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:



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





Monday, September 21, 2015

We are home! - Thank you for the prayers!!

Thank you so much for your prayers for my girl!

We were finally able to leave the hospital after a long 10-day stay. She is still not recovered from this huge setback and unfortunately lost a bit of weight, but we are home. Olivia is very fragile and extremely hyper sensitive to any upset in her system - especially when she gets sick.

If you choose to continue reading her story, you will learn my opinions on what I believe caused the decline in her health. It involves the wellness care she received as an infant, and subsequent advice during different stages in her life.

Today, though, I want to celebrate the amazing emergency medical treatment she received while she was at Minneapolis and St. Paul Children's hospitals. I am truly thankful for the caring, wonderful nurses that took care of my girl during that stressful and confusing 10 days and the open minded doctors at St. Paul Children's. They saved her life and I am forever grateful.




Tonight I thought I would share an entry to my journal originally written in August of 2013. We were well into the second year of her health crisis. These were very stressful days.

*********


I’m tired...I’m worn...My heart is heavy...From the work it takes..To keep on breathing (believing) ...I’ve made mistakes....I’ve let my hope fail...My soul feels crushed...By the weight of this (my) world...And I know that You can give me rest...So I cry out with all that I have left...Let me see redemption win...Let me know the struggle ends...That You can mend a heart that’s frail and torn....I wanna know a song can rise....From the ashes of a broken life...And all that’s dead inside can be reborn...'Cause I’m worn...

I know I need to lift my eyes....But I'm too weak, life just won't let up.....I know you can give me rest....I cry out with all I have left...I'm worn....My prayers are wearing thin....I’m worn.....Even before the day begins....I’m worn....I’ve lost my will to fight...I’m worn.....So Heaven come and flood my eyes (Worn, Tenth Avenue North).

Worn - Tenth Avenue North Video


How symbolic this music video is for me. If you haven't taken the time to watch this 4 minute video please do. God has given me so much insight to my own struggling journey through this amazing song. I love how they use the "tree of life" which is barren and worn --- all the leaves dead and laying on the ground. In my rendition, Olivia is the tree, seemingly lifeless and consequently fruitless.  As I watch the sun's brilliance shine upon the tree causing the dead leaves to rise as they turn a healthy gorgeous green, I feel as though it's Him rebuilding her "leaf by leaf". While watching the leaves rise, my mind's eye sees an added scene take place behind the blinders of my heart. 

In this scene, God shows me the leaves being blown here and there as they desperately tried to stay on course to their proper home on the branches. As I watched this, I felt the nudge from Him saying that this 'wind" really represents the things that may have delayed His intent for Olivia's life. The wind, which has blown her leaves around, really represents the fear and anger I have entertained, the fighting Marty and I have partaken in, and of course the plan of the enemy's to stop her restoration. Add to this impatience, pride, unforgiveness and, of course, faithlessness. I've always been so focused on "chasing the wind". The wind is fast and that's how I wanted it to be  ----- hurry up, figure it out, move on with life. Unfortunately, in hind sight I now know I was too focused on entering my promise land with the wind instead of chasing His love, His will and His ways.

I want Redemption to win. Most think redemption means "the action of saving or being saved from sin, error, or evil: "God's plans for the redemption of his world"." For me and my purposes, and what I see and feel about redemption lies within a couple other definitions, namely, an act of redeeming or atoning for a fault or mistake or better yet - "Recovery of something". Redeem, Recover, Rebuild the three R's that are on my heart as I write about my hope for my girl.

Olivia is not doing well. Hasn't been for a while. Sometimes as I try to go to sleep at night, I often think to myself, "What is the point of this?" Really, what is the point? Laura kindly reminded me of the meaning of my name: warrior & defender. I have been a warrior, fighting for my baby girl, but what has the fight produced? I will say it again ---- What is the point? I love the three verses she included with the email:

Isaiah 61:3 To all who mourn in Israel, he will give a crown of beauty for ashes, a joyous blessing instead of mourning, festive praise instead of despair. In their righteousness, they will be like great oaks that the Lord has planted for his own glory. 

Isaiah 61:4 They will rebuild the ancient ruins, repairing cities destroyed long ago. They will revive them, though they have been deserted for many generations. 

Isaiah 61: 7 Instead of shame and dishonor, you will enjoy a double share of honor. You will possess a double portion of prosperity in your land, and everlasting joy will be yours. 

I love these words from her ---- "Faith is the "substance" - like actual weight and matter - your faith for Olivia & your family is not wishful thinking, it's faith - which is assurance! You know, that you know, that you know God is bringing healing. You can't not because it feels wrong or off whenever you entertain that because you already have the substance of faith (which is more than hope)."


I started a new study this past January ---- Beth Moore's The Law of Love - Lessons from the pages of Deuteronomy.  Unfortunately, this study started when Olivia was going downhill on the Phenobarbital and consequently, I was unable to participate in the video showings. Even when I did go, I was either late and/or I was so checked out due to Olivia's condition, I wasn't able to "soak" in the truth that Beth is able to deliver so easily. This summer I decided to buy the CD set and I am now doing a private study with this incredible teacher.

I love soaking in her knowledge. Deuteronomy is the inspired word of God, written by Moses. It is about a generation of people who had been in a long-term rebellion. They were the definition of faithlessness and because of their refusal to believe God; an 11 day journey to their promise land took 40 years. Wandering in the wilderness. Sounds familiar. I see now, I personally spent the last 13 years there.

For many the theme of this book is "Remembering what God has done for us in the past - how he brought us through". For the Israelites, the 40 years of desert wandering comes to an end in this 5th book of the Pentateuch (The first 5 books of the bible).

Moses retold the story of the spy mission that originally happened 40 years ago (numbers 13, 14) the spies were sent out determine where they should enter the land that God had given them. 'See, The Lord your God has given you the land. Go up and take possession of it as The Lord, the God of your fathers, told you. Do not be afraid; do not be discouraged.'

But, they were afraid. They grumbled...'the Lord hates us; so He brought is out of Egypt to deliver us into the hands of the Amorites to destroy us. Deuteronomy 1:27   This idea was delivered by the 12 spies - the majority of the spies were afraid of the giants. But there were two spies - Joshua and Caleb - that had a different report. They said the land was fertile - the enemy was vulnerable and God was on their side. When we focus on the negative we become fearful and immobile. We could choose to believe that God has brought us this far, why on earth would he leave us now? God's direction and promises are the positive that we could focus on - it sounds so easy, like a no brainer - but then feelings and negative circumstances enter the picture and we lose direction.

In the Israelites case, God had already promised their victory, fear that He wouldn't pull through left them stuck. They did not remember the signs and wonders they experienced in the wilderness - or the exodus, for that matter. In my situation, I believe the direction for Olivia is the Gaps diet while being supported by the Pfeiffer supplement therapy until the healing takes place. I have read over and over that when we are confronted with these important decisions we need to move out in faith. The stumbling block for me lies not in failing to focus on the positives, rather, trusting that God will overcome the negatives flips me downward. Maybe because there have been so many intense negative situations in such a short time ----- one after another.

********

This is so hard for me to read. Especially since I am still in my own personal wilderness. It also begs the question - why did Olivia spiral down in 2012?

When I first put her on the GAPS diet, she was doing amazing!!! She gained 10 pounds in 2 months and things finally felt like they were going in the right direction. It was then that we decided to take her off the supplements she was taking from Pfeiffer Treatment Center. Within a month of being off, she crashed and it's been an extremely hard road to get her back on track. Although I received a lot of "opinions" about the supplements and why I was giving her so many, it now appears that they were actually keeping her body stable.

This blog is really about my Wilderness Experience. I am hopeful that as I write you will see me walk into my Promise Land of healing for my girl and our family.



Do you feel as though you have been in the Wilderness lately?


Do you feel God's leading?







Friday, September 18, 2015

Happy Birthday Beautiful!

I am sitting here at the hospital on my sweet girls 17th birthday. What on earth has happened? Never in a million years would have I guessed this is where we would be at this stage of her life. Never.  It is almost as though her life has been suspended in time. The years go by and her generation has grown up, yet she is still in that hedged off space. A place that I haven't been able to reach her. In many ways I am still back here:



Here she is 10, before significant regression. This is before my heart was broken beyond repair. Now, she lay in a hospital bed recovering from what started as an infection and worsened by a bad reaction to a medication. 

As I am sitting here listening to the radio, Morgan Harper Nichol's song Storyteller comes on and tears start flowing down my face. Why? Because I know I need to tell her story.

On a Sunday evening I'm
looking back over all the years
and where I've been
Looking at old photographs
I'm remember
you were right there,
and you have been ever since

With every page that turns
I see your faithfulness

Oh the mountain where I climbed
The valley where I fell
You were there all along
That's the story I'll tell
You brought the pieces together
Made me this storyteller
Now I know it is well, it is well
That's the story I'll tell

There were some nights that felt like
They would last forever
But you kept me breathing
You were with me right then
And all that you have done for me
I could never hold it in
So here's to me telling this story
Over and over again

Take a listen to this wonderful song:


If you are listening to the music I have running, scroll down and hit the pause key so both songs don't play at once. :)






Thursday, September 17, 2015

Olivia is in the hospital :(

Hi everyone. Welcome to Olivia's blog. I actually started this blog in January 2012 and subsequently abandoned it in July of that same year when Olivia took a dive for the worst. I decided to resurrect it today as a sort of "Caringbridge" tool because so many amazing people have been reaching out with their support and prayers. Many of you have questions as to what exactly is going on with her. That question has been the journey of a lifetime; unfortunately, not in the good sense of the word.

I have renamed my blog www.restoringolivia.com. I tried to get www.oliviasrecovery.com (the former name) but it was unavailable. The more I thought about it though, the more I felt like it was time for a new beginning. My hope is that God will be restoring her in this new season; a season brimming with new knowledge, new treatment options and new hope.

Recovering and restoring are very similar, but I began thinking of the word recovery differently. I think of "recovery" in relation to recovering from a drug or alcohol addiction, an action of regaining possession of something, or "recovering" a body. It no longer feels right. With 'restore' I feel it's more about God's restoration of ones health. One source defines 'restore' as "to bring back to a state of health, soundness, or vigor", or better yet "to bring back to or put back into a former or original state".

When I googled "God Restores" I knew it was right because this verse popped up and filled my heart with confirmation:

"God, your God, will restore everything you lost; he'll have compassion on you; he'll come back and pick up the pieces from all the places where you were scattered. No matter how far away you end up, God, your God, will get you out of there and bring you back to the land your ancestors once possessed. It will be yours again. He will give you a good life." Deuteronomy 30:3-13 (The Message)

I claim this verse for Olivia.

This blog is intended to document her healing journey as well as my spiritual journey. For those of you who are interested in her story, feel free to read my past postings. This is our story - Olivia & my family. This is what has happened to our lives and in no way do I want to debate the controversial information I talk about throughout my blog. If you don't agree with it or like it you can choose to not read it. It is my family's reality and the story of a Momma fighting for her girl.