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.

Friday, February 23, 2018

Repentance - For the Race Set Before Us.

Hey, there :) - it's me again.

Been thinking. It's hard not to while sitting in this small room, day after day, week after week.

What is my role in this long, overstayed visit? Trying to look inward..... I'm crabby for sure. I was thinking about that several days ago during the daily "huddle" with Olivia's "doctor team of the week". Frustrated to say the least......I think anyone would be. Angry. Questioning what the heck is going on with these fevers. Is there sin tripping me up? What is this race I'm running?

Do you ever just get so worked up about a situation and you know darn well you have absolutely no control over it? Where the answers are slow, and the future appears questionable? Each morning, for the last 5 weeks, I wake up on this pullout futon searching for a way out of this place. What's the answer?

You know me. Even though I'm not talented enough to sing worth a darn, listening to music....especially praise and worship music gets me thinking. It's like these songs minister to my questioning spirit and point me to an area of my life that needs a little mending....in this case, repenting. Today, I heard Switchfoot's amazing song "I Won't Let You Go"

Seriously.....take a gander at a couple of these lyrics:

When it feels like surgery...And it burns like third-degree...And you wonder what is it worth?
When your insides breaking in..And you feel that ache again..And you wonder..What's giving birth?

If you could let the pain of the past go...Of your soul...None of this is in your control
If you could only let your guard down...You could learn to trust me somehow
I swear, that I won't let you go

If you could only let go your doubts...If you could just believe in me now
I swear, that I won't let you go

When your fear is currency...And you feel that urgency
You want peace but there's war in your head

Maybe that's where life is born...When our fa├žades are torn
Pain gives birth to the promise ahead

There ain't no darkness strong enough that could tear you out from my heart
There ain't no strength that's strong enough that could tear this love apart
Never gonna let you go

These words! They so easily confirm the scripture that stopped me in my tracks today:

The Lord isn’t really being slow about his promise, as some people think. No, he is being patient for your sake. He does not want anyone to be destroyed but wants everyone to repent. 2 Peter 3:9

We all have those pangs of unforgiveness that we can't let go of. Honestly, if you really think about it. For me, I guess I realized in the last couple weeks how incredibly mad I have been towards the medical community in general. Seventeen years is a long time to carry the hurt, anger and bottled up bitterness that stems from what was stolen from me. Maybe I'm the one that needed the surgery here. A deep incision into my broken heart to remove this infective root of anger and bitterness. Maybe this would rid me of my own fevers of contempt, sarcasm, and victimhood.

It's funny, but to those on the outside, that seems so logical. It is logical if you've never walked in my shoes or the shoes of a parent who witnessed and reported the same dreaded fate for their child. People can see the logic of me extending forgiveness to a highly praised community even while their own personal life reeks of held on offense and hurt that may have happened years ago. No condemnation here, just putting in perspective where I am coming from.

What if your growth depended on forgiving someone while being in the uncomfortable position of having to completely depend on them at the same time? That concept is not so far-fetched. In fact, I think of the many people I know who grew up with an abusive parent, and as a child, they obviously had no recourse.  It seems crazy that I am in this position, or is it? Relying on a system that is responsible for screwing up her system so terribly that she is incapable, really, to break down medications that she needs to get better. Can't get any more stuck than that.

This is hard to hear.....I know. We all want to believe the fairytale concept of the "First Do No Harm" motto. In fact, this was recited to me by one of the docs on her rounds when I wanted to use a simple supplement. I won't languish in his embarrassment when he later had to diagnose her with a reaction from a medicine given to her here as the culprit of these fevers. I did not know that according to the FDA, drug Adverse Drug Reactions (ADR) are the 4th leading cause of death in the US.

Truth is hard to hear sometimes....and for me, learning how the Truth of how truly destructive unforgiveness is to our souls and our walk with God was life-changing. Over 17 years I have been pruning and repenting all sorts of unforgiveness. I guess you could say I saved the best for last. The one that seemed to act as a messed up security blanket. Can anyone relate? When we first checked in here I was deep in resentment. Watching her suffer in their midst is like pulling a scab off a 17-year old wound that has never healed. Truth is that my own free will allowed that sore to remain scabby and ready to be triggered.....even by accident. Positioned perfectly for the next ripping off ceremony. Does that make sense?

Sometimes difficult situations force you to look to other avenues of relief, especially after several weeks. Tearfully repenting this bitterness was the most freeing thing I've done in the last month. It was interesting, but for the first time, I was truly able to look past her injury and the perpetrators who destroyed my beautiful girl's life. I finally let my guard down and it granted me the privilege to take the time to truly gaze into the eyes of the hospitalists that are taking care of her. It revealed a much different picture then I had been imagining in my head. Once free, I witnessed the glossed over tears forming in their eyes.....the sound of a choked up professional assessment and the countless confessions of being up all night, "thinking about Olivia", researching possible diagnosis's to explain Olivia's extreme uncomfortableness and crazy high fevers. It reminded me that "our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms." Ephesians 6:12

Now that's freedom.  All it required was an obedience to His Truth. We can all look at all the terrible things that have been done to us and hold onto it ---- it's your right. But when I took to heart my role in transforming that hurt into sin I can see why I've been stumbling and tripping up in this "race set before me." I want His endurance, not my own.

I was thinking about it last night. This really free's my soul to continue writing about our journey with vaccine injury. I can report the truth I've learned and hopefully provide a different avenue of emotional freedom to other parents who may be just like me. It seems odd in the flesh, but true submission to the highest Judge is the most powerful thing for life renewal and recovery.

The last couple verses of this song scream an important Truth ---- He's never going to let you go. No darkness is strong enough.

 Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or sword? As it is written:

“For your sake, we face death all day long;
    we are considered as sheep to be slaughtered."

No, in all these things we are more than conquerors through him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.  Romans 8:35-39


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