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.

Sunday, January 21, 2018

Where do you looketh?

After sitting down with my favorite healing book for what seems to be the millionth time, something dawned on me. Eighteen years later, and I continue to look the wrong way. The author led me down an interesting path with one tiny line of scripture:

Numbers 21:8
It shall come to pass, that everyone that is bitten when he looketh upon it, shall live.

Look here to live.

Looketh where? It shouldn't be work...right? Why is it so difficult?

What is it that I looketh upon? Scripture is clear as to how healing comes. It comes by faith, not sight. So where do I looketh?  Where I always have.....at the devastation, the fall out of vaccine injury.

Honestly, sometimes I get so frustrated. I realize we are to look away from our symptoms, to turn away to what we do not see.

Ugh.......but those pesky seizures. They demand our attention. They are loud, and scary....they hold center stage, how can you not see?

She’s 19 and cannot talk. Autism 101. Unable to "not" see this symptom or so many more....

She’s weak and cannot walk very good by herself. She wears a diaper. Her immune system is shot.

Symptoms of the unwell. Symptoms of a damaged body.

How do I look away and "not see"? Isn't that a common cry of the chronically ill. These are the ones that can't look beyond their demanding symptoms.

Remember the old cliche that some people wear their hearts on their sleeves? I would say this is a description of me before the injury. My emotions (normal emotions), good and bad, there for the world to see. Like many women.

But then......I had a child and that heart suddenly relocated from both beneath the breast and from that comfy flannel sleeve.  Now full of unexplainable joy, it peels itself off easily and jumps full bore into each precious little soul that suddenly became my responsibility, becoming the love of my life.....my heart.

Soon my heart starts babbling, crawling, walking and talking.

And then suddenly, one is gone.....Olivia's soul is trapped in the prison of her own injured, impaired body.

Her soul, my heart. Gone. Stolen, right from under me.

Unexplainable pain for so many Momma's out there.

I think it was around day 22 in the hospital this time around. Suddenly, things turned around. In an instant. Finally, the constant seizures were under control. The trips to the ICU.....thwarted.

This hospital stay was like all the rest. Olivia gets admitted for uncontrolled seizures resulting from an illness. In most cases, it's the same scenario. I often liken it to a snowball released at the top of a snowy hill. Illness.......weakness......stops drinking and eating.....dehydration......increased seizures....loss of control......standard of care.....ICU.  IV fluid is a miracle for her, but that is where the benefit of "standard of care" stops. In most cases, the medications that are administered from this point on complicate her symptoms from the onset. She just does not respond to medications like the average person and honestly, it is maddening.

This time, the neurologist confirmed it. They use a protocol that "works the best for the most people". He used the medications that he has had success with other children. I get it. That line of thinking seems to never work for Olivia, and after 3 drugs in the same family and a trip to the ICU it was painfully obvious. They say....she's complex, she's complicated. The truth is she BECAME complex and complicated by the vaccines and their toxic ingredients. Rest assured, this will be proven.

This time I had a recollection of a medicine that helped her in 2012 and we tried it. And it worked. Suddenly,  in an instant,  there was peace.

My adrenaline was slowly dissipating and I snuggled in one night with Olivia to watch a movie. Moana, the Disney animated movie was one of the choices and I realized I had never seen it.

What is it with me and Disney princesses? Ha!

What’s most surprising is that I have a younger daughter, who at the time this movie was released, was the prime age to head to the theatre with. Not sure if you can guess, but something else took priority and my darling little girl watched this movie without me. So my first viewing was day 22 of a stressful hospital stay, December 2017.

For those unfamiliar with this incredible tale, Moana, the daughter of Motunui's chief, has a destiny to fulfill. The entire movie bleeds Christian symbolism. The ocean (God) chooses her for what looks like an impossible mission. Tragedy strikes her remote island and she is thrust into her calling unprepared. As she moves through her mission, she questions why she was chosen, is ridiculed by one who says the ocean was wrong to choose her, and at one point, gives up on her mission. She overcomes her shortcomings and finds her way through tremendous obstacles.

She overcomes......with the Ocean's help. Towards the end of the movie, I realized the truth of the widespread devastation to Moana's island that fueled her destiny and it surprisingly hit home.

Her mission ----- to restore the heart of Te Fiti. Ancient stories dictate that once stolen there was widespread devastation.

Te Fiti's heart......my heart. Stolen....right out from under us. Unfortunately, the similarities didn't end there . Once Te Fiti's heart was gone she became Te Ka, the damaged and angry shell of her former self.

I could identify with Te Fiti and the person she became when her heart was stolen by a self serving, greedy guy who thought he was a God. Maui thought he was doing good, but suddenly, within seconds, his actions put into motion a devastating cycle that destroyed beauty. Does that description strike a cord with anyone?

The ocean returned Te Fiti's heart. That’s where the story gets good. It was the only One that could do it. He used Moana.

I guess this would be a shout out to all the Momma"s and Daddy's who have had their hearts stolen. I’m not proud of what I became for a while.....I did resemble Te Kā in some ways. I was angry, overwhelmed and ‘fiery’ to everyone and anyone for several years. Like Te Ka, I pushed away some of the people who were there to help restore my heart......I guarded my turf. My heart was at the bottom of the ocean, barely beating......sorely missing it’s former brilliance. But then He found it, held it up and I couldn't help but crawl across that ocean floor to get it back.

The lyrics in this short clip provide healing insight to those who have lost their hearts, however that may have happened:

I have crossed the horizon to find you (Ezekiel 34:11)
I know your name (Genesis 16:13)
They have stolen the heart from inside you (John 10:10)
But this does not define you (1 Peter 2:9)
This is not who you are (Colossians 1:13)
You know who you are (Ephesians 2:5)(Many others)

Oprah is raving about how ‘My Truth’ is the most powerful tool, I feel she is sadly mistaken. My truth falls flat without His Truth. My truth was full of ugly feelings, hopelessness and unforgiveness towards those who stole my heart.

It could only be returned by Him.

Oh, but looketh over here. This is where you live. Not at her symptoms but in the Hope that lies in stepping into each day that she's still here with me. There are many vaccine injured children who do not get a chance to live, for they lost their lives. She's still here for a reason.

For you who have made some bad decisions, for your children or for yourself, please remember you are not defined by them, you are MORE. In addition to God's powerful healing Word, the song "You are More" by Tenth Avenue North ministered to me many days as I worked through the horror of that fateful decision to vaccinate. One decision suddenly changed the complete trajectory of Olivia's life.

Lean into these key lyrics:

You are more than the choices that you've made,
You are more than the sum of your past mistakes,
You are more than the problems you create,
You've been remade.

For when my outward action doth demonstrate / The native act and figure of my heart / In complement extern, 'tis not long after /But I will wear my heart upon my sleeve / For jackdaws [birds] to peck at: I am not what I am.  Shakespeare


1 comment:

  1. Thank you Kelly, for another absolutely beautiful, touching and inspiring post; and thank you for including the powerful and very appropriate "Moana" and "You Are More" clips. Continued love and prayers for you, Olivia and all your family. God bless and take care...