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, February 19, 2017

Wisdom seeking

Hi there :)

As I thought about what I was going to write to you tonight, the image of a "cloud, the size of a man's fist" came to mind. Immediately, I thought of 1 Kings 18:22:

"The seventh time the servant reported, “A cloud as small as a man’s hand is rising from the sea.” So Elijah said, “Go and tell Ahab, ‘Hitch up your chariot and go down before the rain stops you.'"

Remember that story? It feels incredibly personal to me in this season of my journey. Elijah, the mighty prophet of God, doing what he does best - predicting and proclaiming the power of God in the midst of waiting for a sign.

Yes, the drought was coming to an end, he knew it.  On the seventh visual attempt, the servant saw "the cloud as small as a man's hand". For him, it was rain; for me, it was wisdom. My fervent prayers for wisdom to help Olivia began several months ago. At first, it was a snippet, here, then there, but soon it became a billowing cloud that took my breath away. Making the changes necessary seemed to move in slow motion, like a slow-moving storm with fiery lightning and loud claps of thunder.  Have you ever felt like you have wisdom on a situation, but struggle to move forward in that wisdom? Does that make sense?

What interests me about this particular scripture is that it happened the "seventh" time the servant looked outward for any sign. Have you ever wondered what the scriptural meaning or symbolism of certain numbers are? For instance, seven is the number of completeness and perfection -- three is the trinity of the persons of the Godhead, five symbolizes grace, eight being a new beginning....etc etc. Where am I going with this, you ask? Well, every year I would search out the meaning for the corresponding year of my sentence to Olivia's suffering. Each year would come, and my reality seemed to be the opposite of that year's meaning. Year twelve, in my definition, was the beginning of the fall; thirteen I was cast in a shadow of confusion and chaos. Fourteen, fifteen and sixteen were represented by deep division and hopelessness.

By year sixteen I knew I had to get the fear under control. Why did I wait so long? God's Word says "love cast out all fear". Love. To love is easy......right? To love a child who suffers intensifies the meaning of love....and fear. It's heartbreaking but it is a wise teacher. For me, fear has been a big one. 2 Timothy 1:7 says that God did not give us a "spirit of fear". Intellectually I understand this verse, but applying it and keeping fear out of my heart was another story. Seizures are scary. Uncontrolled seizures instill a fear like no other. Who likes something that is uncontrollable? They are ruthless, they are relentless and they do not play by the rules. They are thieves. They mock in their ability to control. They destroy everyday moments and seek to prove their vigilance and dominance. Even if I knew intellectually that the "spirit of fear" I was feeling daily was not from God, I was defenseless in eradicating it from my thought process. I tried so hard to operate without fear but I always lost my way. Sure, scripture counsels to take your eyes off your circumstances; but seizures demand your undivided attention.

Fear distorts and does it's best to define. Oh, if I could only have a nickel for every piece of "well meaning" advice I have been given along the way (as my heart was gripped by fear) I would be a rich woman.  A couple of my favorites have been, "God has a plan for Olivia's life"(i.e. whatcha worried about), or "Well, you get what you get.", or "At least you have her". My humility remains quiet, as my spirit begs to scream.  I realize that their logical comments lack the depth of experience...I know. I get it.  Intellectually, we can say a number of logical truths that are quickly dispelled once it's your heart on the testing train. Logic, in many cases, is the absence of personal fear, but can accompany pride.

Lisa Bevere has an interesting way of describing fear, as she replaces the word "love" in the beautiful verbiage of I Corinthians 13:4-8:

Fear is impatient, and unkind, while envies and boasts, it is arrogant and rude. Fear insists on its own way, it is irritable and resentful, rejoices at wrong doing rather than in truth. Fear bears nothing, believes nothing, hopes nothing endures nothing. Fear will end.

God has been incredibly patient with my struggle with fear....even in Olivia's seasons of daily seizures. She continues to have her good weeks and bad. Learning more about "love" has dominated my study. To love when it's hard. A complete study on love has to include the lesson on vulnerability, as C.S. Lewis so eloquently describes:

To love at all is to be vulnerable. Love anything and your heart will be wrung and possibly broken. If you want to make sure of keeping it intact you must give it to no one, not even an animal. Wrap it carefully round with hobbies and little luxuries; avoid all entanglements. Lock it up safe in the casket or coffin of your selfishness. But in that casket, safe, dark, motionless, airless, it will change. It will not be broken; it will become unbreakable, impenetrable, irredeemable. To love is to be vulnerable.”
― C.S. Lewis, The Four Loves

In reality, my vulnerability does not stop with Olivia. I am also sharing my vulnerability to you, my readers as I choose to walk out this journey with you. I am vulnerable in disclosing how it is I keep on believing for a healing that to many seems impossible. I also feel vulnerable to God's leading.

For instance, after the full Exome genetic testing results came back completely normal, the geneticist referred me to several doctors at Mayo. Excited for the new doors God was opening, I recently spent 5 days traveling back and forth to Rochester to meet with the best and the brightest. I thought there would be answers to some of the "pieces to her puzzle" I felt were revealed in that rain cloud of wisdom. As I look back on the blur of all those appointments, I see the systematic slamming of each one of those doors. All four specialists rebuked any possibility of understanding Olivia's "illness" and their inability to provide any treatment for her "rare" disorder. Although one of the doctors ran some blood work to confirm or deny an existence of autoimmune possibilities ( this blood work returned completely normal), the rest simply looked at her (with no examination) and confirmed there was nothing they could do. My struggle with this whole charade moves past fishtailing down the middle of southbound Highway 52 on some invisible black ice. I question why on earth the doors were open in the first place. My vulnerability to love,  and Trust in that Love gets weak and seeks to question His leading.  The weaker I get, I begin to wonder if there was a carrot on a line at the end of a very long stick. Uncle already.

Now that is vulnerable.

So. The only thing I can do is to go back to that familiar word and command that has kept me going for 17 years. Trust. Its the only thing I can do. Trust in His Love.

"Only those who love are fearless. Love seeks to restore....So we must Love fearlessly" Lisa Bevere.

Remember Elijah from the beginning of this writing? He was a prophet and still struggled with his feelings and emotions. He felt fear and loneliness. God, however,  reminded him that He has work for him to do even while feeling like a failure. One commentator explained a lesson from Elijah's life. "We are never closer to defeat than in our moments of greatest victory".

Satan instills the fear. Satan is the thief and our enemy. Yes, we do "Get what we get"; but, sometimes what we get gets stolen from us.

We are now in year 17. What do you think 17 represents?

Overcoming the enemy and complete victory.

I'll take that.



  1. OH I wish I had known you were coming down this way with your visits to Mayo, Kelly! I would have SO joined you in support. Please think of contacting me if you get down this way again. Ok? I'm no stranger to Mayo with my own issues since birth. And I am often available at a moment's notice. Let me help lighten the load next time. <3
    As for your fervent trust, hold on to it. Keep holding on when all else says not to. I get it. There is never an "end" where you must "let go" of that trust. Trust forever without end. That is where we find our Hope. I speak these words as much to myself right now as to you. <3 <3

  2. Again, it has been an honor to follow and read your blogs since we met at Hosanna. You are strong and courageous and you will overcome the enemy and win. Love, Robin Svendsen