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.

Thursday, July 5, 2018

Two steps forward.........one step back👣

Hey there.

Maybe I'm wrong, but I think by this time my readers know something is up when I haven't posted in a while.  We've hit a low spot in our journey...... by "we" I mean me. Olivia is slowly moving along....regaining some of what she lost in the hospital but unfortunately this time around it's been an extremely slow recovery.

So? What's up with me you might ask?

The weakness is real, and disastrously powerful.

What do I mean by that?

After making the videos of Olivia, my heart felt exponentially wounded. Reliving her vibrant personality before the injury conjured up feelings of anger, which clearly led my mind to the latest hospitalization....my weakness screamed,,,"Really Lord, we were on that new path you set us on. Why on earth was this further victimization allowed?" (sigh)

Soon after, I felt myself taking a break. Taking a break of my morning devotional as I watched my beloved "God" books collect just a wee bit of dust on the bookcase beside the makeshift bed in our office. "It's summer", my mind reasoned. "You've had the worst six months of your life", it went on and on and on. In my defense,  I was also gearing up for a 4 day "vacation" to the Dell's for my little dancer's nationals and soon I kind of fell off God's radar.

Over the last 18 years of this sucky journey, I was desperate for some peace in regard to my beautiful girl losing her voice and soul as seizures took hold and ravaged her mind and body. I thankfully found that peace in God's word. Every day was spent reading or learning scripture as I grew in my understanding of God's character. This method was my "pill" taken every morning which enabled me to move through my day and fight for the one I lost.

Upon my return from the Dells, I realized that all I had worked up to was gone. As I walked through the door, I was no longer looking through eyes of faith, what I was now seeing was the horrible, impossible and depressing condition of my beautiful girl. I looked at her as she lay on the gym mat filling our scantly furnished living room. The once faith filled eyes that looked past circumstances now focused on her inability to get herself to a seated position which is clearly a prerequisite to standing and walking. At once, I was on the mat pulling her legs down from her favored "fetal position" reminding her that she's not a baby. Emotions that I haven't felt for, well, 18 years flooded my spirit and the "refreshness" of my time away vanished in an instant.

I was desperate. Once again.

I was desperate to get that peace back.......like yesterday.

That night, while laying next to her as she began drifting off to sleep, something unexpected happened. I had just settled in reading one of my "dusty" God books when I felt her right hand feel around on the bed. All of a sudden she grabbed my left hand and clasped it tight...intertwining her fingers through mine as if she were saying....."I'm holding on to you Momma....please don't give up on me". In that instant, it dawned on me......that is what I was doing every morning when I sat down to read God's word. Figuratively, I was searching for his hand in the dark, feeling around for the grasp I had grown to know so well, all while whispering "I'm holding on to you Lord.....please don't give up on me."

Dependence on Him is the only cure to my debilitating weakness.



After this experience, I was intrigued to learn more about this stint of apathy and weakness. I was reminded of the many mindset strongholds I've developed throughout the years, including my mode of operation when it comes to the race that has been set before me. Weariness can and has overtaken me. Honestly, I thought I was past this.

Then I was reminded of 2 Corinthians 12:9, and this verse came alive in my life and in this situation:

But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me.

I now know that the trigger for my spiral has a root, and that root was an inability to really grasp her condition coming out of the hospital. Not only her regression but the intense anger I felt towards the staff at the hospital. I no longer harbor any of this anger towards them, but inadvertently turned it on myself. How could I let this happen to her? That, there was giving into my weakness and losing the power to overcome it.

Here's the key for me. God's GRACE is empowerment. I don't deserve it, it's not earned, but an unmerited gift. I turned away from his grace when I stopped reading His word. He reminded me that His power within me is greatest when I face situations that are beyond my ability to handle.

Yes, yes, yes. I know.....God is in control. I receive this message a lot from people. He is in control but for some reason He wants me to be involved in this situation. Oh, how I would love to kick back and do nothing. I've come far enough down this road to realize that for some reason He's working this thing out through me not for me.

Tenth Avenue North has the perfect song to describe this phenomenon - giving God the control knowing He wants you to be a part of His plan❤️

Here I am, All my intentions, All my obsessions
I want to lay them all down
In Your hands, Only Your love is vital
Though I'm not entitled, Still You call me Your child
God You don't need me, But somehow You want me
Oh, how You love me, Somehow that frees me
To take my hands off of my life, And the way it should go

I've had plans, Shattered and broken,
Things I have hoped in, Fall through my hands
You have plans, To redeem and restore me
You're behind and before me
Oh, help me believe (Control, Tenth Avenue North)



With this in mind, we constantly pray for you, that our God may make you worthy of his calling, and that by his power he may bring to fruition your every desire for goodness and your every deed prompted by faith. 2 Thessalonians 1:11


xo

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