saved Olivia's life on numerous occasions. Alternative care has taught me so much about the power of your own immune system, and the tragedy that can follow when the immune system is damaged. Why these two worlds can't work together to shape and protect us all is a shame.

This blog is really about our journey over the last 15 years. Although the focus is Olivia and her recovery, I will also include how this has affected our whole family and how we have dealt with this unexpected interruption in our lives.


Hebrews 11:1 -

Now faith is confidence in what we hope for and assurance about what we do not see.

Have a question or comment for me?

If you have a question or comment for me feel free to leave it under the "comments" section on the bottom of each individual post. If you would like to leave a private comment you can email me at kellynjohnson94@gmail.com.
Showing posts with label Faith. Show all posts
Showing posts with label Faith. Show all posts

Sunday, November 18, 2018

Am I a Gomer?

Are you a Gomer? Have you heard about Gomer? No, not Gomer Pyle!😂

I'm referring to the Hosea+Gomer bible story? It's been called one of the greatest love stories of all time. Somewhat simple to define, much more complex to understand the context. It's a symbolic message of a not so perfect marriage between God's prophet Hosea, and his unfaithful wife Gomer.

Their marriage is a symbolic representation of God’s relationship with Israel.

Hosea=God    Gomer=Israel=His unfaithful chosen ones (which ultimately=me+you)

Are you wondering what this has to do with Olivia?

Unfortunately, it has everything to do with why Olivia's life was destroyed. Literally. It's Truth will describe how she can get her life back. Hopefully.

Although I've been familiar with this bible story for some time, I've never taken the time to dive deeper into it's meaning until now. Fortunately for me, it happens to be the study I started this fall --
Hosea: Unfailing Love Changes Everything by Jennifer Rothschild.

Have you ever heard the Bible referred to as the Living Word? I've heard that expression for years and even though this study is hard for some to swallow, I feel as if God has been speaking through it to answer some of the unanswered (unanswerable?) questions I've dealt with (on and off) for the last 18 years.

Like.....why my kid? Or....where are You God, cuz this hurts (and stinks, and sucks and is excruciatingly painful). Or, how about this one......where's Your plan for good here? Or..... is healing for the faithful or the lucky? Or, how about that constant wondering if You see me? Do You see her? Do You see the suffering?

Just those little questions.

I always likened myself as more of a Gilmore Girl......not a Gomer Girl. For all of you who know and love Lorelei Gilmore, you know, and probably can relate, to her flawed coping mechanisms on display throughout the series. You know....that damn independence...or is it self dependence? The mistake she made at 16 and the consequences she endured (even though the worst of the consequences were sadly inflicted by herself). Remember how she ran away? How she isolated herself (and her beautiful mistake -- Rory).  She hid to conceal and protect her heart from the criticism. She went into control mode. She hid from her perceived failure. Her mistake defined her whole life. She became proud. Those darn MISTAKES!!! Sound familiar?

Now, that's relatable.

Gomer, on the other hand, not so much. She's a prostitute. An adulterer. She's portrayed as a willful participant in her unfaithfulness, but is she? Is she willful or is she blinded? Her history mentions the sins of her father.....whose fame seems to be his promiscuous nature... like father, like daughter. Her history is telling for all of us. We inherit more than our genes from our parents. We inherit habits, both good and bad. We inherit behaviors, thinking patterns and wellness habits. Most of all, we inherit "learned" belief systems, whether they are true or not.

There is so much depth in the book of Hosea. Entire sermon series and bible studies dive deep into the riches of truth and wisdom contained within these pages. I will only be focusing on what I believe is the lesson for me at this point in my journey with Olivia. God speaks to each of us individually, and what I get out of these scriptures may be drastically different then what you may see. For me, the role of scripture is to learn about God's character and to apply the obvious life lessons that are so richly taught in this accurately named.....Living Word.

Within the book of Hosea, we see God's anger as His people turn away from Him to worship other gods and idols. Their unfaithfulness to Him. It's a book about people wandering.  Wandering away, not towards their God in Heaven. Step within, and soon you'll learn more details of the consequences to blind faith and inherited beliefs. They will hit your blindfold smack dab in the middle.

We are introduced to phony religious leaders and learn the dangers of a "copy cat" religious system set up by man. It details how these men seek to replace Him. Worshipping golden calves as a core belief system in their newly formed "Northern Kingdom" wasn't too smart, but it "appeared" smart because for years and years their economy was incredibly successful. Lots and lots of money, however, most of their citizens were morally and spiritually bankrupt. Oh, yes.....they still believed in God, they just went to the other ones first. He wasn't their one and only.

This is the Hosea scripture that stopped me in my tracks:

You stumble day and night, and the prophets stumble with you.
So I will destroy your mother—my people are destroyed from lack of knowledge.
“Because you have rejected knowledge, I also reject you as my priests;
because you have ignored the law of your God, I also will ignore your children. Hosea 4:5-6.

Kind of rough wouldn't you say? God's anger at Israel is obvious. Why do I feel as though this is a major clue to the destruction in my life? Is this type of anger towards me in some way? I, too, have stumbled day and night as I've searched for the wisdom to heal my baby girl. The "prophets" of our age, aka the doctors, have stumbled as well. I'm destroyed, my daughter is destroyed by this ever-increasing "lack of knowledge".  Is He ignoring my beautiful girl?

It got me thinking....what about my wanderings? What about my early belief system? Who did I, or do I idolize?

I think I represent many people from my generation. I had a "learned belief system" in respect to having children. My believe system, i.e.,  the first people I consulted on anything with my health, my children's health etc. was the medical community. Sure, I believed in God, but, I was taught they are the experts, and that is what I followed. I trusted them. I believed every word they said. I didn't even flinch when it came to giving my newborns those "life saving" vaccines, including injections that were given within 12 hours of life. Why would I? They were golden in my eyes.

Isn't this truth? Aren't they the golden calves of our age? It's just what the average American family did. No questions....just believe. We all IDOLIZED them. No questions asked.

Cambridge Dictionary defines idol as:   a person who is loved, admired, or respected a lot.

Biblical definitions are a bit more serious:

"Idolatry literally means the worship of an "idol", also known as a cult image, in the form of a physical image, such as a statue or icon.  In Abrahamic religions, namely Christianity, Islam and Judaism, idolatry connotes the worship of something or someone other than God as if it were God." Wikepedia

It's my history, just like Gomer had her history. I was raised with parents that witnessed the "miracle" of the polio vaccine. They passed down the stories of the people in their community who lost their lives to polio. Even more so, were the stories of all that were SAVED by the selfless medical community. The legends were real to them, and within one or two generations, a learned belief system was solidified with a symbolic golden sheen.

Over the years the urban legends have morphed and we are at an age where more and more people put this institution, and their experts, first.  To many, their opinions mean more then what God has to say on the subject matter. Who even asks Him?

I remember watching a documentary on Amish communities. The leader of one of the communities was asked why they do not vaccinate and his reply was simple: "They do not want to interfere with the Will of God."

And there it is. A major reason why my daughter suffers so......I interfered with the Will of God and made choices for my baby based on my complete trust in an entity other than Him. I idolized the ignorant golden calf and there are consequences. Why did I, like Israel go after false Gods....like Gomer went to other lovers? One answer ---- learned, inherited belief system.

I remember I would go to church for prayer for Olivia, one of the first things the church official would ask me is.....Have I made an idol out of Olivia and Olivia's healing? Now, as I think back to this specific question, I kind of laugh. Of course...the fact that she hadn't been healed was somehow my fault...it had to be. The fact that I idolized the medical community was ok - even appropriate in their eyes. They even prayed for the doctors to heal her, not God Himself. Does God use doctors to heal people? Absolutely! Is it the only way? Absolutely not!

Another piece of advice given to me by all sorts or experts.....doctors, pastors, school officials...that I had to stop trying to "control" my situation. In the eyes of the spiritual experts, I wouldn't give the control up to God. In the eyes of the doctors, I had to ditch the control and just except her for what they said was her fault.....a genetic imperfection (that they could never figure out). Now, with the wisdom I've been so richly given, this really makes me laugh. You know why? Because of what they don't want to believe.  I realize now, that I lost and transferred control of Olivia's life the minute I handed my beautiful baby girl to my pediatrician for her first vaccines. What I had left was feeling out of control and dependent on man, not God. And for what? Because I believed in an urban legend? Complete destruction of her life....all because of my ignorant learned belief system. I was so confident. I was so prideful.

Pride. Don't you love it? It's epidemic. Some of today's "experts" in all sorts of fields lack reverence. Only the prideful can pose as experts, especially when they have never even looked into the history and the truth of an invasive procedure like vaccines. Many just believe the past "experts", never thinking to investigate on their own. How would you feel if you found out that you've been Hoodwinked when it comes to the true polio history? What if it were really propaganda, or better yet merely an urban legend? (Resources at the bottom of this post if interested).

"Mistakes were made.....but not be me" is the 21st century mantra.

This happens to be the title of a best selling book.....Mistakes Were Made (but Not by Me): Why We Justify Foolish Beliefs, Bad Decisions, and Hurtful Acts. This is an amazing book written by two sociologists speaking directly to this subject - cognitive dissonance.

"Cognitive dissonance, the mental conflict that occurs when beliefs or assumptions are contradicted by new information. The unease or tension that the conflict arouses in people is relieved by one of several defensive maneuvers: they reject, explain away, or avoid the new information; persuade themselves that no conflict really exists; reconcile the differences; or resort to any other defensive means of preserving stability or order in their conceptions of the world and of themselves. The concept was developed in the 1950s by American psychologist Leon Festinger and became a major point of discussion and research." Encyclopedia Brittanica

The authors give a synopsis here:

"When we make mistakes, cling to outdated attitudes, or mistreat other people, we must calm the cognitive dissonance that jars our feelings of self-worth. And so, unconsciously, we create fictions that absolve us of responsibility, restoring our belief that we are smart, moral, and right—a belief that often keeps us on a course that is dumb, immoral, and wrong. Backed by years of research, Mistakes Were Made (But Not by Me) offers a fascinating explanation of self-justification—how it works, the damage it can cause, and how we can overcome it."

We humans are wired to cognitively justify our actions and choices. At the same time we blindly, almost willfully, spitefully, making horrible and ever-worsening decisions. As a result, we devote an enormous amount of energy to creating and maintaining false constructs designed to preserve a sense of individual exceptionalism.

Are we being intellectually honest with vaccines?

Mistakes were made.

By me.

By the golden calves I worshipped.

The buck has to stop with me. Pride separates me from the One who could figure Olivia's mess out. Remember my post "Assumptions Can Be Deceiving....... Continued"? In it, I posted the results of a recent study on Aluminum - specifically:

"Whilst being environmentally abundant, aluminum is not essential for life. On the contrary, aluminum is a widely recognized neurotoxin that inhibits more than 200 biologically important functions and causes various adverse effects in plants, animals, and humans". Kawahara 2011 PMID 21423554

It inhibits more than 200 biologically important functions! Obviously, even the alternative community has not discovered how her system was screwed up - literally. God is it. Only God can do the fixing and the rescuing.

Is this God's plan? For each and every one of his children to someday be dependent on a medication to control a once intact biological God-given system? A medication made from a company that makes billions of dollars? God promises us freedom in Him. Where's the freedom in that?

Olivia deserved better.

God's giving me a second chance at helping Olivia, as Hosea gave Gomer a second chance. Like Gomer, I will no longer be the "spiritual prostitute" I was during the first time around. I'm forgiven. I'm loved by the Author of the Greatest Love Story in the bible.

The golden calf never delivered for me, or for Olivia. Their ignorance in what was originally God's creation has just made things worse.



This scripture is precious. Going back to Olivia's "Valley of Achor", where this trouble began. Knowing what happened to her body and fixing it will bring us to the door of hope. Surprisingly, over the last 18 years that damage has never been completely addressed. With 18 years of conventional doctor visits under our belt, Olivia is at her all time worst. The last hospitalization almost killed her.

Olivia, sweetie, I'm sorry I was such a Gomer.

God can rescue you.

I still believe He has a plan for her life and I am done interfering with His Will. Lauren Daigle describes this beautifully in her recent song - Rescue.

You are not hidden
There's never been a moment
You were forgotten
You are not hopeless
Though you have been broken
Your innocence stolen

I hear you whisper underneath your breath
I hear your SOS, your SOS
I will send out an army to find you
In the middle of the darkest night
It's true, I will rescue you






Forget the former things;  do not dwell on the past. 
See, I am doing a new thing!
Now it springs up; do you not perceive it?
I am making a way in the wilderness
and streams in the wasteland. Isaiah 43:18-19


xo

________________________________________



History of Polio resources:

Smoke, Mirrors and the "Disappearance" of Polio Dr. Suzanne Humphries

Dr. Suzanne Humphries book "Dissolving Illusions: Disease, Vaccines and the Forgotten History

Www.dissolvingillusions.com

The Moth in the Iron Lung: A Biography of Polio - Forrest Maready

Here is a Polio video series by Vaccine Historian - Forrest Maready

My Incredible Opinion with Forrest Maready - Polio Part 1
My Incredible Opinion with Forrest Maready - Polio Part 2
My Incredible Opinion with Forrest Maready - Polio Part 3
My Incredible Opinion with Forrest Maready - Polio Part 4
My Incredible Opinion with Forrest Maready - Polio Part 5
My Incredible Opinion with Forrest Maready - Polio Part 6

Friday, July 13, 2018

Recklessness?

Recklessness.

Kind of a crazy word to be bouncing around in my head lately don't you think?

Unfortunately, it's there for a reason I guess.

There are some who view my position on vaccines as reckless behavior. How on earth can I question.....and put into question what some call the most important medical discovery of modern medicine and infectious disease control history?

Believe me. Many people do not want to hear about it nor will they support it (or me) and they have zero qualms about tearing parents like me down with their actions or words.

Having a child with a vaccine injury redefines people's perception of you. Many are afraid to be associated with such a stance. Institutions constructed to supposedly help children with disabilities have and will shut any sort of vaccine injury conversation down.

Over the last 18 years I've been snuffed off by the best of them. School officials, medical professionals and even church leaders and their staff. To many, it's just not worth supporting (especially going public with) and/or agreeing with the truth of Olivia's suffering. Why? Because it is an extremely controversial subject. There is a boldness that is required to stand by someone like me. Many feel as though the risk of jeopardizing their social and/or financial position is just too high.....even if they believe me.

Although I've been pondering this label for awhile, I wasn't really sure the direction I would take it in my writing. I was torn with the message I would send by bringing up such a sensitive topic. Sensitive for all parties involved. I would emphasize that although initially I was offended when people shut me down during conversations (which was completely evident by the complete disengagement when the subject came up followed by looking over or past me while I explained what really happened to my baby girl) it doesn't anymore. Even if the eye contact doesn't reengage with some folks, taking offense is not worth the swirl of burden and spiritual consequences that cascade when someones opinions collide negatively with your own.

Olivia and I have had a long weekend together. The rest of our house went camping, hiking and boating. Unavailable staffing and Olivia's inability to participate in such a weekend kept us both home while the rest of our family enjoyed quality time and memory making. The plus side of these lonely 96 hours was a reduction in cooking and the increase in music playing.......as loud as I wanted. Eeeek!! What a bonus.

One listen to this song and I immediately knew how to write about this subject. Coincidentally, (or not coincidentally) the name of the song is "Reckless Love"!!

I agree somewhat with my critics......I may be a tad bit reckless....the main difference is that I'm not reckless, rather my love for my injured daughter is. Who better to explain this important difference better than the author of this song, Cory Asbury. Here's an excerpt from the story behind the song:

"So, when I use the phrase the "Reckless Love" of God. we are not saying that God, Himself, is Reckless. He is not crazy. We are, however, saying that the way He loves is in many regards quite so.

He is utterly unconcerned with the consequences of His actions with  regard to his own safety, comfort and well being. His love is not crafty, or slick... its not cunning or shrewd. In fact, all things considered, it is quite childlike, and might I even suggest sometimes down right ridiculous.

His love bankrupted heaven for you...for me. His love doesn't consider Himself first.  It isn't selfish or self-serving. He doesn't wonder what He will gain or lose by putting Himself on the line. He simply puts Himself out there on the off chance that you and I would look back to Him and give Him that love in return. His love leaves the 99 to find the 1 Every. Single. Time and to many practical adults that's a foolish concept.





But what if he loses the 99 in finding the 1, right?  What if? Finding that one lost sheep is and will always be supremely important. His love isn't cautious.  It's a love that sent His own Son to die a gruesome death on a cross.

There is no plan B with the love of God. He gives His heart so completely..... so preposterously that if refused we would think it to be irreparably broken. Yet, He gives himself away again and again and again and again.....time and time again. Make no mistake, our sins do pain His heart and 70 X 7 is a lot of times to get your heart broken and yet He opens up and allows us back in every single time.

His love saw you when you hated him. and all logic said they'll reject me, He said, "Naw,
I don't care what it cost me. I lay my life on the line as long as I get their hearts". Cory Asbury

Ohhhhh dear friends. No words could ever be Truer for the mother of a vaccine injured child. She is "utterly unconcerned with the consequences of her actions with regard to her own safety, comfort and well being. Her love is pure, not "crafty, slick, cunning or shrewd...it's quite innocent and childlike".  Some think she is ridiculous.....even perhaps 'Munchausen-ish".

She bankrupts her heart and pocketbook.....doing anything to bring relief and bring her child back. Her love "doesn't consider herself first. She isn't selfish or self serving. She doesn't wonder what she will gain or lose by putting herself out there". She "puts herself out there on the off chance that her precious child will look back at her and give her that love in return." Painfully priceless.

Her love "leaves the 99 to find the one every time, and to many practical adults it doesn't make sense." She may have to leave old friendships that don't allow for the support she needs to focus on her "lost" child. Some critics talk about the lost child's siblings and the "neglect" those children experience because of the mother's obsession. Really?

Oh, yes, we are warned.....your other child will develop issues, you are choosing one over the other, or my favorite...think of the other children in the family...the neglect. Does this pan out? Why is it that most children who have a seriously ill brother or sister become the most amazing people? No entitlement issues, selfless, caring individuals who actually walk out the Truth Jesus teaches first and foremost....love. They see the suffering, they feel the difference in their family...they learn and develop coping skills...unlike many of today's young adults on college campuses.

The sibling of a developmentally challenged child get to see the love of Jesus at work. They see and become the "hands and feet" of Jesus and become stronger from it.....not a victim of it. These are the kids that grow up knowing how to make intelligent, informed choices for themselves and their families. They learn that a belief system can be challenged simply through gaining knowledge and doing the research themselves. They end up choosing an informed decision. They become sheep of a different Shepard.....the true shepherd who would not sacrifice a child or two or 100 to develop unsafe vaccines that make big companies billions of dollars.

There is no plan B for the mother of a vaccine injured child. She "gives her heart so completely, so preposterously." Hers is the heart that's "irreparably broken", yet she gives herself away again and again and again. She takes on the rhetoric from her family and friends, never backing down from the truth they just don't want to hear.

The original context of this parable defines the "lost as a sinner who has lost their way . The righteous, proud individual who's sin has blinded him to God's love. I found a different definition of "lost" that fits with our current situation --

"Denoting something that has been taken away or cannot be recovered" - Merriam-Webster

Olivia has been lost. She's been taken away, and with God's leading she can be recovered. Verse 5 goes on to say:

"And when he finds it, he joyfully puts it on his shoulders and goes home. Then he calls his friends and neighbors together and says, ‘Rejoice with me; I have found my lost sheep.'"(Luke 15:5-7)

I'm finding my lost sheep. Slowly, but surely. A mother's "Reckless Love" is merely an imitation of Jesus. Isn't that what we are called to aspire to? Remember that saying....."What Would Jesus Do"? He doesn't give up. On you, me or Olivia.



Out here, in the wilderness looking for my lost sheep. These words run chills down my spine...

There's no shadow You won't light up, Mountain You won't climb up, Coming after me
There's no wall You won't kick down, Lie You won't tear down, Coming after me

Go ahead. Be reckless for someone who's lost. Reckless Love.

xo


p.s. This is a powerful video of God's "Reckless Love". As a mother to a couple young adults and a pre-teen, the video provides a visual of God's behind-the-scenes protection as our children make choices in life that seem to separate them from God. He'll leave the 99 each and every time for the 1.