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.


Saturday, December 31, 2016

So long 2016 - glad to see you go.

What a year - huh? Not really what I expected but acceptance can be freeing.

These last couple months have been a roller coaster ride for our girl. Opportunities to celebrate quickly turned to obstacles, which then turned to questioning. Have you ever felt that way? I think every virus out there made itself known in Olivia's fragile system. Just as she conquered one, a new one swiftly jumped in to wreak havoc on her struggling immune system. The silver lining? She was strong enough to avoid a hospital stay, which, in my book is celebration worthy.

2016 revealed so many new pieces waiting to be placed....to be interlocked together for the bigger picture to emerge. Unfortunately, though, it's timing continues to lag. Pursuing God's wisdom for restoring Olivia became a priority for me in 2016.  That's just what happens when answers do not surface by the world's experts, and my advocating heart knows there is much more to her story. The journey alone settled my heart, quieted my mind, and defined my role so I could patiently wait for wisdom to make it's way to me.

As this frustrating year comes to a close, I reflect on the lessons it has afforded me.  I see my struggling with unrealized dreams for her progress, but see promise in the new pieces to her puzzle. I continue to learn how to increase my faith while facing signs of defeat. I am grateful she always rebounds. Olivia's health continues to ebb and flow, which is frustrating at the very least, but telling at the most. The new pieces truly tell her story.

Do me a favor.... Don't feel sorry for me that our journey hasn't yet taken off. Don't feel embarrassed for me - you know, like feeling embarrassed for someone as you watch them make a fool out of themselves.  I'm not embarrassed and there is no way I will give up now. It's always darkest before the dawn. So many people feel inspired as they put faith in science to figure out cures for so many diseases. If we can have faith in science, why is it crazy to have faith in God --- that he can point us to the cure, that he can effectively lead us out of the dark.

I love this word by A.W. Tozer:

"God wants us to trust Him in the dark.

'I will go before you, And make the crooked places[a] straight;
I will break in pieces the gates of bronze, And cut the bars of iron.
I will give you the treasures of darkness, And hidden riches of secret places,
That you may know that I, the Lord, Who call you by your name,
Am the God of Israel.'  Isaiah 45:2-3

It is heartening to learn how many of God's mighty deeds were done in secret, away from the prying eyes of men or angels. When God created the heavens and the earth, darkness was upon the face of the deep, when the the eternal Son became flesh, he was carried for a time in the darkness of the sweet virgin's womb, when he died for the life of the world, it was in the darkness, seen by no-one at the last. When he arose from the dead, it was the very early in the morning, no one saw him rise. It is as if God was saying, 'What I am is all that need matter to you, for there lie your hope and your peace, I will do what I will do and it will all come to light at last, but how I do it is my secret. Trust me and be not afraid.' With the goodness of God to desire our highest welfare, the wisdom of God to plan it and the power of God to achieve it, what do we lack?"

These words remind me that God often does his work in the dark, that his sovereignty in Olivia's life trumps my feeble attempts at "helping" him with his plans for her. In my last post I mentioned that it's like "feeling my way in the dark" when it comes to helping her. All attempts have not proven worthy. I may feel invisible, but I see the light, even if it's the size of a pin hole. It's bright enough to give me hope that He is indeed working in the dark, with his still small voice. I love this Chris Tomlin song "Winter Snow" sung by Audrey Assad. In my mind it describes how he works with us, and when we are moving a million miles a minute, like I have been for the last 16 years, we miss his gentle leading.

I feel stronger than ever as the year comes to a close. Refining and remolding has been good for me, even if they were relentless teachers. Thank you for continuing to follow our journey.

If you want to go fast, go alone. If you want to go far, go with God. 
(the African proverb version ends with "go together".)

Friday, November 11, 2016

More pieces to her puzzle ---- so now what?

New tests. New results....with different findings. New Pieces to her puzzle!!!

Specific, individualized testing that is 100% Olivia, her genes and only hers. This is the kind of information I wish I had 16 years ago. With new information comes a new strategy...one that has emerged in the last couple months. A new strategy pointing her and I down a new path.

For so many years, everything I tried for her was based on information for the "masses". We tried medication that worked wonderfully for most kids, but it didn't work for her. Biochemical supplement regime's that miraculously healed many children who regressed during toddler hood, but nope, not for her.  Olivia always was the one that the intervention did not work.

Searching for answers to complex health issues is never easy.  Right? Often times these answers are referred to as "pieces to a puzzle" since most stories like Olivia's seem to be "mysterious" conditions that are not identified and/or explained in the medical community. Sigh.

Sometimes, I think that I find new pieces and am hopeful for a moment until trial periods pass without any significant change. More recently though,  I have learned that the medicines she's been on are like wrong pieces jammed into place, forcing adaptation of her unique puzzle until the edges are bulging out of place. Bulging and......causing problems. But, as we know, a puzzle piece either fits or doesn't fit - there is no in between.

I've referred to her chronic illness in past posts as "Metabolic Mayhem" and there is a reason. Her hypersensitivity to any changes in her system sets her back until homeostasis is reached again. Dictionary.com defines homeostasis as : "the maintenance of metabolic equilibrium within an animal by a tendency to compensate for disrupting changes."

Many times this can take days (magic number seems to be 4) or in some cases weeks. Why am I telling you this? Well.....even though I have new test results with new pieces, making the necessary changes in her diet, her medicine and her supplements mess up any homeostasis she has. I kind of liken it to turning a big semi around on a two lane highway. Although seemingly impossible, with the right care and time it most certainly could be done.

Moving forward with hope, I view these new test results as the straight-edged pieces that, when locked together will construct the outline or the border separating where the remaining pieces will be housed, with hope they will interlock perfectly. I have always done my puzzles that way - get the frame done first, then fill in with groups of related colors/images. Not only do I have a new direction with new information, but also, I finally have several different doctors/experts who understand what went wrong and may know how to systematically piece Olivia's fragile little body back together - piece-by-piece.

Although weaning her off the Keppra has been a rough piece withdrawal, it must be done. Her inability to break it down leaves a bigger mess for her fragile system to deal with. So many changes.....such little time. Yes, I am still weaning her. Ugh.

I must admit something. I haven't written because I feel somewhat embarrassed. My pride envisions amazing updates for you, but the material just isn't here yet. Right now her story looks pretty much the same. Really good weeks are followed by an illness that takes her down for a week or more. I feel a wave of relief when she is finally able to crawl out of the black hole that sucked the life out of her. I continue to be eternally grateful for the Medical Cannabis, it is the only thing that has given her the monthly reprieve.

She has gone from not being able to get out of her wheelchair as depicted here:

To walking on her own for days on end as depicted here:

Medical Cannabis is a miracle maker! I'm thankful and I want more of this sort of good!

I'm not very good with disappointment and setbacks.  God has sort of been silent at this stage of the game, and that's ok. I choose to go deeper with him. I pray. I repent. I forgive. I believe. I withhold the will of my struggling heart to shout "What's taking so long Lord"?!

I was talking with a friend the other day. A friend that knows the difficulties Olivia has faced with non compliance of almost everything we've tried. She said such a profound statement. She said, "It's like feeling your way in the dark." That is my journey in one sentence. Feeling my way in the dark. Remember.....I've been walking this road for 16 years, not 16 days. Being alone in the dark isn't fun; it can be down right scary. No wonder I'm always so scared. Scared of making the wrong change. Scared of making too large of a change. Scared I'm not moving fast enough. Scared I am moving too fast. Scared I'm not giving her body a chance to adjust. It's just so exhausting isn't it?

Olivia's path to wellness isn't clear, like so many other people who suffer from complex chronic illness. We pray for that miracle. We partner with God with faith. And we wait.

Remember the story of the missing axe head in 2 Kings 6:1-7? It's the story of a couple of men who are set to build a house. While working, their borrowed axe head flew off the handle and landed at the bottom of the Jordan River. The most important tool for them to move forward with their plans of rebuilding is lost - down in the deep, dark water. There is no way they could find that master piece on their own. I can relate......it's like feeling your way in the dark.

Their answer was Elisha - a powerful prophet of God's. After learning where it had fallen, he took a stick and threw it to that spot and the axe head floated up to the top where they were able to grab it and move on with their building. They wouldn't have found it without him.

They had Elisha, we have Jesus. Only the True Healer knows the way out of the dark and that is who I am trusting.  Remember, his "perfect love drives out fear" (I John 4:18), which includes my fear in the dark corners.....the dark shadows of her complex puzzle. He stops me from expressing the human reaction to fear --- the feeling of needing to run away, abandon my hope and take flight.

So what do I do? I wait - preferably patiently. I identify with Habakkuk. He was told:

For still the vision awaits its appointed time;
    it hastens to the end—it will not lie.
If it seems slow, wait for it;
    it will surely come; it will not delay. (Habakkuk 2:3)

Onward is over rated - I point you Upward until next time!


Monday, September 19, 2016

Olivia is excited to show what she's been able to do consistently for a while! Just in time for her Golden Birthday - 18!!

Never once, had it occurred to me as I laid my eyes on my golden-haired blue eyed baby girl, that I would be changing her diaper and helping her out of her "crib" on the morning of her 18th birthday. She was perfect.

All morning I have oscillated between scores of emotions as I consider that she is now a young adult. Gone are her childhood years. Over. Never will she take part in the things of childhood that each and every mother swoons over as her little cherub's age. I think it may be harder because she did develop normally until 2. I got to witness her emerging personality. The silliness, the stubbornness and of course her sweet soft voice. She was incredibly smart. I remember once when she was 7-months old and we were in the kitchen. I asked her "Where's your nuky?" She immediately worked her way out of my arms and crawled to the other side of the house to her room. Once in her room, she crawled under her crib and came out from under with her nuk in her mouth! Smiling ear to ear. So proud of herself! I was amazed!!

Thankfully I was able to witness the sweetness of her as a toddler, but then she was gone. It's hard to not mourn that she was now a shell. She had withdrawn into a sea of neurological mayhem. Silent and suffering with daily seizures.

I completely missed out on the innocence of a 4-year old learning the first shreds of independence, silent to toddler church favorites like "Jesus Loves Me".  Fabricated memories are all I have of her turning 6.......imagining her to be wide-eyed with excitement over her first tooth fairy visit or the belief in Santa and his reindeers and elves. I'll never forget that first Christmas as Marty and I lay next to each other, completely numb.....completely silent as the tears streamed down our faces in the dark of the night.

No longer can I think about the hilarity and confusion of being a tween girl and the coming of age as a teenager, with each and every milestone on the way. The first crush. Confirmation. The driver's license. First dance. Prom. Graduation. It's over and there is no getting it back for her. There is immense emotional loss when you lose your child to Autism and neurological disfunction.

But here's the good news. We're on a different path. A straightened one. One that honors faith instead of long hours of labor. Wisdom has spoken and several new pieces of Olivia's puzzle have been revealed.....as promised.

I refuse to mourn her lost childhood years any longer because the hope that resides in me now fuels my passion for the new milestones Olivia will conquer. For those who follow my blog...... remember my last post? I dived in head first to discover the Will of God on healing. With that information I started taking different steps; seeking wisdom from other experts.

And this is where the healing begins. Remember the story of the three lame men that Jesus and his disciples healed in the bible? Here's a refresher:

Jesus Heals a Lame Man
Afterward Jesus returned to Jerusalem for one of the Jewish holy days. Inside the city, near the Sheep Gate, was the pool of Bethesda,[a] with five covered porches. Crowds of sick people—blind, lame, or paralyzed—lay on the porches. One of the men lying there had been sick for thirty-eight years. When Jesus saw him and knew he had been ill for a long time, he asked him, “Would you like to get well?” “I can’t, sir,” the sick man said, “for I have no one to put me into the pool when the water bubbles up. Someone else always gets there ahead of me.” Jesus told him, “Stand up, pick up your mat, and walk!” Instantly, the man was healed! He rolled up his sleeping mat and began walking! John 5:1-9

A Lame Man Healed
Now Peter and John went up together to the temple at the hour of prayer, the ninth hour. And a certain man lame from his mother’s womb was carried, whom they laid daily at the gate of the temple which is called Beautiful, to ask alms from those who entered the temple; who, seeing Peter and John about to go into the temple, asked for alms. And fixing his eyes on him, with John, Peter said, “Look at us.” So he gave them his attention, expecting to receive something from them. Then Peter said, “Silver and gold I do not have, but what I do have I give you: In the name of Jesus Christ of Nazareth, rise up and walk.” And he took him by the right hand and lifted him up, and immediately his feet and ankle bones received strength. So he, leaping up, stood and walked and entered the temple with them—walking, leaping, and praising God. And all the people saw him walking and praising God. Then they knew that it was he who sat begging alms at the Beautiful Gate of the temple; and they were filled with wonder and amazement at what had happened to him. Acts 3:2-10

Jesus Heals a Paralyzed Man
When Jesus returned to Capernaum several days later, the news spread quickly that he was back home. Soon the house where he was staying was so packed with visitors that there was no more room, even outside the door. While he was preaching God’s word to them, four men arrived carrying a paralyzed man on a mat. They couldn’t bring him to Jesus because of the crowd, so they dug a hole through the roof above his head. Then they lowered the man on his mat, right down in front of Jesus. Seeing their faith, Jesus said to the paralyzed man, “My child, your sins are forgiven.”But some of the teachers of religious law who were sitting there thought to themselves, “What is he saying? This is blasphemy! Only God can forgive sins!”

Jesus knew immediately what they were thinking, so he asked them, “Why do you question this in your hearts? Is it easier to say to the paralyzed man ‘Your sins are forgiven,’ or ‘Stand up, pick up your mat, and walk’? So I will prove to you that the Son of Man[a] has the authority on earth to forgive sins.” Then Jesus turned to the paralyzed man and said, “Stand up, pick up your mat, and go home!” And the man jumped up, grabbed his mat, and walked out through the stunned onlookers. They were all amazed and praised God, exclaiming, “We’ve never seen anything like this before!” Mark 2:1-12

And, of course, my absolute favorite:

When Jesus saw that a crowd was running to the scene, he rebuked the impure 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.” But Jesus took him by the hand and lifted him to his feet, and he stood upAfter 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. Mark 9:25-29

Stand up Olivia, and leave that chair!

Her strength and endurance has gained momentum over the last several weeks. As of this writing she still needs the chair for safety, but my hope is that it will soon be parked in the corner and some day out the door! This video was taken on her birthday (yesterday), and she was walking in the back yard for about an hour. She just loved her new found freedom!! To be honest, she still has some bad days with seizures but they seem to be getting fewer and far between.

Faithful readers! God is Faithful. Even to those of us that have been waiting for years and years. Remember this post from September 21, 2015? Olivia had been in the hospital for 10 days and I was completely worn!

Just one year later and I am finally on the right path! It reminds me of the Beth Moore Deuteronomy study I did in 2013.  One of the main goals in her series was to help people "regain their vision", or in my case - "discover her puzzle pieces", what went wrong and what are the pieces I need to get her on the road to health again? I've seen a lot of smart doctors (both conventional and alternative) and they haven't been able to figure it out. Beth shows the word "See" being used 29 times in the book of Deuteronomy. He wants to point us in the right direction.

"See, I have set the land before you. Go in and take possession of the land that the LORD swore to your fathers, to Abraham, to Isaac, and to Jacob, to give to them and to their offspring after them." Deuteronomy 1:8

He humbles me. His willingness to hold on tight encourages me. He has never given up on me and my fight for her. The true revelation He has for me comes as I watch Tenth Avenue North "Worn" video one more time.

As my eyes are glued to the screen, and I am belting out the memorized lyrics, He grants me the vision of a lifetime ----  the green leaves, which previously were brown, as they float upward toward the branches turn into puzzle pieces. As they rise, they are Meticulously joined together. He grants me the sweet vision of running toward the base of the tree where He is waiting. In no time flat, I am in His amazing strong arm as He points up to the puzzle pieces in flight, as they move to be joined. I look down his arm, to the end of His index finger and there is the tapestry of Olivia's life as a completed puzzle. This time, with my soul quieted, I am able to hear Him whisper, "See......See".

Friday, August 26, 2016

Update on Olivia

Hey.  :)

Again, it's been a while. My summer is screaming by (like everyone else) and between necessary house projects and activities for my two other children, my thoughts on Olivia's "summer of weaning" have been swimming around and around in my head, just itching to get out and find their way to you. We had a little bump in the road early in the weaning schedule. As easy as it sounds, it always becomes complex and difficult.

As mentioned in a previous post, we met with a Pharmacogenetics doctor and he performed a couple new blood tests that revealed that Olivia lacks the enzymes necessary to break down the Keppra properly (remember.....I have been saying she can't handle it for years). In a nut shell, because she lacks those enzymes, over time she becomes toxic on the medication and it starts causing problems (in her case, more seizures and a host of other serious side effects). The natural response to this is to just get her off the drug, but going too fast has also caused problems due to her hypersensitivity to change. Believe me, if I could just stop it right now --- today --- I would love to but it's just too abrupt for her sensitive.....complex......fragile nervous system. So, for the time being she will be on some of it until we get her completely weaned off.

Thought I would share a picture of a tile I made with Lauren during Olivia's stay at Children's Hospital this past May. Over the last several years, Lauren's company during long hospital stays has been a much needed respite from the stressful, long days of unsuccessful seizure control. On this particular day, we walked down to the sibling play area for some distraction. Immediately upon arrival, I laid down on a comfy couch as she sat down to participate in the day's art project. But soon, the begging and pleading for me to participate took hold and I found myself digging through jar after jar of fun, colorful accents to glue to the blank tile that was laying out in front of me.

Tired from late night wakings --- I just kind of winged it.  As I glance at it today, I realize the symbolism that screams from the artwork I created on that stormy day in May. It conveys the message of our story and my writing on this recovery blog. How is it that I've been able to cultivate this crazy ability to believe in an impossible looking dream?

I feel compelled to inspire you to believe in the miracle of healing, rather than in just instantaneous "miracles". I see my heart, once broken and submerged for over a decade in the deep, dark, murky waters of unrelentless chronic illness; finding it's way to the surface where the light is. At the surface, finally able to see true transformation -  like the butterfly emerging from it's chrysalis to find it's new life and much needed freedom.

I know what you may be thinking - it all sounds well and good....even inspirational, but when is it going to start happening? You know - the transformation I've been believing for. I can write about faith, belief and healing until the cows come home but when will it start to materialize? 

I kind of set you up in the beginning -- right? I told you that by following our journey you could be witness to a healing miracle.....although I did warn you that it may take some time.  I kind of look like a failure. No one wants to look like a fool. Believing in the unseen has it's side effects. I mean, yes, we have seen a hint of it. Like a pinch here, a dash there, but nothing sustainable. A couple weeks/month of no seizures and walking on her own and then a tough patch - ugh. Medicinal Cannabis is an amazing start, but I want more. Am I being unreasonable? Is acceptance of her life of suffering more reasonable? More accepted?

Remember this scripture? "Hope deferred makes the heart sick, but a dream fulfilled is a tree of life." Proverbs 13:12  ---- things can appear deferred.

Does God always want to heal? Is it God's will to heal everyone? Is it His will to heal Olivia? Those are good questions! Gosh dang it! I needed to educate myself on this subject matter because many I have talked with about believing for this healing have asked me if I know if it's God's will. "Why wouldn't it be?", was my immediate, knee jerk reaction. I realize it's been a long time (16 years) and it looks impossible, but can't God make everything possible? Am I too naive? Is my thinking too childlike (wait a second, that's the kind of thinking we need for faith - right)?

This summer I picked a book off my bookshelf that has been sitting there for about 8 years. "Christ the Healer" by F.F Bosworth. A friend gave it to me and I always had the intention of reading it - and I tried, on several occasions. It was written in 1924 and for some reason each time I cracked it open I became distracted and it was soon repositioned on the bookcase during a bi-weekly clearing off of my bedside table.

But now, I am serious. Serious about learning about God's will on healing --- and these are a couple highlights that stuck with me (remember.....I am not a pastor, or a theologian. I'm just a Momma seeking wisdom for the healing of my girl. Seeking. Knocking. Waiting. Wanting to tap into His Ways):

  • God's word is the seed. Until the person seeking healing is sure from God's word that it is God's will to heal him, he is trying to reap a harvest where there is no seed planted. It would be impossible for a farmer to have faith for a harvest before he was sure the seed had been planted. 'He sent His Word: it healed them' (Psalm 107:20) The farmer does not dig up the seed, he trusts the seed will do it's work.
  • While on earth Jesus healed them all, not just some. See Luke 4:40, Matthew 4:23-25, Matthew 9:35-36., Matthew 8:16-17, Acts 10:38...I could go on and on. My favorite, however, is Mark 9:14-29 about the epileptic boy whom the disciples could not heal, but Jesus did. I love what Mr. Bosworth says about this scripture I've referred to over and over in my writing. He says, "By healing the epileptic (Mark 9:14-29) Jesus proved it to be the Father's will to heal even this one whom the disciples, divinely commissioned to cast out demons failed to deliver. We see by this verse that it would have been wrong to call in question and to teach God's unwillingness to heal because of this failure on the part of the disciples. Jesus, by healing shows them that the failure proved nothing but unbelief."
  • Some think healing only referred to his earthly ministry but the bible clearly teaches that He only began to do and teach....and heal...He continues through the Holy Spirit. "I tell you the truth, anyone who believes in me will do the same works I have done, and even greater works, because I am going to be with the Father." (John 14:12)

The bible speaks of expectations. Expectations of healing, expectations that become solid after truly believing; but the world only educates on acceptance --- on complacency, or contentment. Those who choose to believe that Jesus' healing days are limited to bible times most often refer to Paul's "Thorn In the Flesh" scripture:

And lest I should be exalted above measure by the abundance of the revelations, a thorn in the flesh was given to me, a messenger of Satan to buffet me, lest I be exalted above measure. Concerning this thing I pleaded with the Lord three times that it might depart from me.  And He said to me, “My grace is sufficient for you, for My strength is made perfect in weakness.” Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me. Therefore I take pleasure in infirmities, in reproaches, in needs, in persecutions, in distresses, for Christ’s sake. For when I am weak, then I am strong.  2 Corinthians 12:7-10 New King James Version (NKJV)

Paul asked God to remove his thorn and God said "No" ---- three times --- non the less. Those who believe this line of thinking against the ministry of divine healing ---- against the possibility of miracles --- are of the opinion that "God is the author of disease, and that He has chosen some of the most devout of His children to remain sick and glorify Him by exhibiting fortitude and patience." Did God strike Paul, one of His most humble servants with a sickness and then refuse to heal him? Is the very idea of healing not applicable for our day?

Mr. Bosworth's intense study of the word reveals that in all the instances the word "thorn" is used in the bible, sickness is not the intended meaning. In one, it referred to the Canaanites, for David it was the son's of Belial and for Paul it was the messenger of Satan. Always a person -- never a disease. This phrase really had me thinking ----- "a messenger of Satan to buffet me".

Buffeting. The definition is confirming. Who can't relate to the feeling of being buffeted?

Definition - To strike against or push repeatedly. the action of striking someone or something repeatedly and violently. knock (someone) over or off course.

To strike against forcefully and especially repeatedly; batter: winds that buffeted the tent.
To cause repeated difficulty or harm to (a person or group).
To force one's way with difficulty: a ship buffeting against the wind.
(Of misfortunes or difficulties) afflict or harm (someone) repeatedly over a long period.


That's it! This explains so much, because how in the world could I be so unlucky...so wrong....so, um fooled. God's will is for Olivia to be healed, but who do I listen to? Unfortunately, for the last 16 years I have chosen to listen to experts who fully admit they do not understand why Olivia is having seizures and why a medication does not work. Her neurologist just confirmed this again at her last appointment. Over a million people live with uncontrolled seizures, and that is just the United States. Why on earth did I continue to listen when time after time, year after year the answer's were just as wrong as they were on day one? I chose to rely on them, even when they have no idea what caused her to disappear behind those beautiful blue eyes.

Several months ago I had one of the most vivid dreams I have had in a very long time. I was dropping my younger daughter (Lauren Faith) off at an ice skating party with friends. As I looked down at her sitting to my left, she was lacing up her skates. In a moments notice, I glanced to the right and the rink had transformed into a huge bay of water with rolling hills surrounding it with thousands of people sitting together talking. Soon, I too was sitting amongst the masses and all of a sudden a huge "Loch Ness type" monster surfaced in the water and instantly locked eyes with me. Before I knew it, his enormous, long neck made its way toward me as Lauren (faith) clung to me.

It was obvious I was his target, and as his huge head came barreling towards me. I stood my ground - but he like, nudged me. Soon, I realized that although intimidating, all this big monster could do to me was this weird nudging thing. He took his nose and came up to me and nudged (buffeted?) me over and over. I felt as though I was in a movie, falling over, holding onto Lauren as he pushed and prodded me across the hill until I finally woke up. It wasn't until I read Mr. Bosworth's book that I realized this was buffeting, and that I have been buffeted for 16 long years.

Buffeting for me (and Olivia) has included......medication failures........broken bones due to falls from seizures....relationship difficulties......wrong decisions........choosing wrong doctors/practitioners....decisions based on fear.....decisions based on untruths and guesses

It's clear that these things were allowed, but somehow I can rest knowing that with God's help, I chose to become stronger through each one of these "distresses and persecutions". It's incredible to pull these pieces together and realize that I am stronger because of the constant nudging and it reinforces my interpretation of this dream that all he could do was nudge me. He could not take me out or destroy me.  I'm just too fierce for that.

So, that got me thinking. I'm only fierce because of Him ---- Paul said it, right? "For when I am weak, then I am strong".  Did He allow that junk or did I choose it in some weird way because of the choices I made for Olivia's health.....the advice I took from people I trusted, who ended up being wrong....dead wrong on how to build a healthy immune system.

Just like the Israelites, I never questioned my influencers. I blindly trusted them over what God was clearly saying and I wasn't listening because my eyes were focused on them, not Him. Their diagnosis. Their prognosis. Their belief to try the tools from their toolbox over and over again.

God enables me to be fierce for Olivia, because His love for her is for good. Like the song Fierce by Jesus Culture teaches.  "He wants to answer, He's relentless in pursuit, He rushes in to meet us wherever we are. How could we be lost when He has called us found?" His Love is fierce, and at the end of the day, we all know that it takes someone strong to make someone strong (Proctor and Gamble Mother's Day campaign slogan).

It is not God's fault when the physical healing doesn't come. It's man's. It's a hard realization. A friend of mine sent me this comment about God's will in healing from Bill Johnson at Bethel Church, California.

"When we submit the things of God to the mind of man, unbelief and religion are the results. When we submit the mind of man to the things of God, we end up with a renewed mind that enhances a life of faith. The mind makes a wonderful servant but a terrible master."

I made choices presented to me from the influencers I chose to have in my life. Choices have consequences that unfortunately need to be played out. I feel it's not a coincidence that I am writing on this subject while weaning her off the Keppra. Things are tough right now. Weaning off anything is difficult with Olivia because she is so hypersensitive to change. I would call it "Metabolic Mayhem". It's also not a coincidence that my beautiful sister sent me this quote along with a birthday wish last week:

I will begin putting the things I learned in my study of God's will into practice. A big one for me is to stop focusing on her symptoms. Each and every one of those darn seizures are meticulously recorded and fretted over. Renewing of my mind is crucial and shying away from observing those "lying vanities" (symptoms) as Jonah did while lying in the belly of a fish. (Jonah 2:8) I want to be fierce. I want to do as much as I can to align my situation with God's will. I can confidently say Thy Will Be Done Lord.