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.

Wednesday, September 30, 2015

Why Believe?

I am sure many people who have familiarized themselves with our journey wrestle with this very simple question ----- "Why on earth does she still believe her daughter will be healed?"

It has been 15 years. 15 years of searching, striving, reaching, trying, clinging (to hope), pursuing (and perfecting faith); and failing (miserably along the way). Who do I think I am anyway?

Failing is inevitable when no one seems to know what is going on. Therefore, believing can be difficult when left up to ones self to accomplish it. Believing can take us out of our comfort zone and propel us to where the magic happens. More often than not, this is easier said then done; especially when your kid is having seizures everyday and nothing seems to stop them. How is it I continue to believe?



This wouldn't be one of my writings if it didn't include one of the amazing songs that feels like it was written for me. Laura Story's "I can just be me" fits nicely.

I've been doing all that I can 
To hold it all together, piece by piece 
I've been feeling like a failure 
Trying to be braver 
Than I could ever be 
It's just not me 

So be my Healer, be my Comfort Be my Peace 
‘Cause I can be broken 
I can be needy, Lord, I need You now to be, be my God 
So I can just be me 

I've been living like an orphan 
Trying to belong here 
But it's just not my home 
I've been holding on so tightly 
To all the things that I think 
That satisfy my soul 
But I'm letting go 

So be my Father, my mighty Warrior 
Be my King 
‘Cause I can be scattered, frail and shattered 
Lord, I need You now to be 
Be my God so I can just be me 

‘Cause I was lost 
In this dark world 
‘Till I was finally found in You 
So now I'm needy, desperately pleading 
Oh Lord, be all to me 

So be my Savior, be my lifeline 
Won't You be my everything? 
‘Cause I'm so tired 
Of trying to be someone 
I was never meant to be 
Be my God, please be my God 
Be my God so I can just be me 



This song resonates deep within. I identify with its entirety. For so many years I have felt so alone in my belief that she could recover - feeling kind of like an "orphan" trying to belong in this wilderness place I have been living. I now know that the work the Mighty Warrior has completed in me over the last several years makes me able to finally achieve the meaning of my name, which happens to be Warrior. I would think that a warrior at heart is able to believe in a worthy battle, with impossible odds - don't you? All I know is that He makes me want to be brave. You need to be brave when immersed in the dark world of mental/neurological illness. It's dark. It's confusing. It's a mystery, it doesn't make sense and even the "professionals" do not have a handle on it. It literally sucks the belief right out of you.

be·lieve (biˈlēv/)
1.     accept (something) as true; feel sure of the truth of. To be convinced by, trust, have confidence in the truth, existence, reliability or value of something, consider honest, consider truthful, to have religious faith

2.    hold (something) as an opinion; think or suppose.

Believe, or........better yet believing.

I've been thinking a lot about the word believe. In order for the epileptic boy in scripture to be healed, believing was not optional for the boy's father. True believing........deep down.......absence of mistrust....hiding in there behind the fear, kind of believing. The kind that is sought after by those who suffer deeply, those who try to believe the concept that true hope is born in suffering. I needed to remind myself of that boy, and his father, for whom has taught me:

"Teacher, I brought you my son, who is possessed by a spirit that has robbed him of speech. Whenever it seizes him, it throws him to the ground. He foams at the mouth, gnashes his teeth and becomes rigid. I asked your disciples to drive out the spirit, but they could not." "O unbelieving generation, " Jesus replied. "How long shall I stay with you? How long shall I put up with you? Bring the boy to me." So they brought him. When the spirit saw Jesus, it immediately threw the boy into a convulsion. He fell to the ground and rolled around, foaming at the mouth. Jesus asked the boy's father, "How long has he been like this? From childhood, he answered. It has often thrown him into fire or water to kill him. But if you can do anything, take pity on us and help us. "If you can?" and Jesus. Everything is possible for him who believes." Immediately the boy's father exclaimed, "I do believe; help me overcome my unbelief!" When Jesus saw that a crowd was running to the scene, he rebuked the evil spirit. "You deaf and mute spirit," he said, "I command you, come out of him and never enter him again." The spirit shrieked, convulsed him violently and came out. The boy looked so much like a corpse that many said, "He's dead." Bus Jesus took him by the hand and lifted him to his feet, and he stood up. After Jesus had gone indoors, his disciples asked him privately, "Why couldn't we drive it out?" He replied, "This kind can come out only by prayer and fasting." Mark 17-29

My little one, Olivia's sister was fascinated this summer with Helen Keller. She read her books, watched the movie and did a bit of research on the Internet. She was spellbound to the point that she and her bestie, Summer, began to role play the characters of Helen and Anne Sullivan (Helen's teacher). As I watched them march around in our backyard, I instantly realized that Lauren was playing the part of Helen. She was stomping away, refusing to be held, refusing any help or direction that Summer (Anne Sullivan) was offering. Lauren acted out the fear, uncertainty and unbelief that one would expect from a little girl who was both blind and deaf. Complete darkness. As I watched this adorable free show, I soon felt as if God was bending my ear to whisper that I am much like Helen - only spiritually. The last three years had led me to a spiritually darkened place of confusion and uncertainty. Because Olivia's health had quickly deteriorated, I was blind-sided and began entertaining the fear again. He went on to show me how I was refusing to grasp what He wanted me to hear because my ability to ask Him to help me believe was slowly slipping away.

I have read and reread the Charles Spurgeon sermon 'The Secret of Failure' over and over. It speaks life into my questioning heart and keeps me focused on that very powerful word ------- believe.  Mr. Spurgeon says, "There was faith, even though it was mixed with unbelief. It was a faith that made him pray, as I have already told you, and the Lord Jesus Christ found out where the faith was. He had, as it were, broken the great black lump of dead coal that looked to be nothing but unbelief, and there was the living light of faith burning in the very center of it."

God has had me in the wilderness lately, even with my strong desire to "believe". Living it.......enduring it, learning from it and about it. The Beth Moore Deuteronomy study is timely and deeply educational for my wilderness encamped soul. This study details the Israelite's as they are poised on the east bank of the Jordan River, preparing to finally leave the faithless generation in their wilderness graves, and courageously fight for and possess their Promise Land. The ever-faithful Moses reviews their parent’s failures and gives them courage to fight for the land that God swore to give to their fathers. It calls them to remember who God is and what He has done for them. The mistakes made by their parents should not be repeated. I can imagine how anxious and expectant they felt and the thrill they must have had bubbling out of them at the prospect of finally leaving the wilderness of unbelief for their promise land. "And He brought us out from there, that He might bring us in and give us the land that He swore to give to our Fathers." Deuteronomy 6:23

Have you ever thought about Joshua and his time in the wilderness with all the unbelievers? He was one of two of the spy's, sent to scope out this so called "promise land" that actually believed they could defeat their enemies and take hold of it. He believed; yet he was left to wander in the wilderness for 40 years, right along side the unbelievers. I often wonder if he had any "human moments", like maybe deep down he was angry, even bitter at the rest of his contemporaries for their inability to trust and believe God. Have you ever wondered why we, like Joshua, seem to get pulled into other people's wildernesses? To believe, yet not receive.

God called Joshua to believe and he continued to, even when he was left in the wilderness. It is within these scriptures that I ultimately find the strength to believe --- even though it has been 15 years. The father of the epileptic boy encourages my heart. He teaches me as I fiercely cry out "I believe"; but humbles me in the next breath as my heart is sent after the One that can banish the unbelief that hides in the corners of my suffering. It took me years to figure this gem of a lesson out, but then again I was watching this everyday. And many times they didn't stop:

video


Always thankful for His guidance, and even more thankful for His love and protection over Olivia as we have navigated this painful journey.

"He brought us out from there that He might bring us in and give us the land that He swore to give our fathers." Deuteronomy 6:23





1 comment:

  1. I don't have words for this poignant post. So much brutal honesty and TRUTH in it. I do know our Lord asks us to seek Him deeper and deeper. And your description of Believing I am convinced is the key. I take your words to heart today.

    I also related to your youngest daughter's interest in Helen Keller. I had a childhood friend who I used to do the same kind of Helen Keller role playing with. And currently, I am teaching (I homeschool) my 16 yr old daughter ASL (sign language) and we will be watching both versions of the Helen Keller movie.

    As much as I have been familiar with her story all my life, never have I heard an interpretation such as what you provided above. In teaching my daughter, I am always looking for ways to turn our lessons towards a conversation about God. I am going to use your "lesson" above after she and I watch the movie together.

    Thank you and bless you for your wonderful blog posts, Kelly. They are helping to heal others more than you know. ((hugs))

    ReplyDelete