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
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?
Friday, November 23, 2018
So much to update you on! Her progress......what she's regained!
Sunday, November 18, 2018
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.
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
"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?
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.
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
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
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