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, January 31, 2019

Even the Weak Can Fight to Overcome✨

Whew. What a year.

We've been so busy rehabbing and rebuilding, that I literally missed the 1-year anniversary of Olivia's last admittance to the hospital.....exactly 1 year ago this week.

Remembering it....takes me back.  Takes me back to one of the worst hospitalizations of Olivia's life. One filled with ignorance, the use of intimidation and fear with her diagnosis, treatment and eventually her prognosis.

If you are new to Restoring Olivia, I'd invite you to read some of the past blog posts from that period:

Where do you looketh?
Back Here Again
Can Wisdom Be Elusive for the Wise?
Valentine Fever? When loving the broken is this year's plan๐Ÿ’”
Faithfully Waiting for that "Suddenly" Moment. Can We Bounce Back?
Repentance - For the Race Set Before Us
The Perfect Storm
Assumptions Can Be Deceiving

Olivia is moving past this. All of this. Just another insult to her destroyed vitality. Rebuilding that vitality is of much more importance. I'm so thankful I've moved past it too.


I have.

I no longer want to be captive by those memories and the pain that lies within them. Of course, the enemy of my soul loves to take me back there, but God wants us to leave. To resolve. To look to Him instead of back at the unfairness of it all.

But, does that mean I shouldn't talk about our journey? Talk about what happened to her? Why would I bury our experience? For no-one else to see and learn from.

I ran into a woman at the grocery store who is a "prayer" person from a local ministry. She asked how Olivia was doing, and several questions later I was telling her of our hospital experience. Within an instant, she was asking (telling?) me that I HAVE TO forgive the doctors and that THEY WERE ONLY DOING WHAT THEY KNEW HOW. That they WERE THERE TO HELP. She had no interest in listening to the "WHY's" of Olivia's near-miss demise. She had some defending to preach.

Very unsettling. I no longer fall for this shaming tactic. A lecture from an individual who supposedly hears from God.

I get it. I am to forgive, which I told her I had done. But, she wanted my silence. She, herself, judged. Why I wondered?

People are so afraid of the truth.....even christian prayer warriors. They don't want to hear about the damage that was done to my perfect, beautiful girl by the conventional medical community.....they only want to sing their praise.

I no longer lift up and rely on supposed "religious" people in my community. They have never embraced our story and I only walk away feeling wounded. I always felt as though they were stronger, smarter and closer to God than I.

What a lie I believed.

I wonder if that is how many of the parents in my situation are treated. Love, grace & mercy to everyone --- except that mother who CLAIMS her child's life was destroyed by vaccines. No, not her, not ever.

This past year I've changed course. No longer am I the desperate mother waiting to talk with some religious folk...instead I am the desperate mother waiting for a conversation with God Himself.

I go directly to His Word. I focus on scripture like these:

He gives power to the weak, and to those who have no might He increases strength. Isaiah 40:29 ๐Ÿ˜˜

God has rescued us from the power of darkness and has brought us into the kingdom of his Son, whom he loves. Colossians 1:13

Jesus told his disciples "The knowledge of the secrets of the kingdom of heaven has been given to you, but not to the masses. Matthew 13:11-12

The more we study and learn the more God will reveal Luke 12:7 (NIV)

Indeed, the very hairs of your head are all numbered. Don’t be afraid; you are worth more than many sparrows. Luke 12:7

What I've learned is that I can move past this horrible experience without shutting it away in a cold, dark place in my heart. With God's help, I am able to forgive their inexperience and awful decision making.

This new strategy is working wonders. Do you remember the "new normal" they said would come of Olivia's life? The prognosis we left the hospital with?

Inability to eat real food - to eat and swallow
Inability to hold her head up
Inability to sit again
Inability to walk again

We are well past all these except the walking thing - check out the video from last week's physical therapy:

Remember the verse I was leaning on during those initial months home from the hospital?

I will lead the blind by ways they have not known, along unfamiliar paths I will guide them;
I will turn the darkness into light before them and make the rough places smooth.
These are the things I will do;  I will not forsake them.      Isaiah 42:16

He turns darkness into light.....not the other way around. I do not have to be ashamed.

I do not have to hide our difficult journey in the dark. His light has, and will continue to light the way. Darkness and shaming are not of Him.

Darkness comes. In the middle of it, the future looks blank. The temptation to quit is huge. Don't. You are in good company... You will argue with yourself that there is no way forward. But with God, nothing is impossible. He has more ropes and ladders and tunnels out of pits than you can conceive. Wait. Pray without ceasing. Hope. 

John Piper