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.

Tuesday, January 26, 2016

Are miracles always instantaneous?




I've been thinking about miracles a lot lately. Probably because I am waiting and believing for one.




So many of the stories surrounding Medicinal Cannabis as a medication for uncontrolled seizure disorders use this coveted word. Coveted because parents like me want a part of that miraculous effect. Pretty sure I have never personally known anyone who experienced a miraculous healing. I mean, yes, I know many children who have recovered from Autism through diet and biochemical intervention, but to hear of someone receive healing-----someone who was so utterly fatigued, so utterly incapacitated to the point of being unable to speak, and barely drink and eat ------ suddenly recover ------ to regain normal mental functioning ------ like what I am praying for for my precious girl ---- I have not.

But then, out of the blue, I did. Have you heard Martin Pistorius' miraculous story? He is the author of the International Bestselling book "Ghost Boy".



Today Show Interview with Martin Pistorious

I was so intrigued by his interview, I just had to read his book, and when I did my already God given, strong faith skyrocketed.  When Martin was 12 years old he came home from school one day with a sore throat......and never returned. Over the next year he stopped eating, started sleeping a lot, and said his mind started fading away. He fell in a coma for about 4 years..... and then at 16 his brain started waking up, but no one knew it.  He could not communicate that he was in there.....that he understood everything that was going on. His parents were told he had a degenerative neurological disorder to which the cause and prognosis were unknown. Hmmmm....sounds familiar.

But he was in there. And so is Olivia, I know she is. Martin's story flooded my aching heart with confirmation...just in the nick of time. Not sure if I have mentioned that its been 15 years. 15 years of feeling certain that behind those beautiful blue eyes is my girl....knowing she is in there but living with the daily frustration that I've been unable to help her, despite all the attempts; just like Martin's parents.

Martin and Olivia share some similarities. 1) They were both cognitively and developmentally normal 2) both slowly lost the ability to talk.....and then walk.....and their limbs began to curl inward as their families could only watch as they slipped away 3) Both were treated with medication after medication with no success 4) Test after test were run but they found nothing - with Olivia this included genetic testing.  5) Both went beyond the scope of conventional medical treatments.

Olivia in the early stages of losing the ability to walk. We had to tie her to the chair so she wouldn't fall.


His book shows many pictures of him being tied to his chair.


We started to refer to her hands as "claws" just as Martin talks about.




(All pictures of Martin were taken from his book "Ghostboy")

As I read his words I began to feel as though I was hearing Olivia's voice too.... I am certain she probably feels as he did, for instance he said he felt like "A nothingness that is washed and fed, lifted from wheelchair to bed", or that her ".....body ached, the straps on the wheel chair cuts through to his skin... his body aching as he sits for hours every day. He "longed to be with his family, cherishing every moment with them without them even realizing the conversations he played out in his head......if only he had control of his useless body and silenced voice. 

Martin explained in detail the effect his illness had on their entire family, and while reading his story it soon became my families story as my mind started flipping through hard memories that paralleled their anguish. The fights. The darkness. The hope that resided in one while the other searched for a better place where "professionals" could take care of the child's withering body. It's hard to believe when the world's experts have given the definitive diagnosis and His Hope isn't lodged in your heart. The recurring war that would erupt as desperate hopelessness would fight to no longer witness the deteriorating "shell" that once housed the soul of our loved one. Painful. Achingly real. He explains that while sitting there he knew that it was he who has caused the painful suffering to his family, and after each war was over and the silent calm settled into evening, then bedtime and he's in his bed for another night. These powerful words describe his recurring anguish:

"Suddenly I know that I'm not alone. Reassuring presences are wrapping themselves around me. They comfort me. They want me to follow them. I understand now that there's no reason to stay here. I'm tired of trying to reach the surface.  I want to let go, give myself up to the deep or to the presences that are with me now ---- whichever takes me first. But then one thought fills me: I can't leave my family. They are sad because of me. Their grief is like a shroud that envelops me whenever I break through the surface of the waves. They'll have nothing to grab on to if I leave. I can't go. Breath rushes into my lungs. I open my eyes. I'm alone again. Whatever was with me is gone. Angels. I have decided to stay."

This is one aspect of parenting a chronically ill child that many people do not see. The entire family is affected as the parent's hearts break.....and continue to break. The time it takes to be the child's caregiver is immense with feeding, changing, bathing, all in addition to the emotional heartbreak that is present - especially in his case (and ours), where the child used to be normal.

I was overwhelmed as I read Martin's account of knowing that God was with him as his mind began to "knit" back together. Can you even imagine? Martin had no control over his his body as he lay there, depending on people to meet his every need. He talks at length about feeling thankful that he could control his mind and when the fear and darkness overtook him he could use his mind to retreat to a world of imagination where he was able to lose hours, if not days in order to retain his sanity. True bravery. To remain when life beckons to be over. His face is all I see now when I hear the song "Held" Natalie Grant  - a song about loss, a song about unfairness, a song about God's promise to "hold" us when the "sacred is torn from your life and you survive. This is what it is to be loved and to know that the promise was that when everything fell --- we'd by held".

And God held him. For Martin, God was a constant companion. He could feel Him, and was held for 13 years - 4 years while he laid in a coma, and another 9 years during his mind's restoration. We all need to be held --- don't you think? God holds on to us.....even when we resemble a squirming toddler trying to break free from His strong arms. He holds us as we strive, as we run into brick wall after brick wall. He holds us while we try and figure it out. Reading of Martin's strength and courage has put Olivia's situation in perspective. He held me tight, gently pressing my broken heart back together day after day, seizure after seizure....holding me tight since my fleeting flesh longed to escape the daily suffering I was forced to participate in. That right there is the promise, and humility gladly accepts it.

Martin was the recipient of two miracles. He survived an illness that took him into a coma AND his brain was healed. Neither of these miracles were instantaneous, but took years to come to fruition. This is what I am getting at. The concept of Olivia's healing was a seed planted in my heart 15 long years ago, and I believe it will come to pass, even though the world may see it differently. In Martin's case, no one believed for years until a massage therapist "felt" he was in there as she talked with him during their daily massage sessions. Her belief and determination to help him was the beginning of his freedom.

Medicinal Cannabis is the beginning of Olivia's miracle. Olivia's freedom. She continues to make strides like now being able to walk by herself more and more often:



Of course, there are recordings of instantaneous miracles in the bible (like my favorite --- the epileptic son's miraculous healing by Jesus (Mark 9:14-29)), but God also performed miracles that took days, months...even decades. Consider Abraham and the call on his life. God chose him and promised to make a great nation through him and his descendants. The miracle of becoming a father at 100 years old was actually promised 25 years earlier as he accepted God's calling and set out from Ur. The "father of faith's" journey shows how God gives His miraculous strength to us.... to enable us to persevere through the challenges of even the most difficult calling, like Martin's. Perseverance and the testing of our faith work hand in hand as God uses us in what looks like a "delayed" miracle.

Currently I am doing a bible study that starts at the beginning. Genesis. I have done so many of Beth Moore's recent studies, but this is one of her first - 2005 is the copyright, but perfect timing for me. Studying the Patriarch's of the bible enlightens my faith journey as I get acquainted with the struggles of the early bible greats.

Why do you think God chose Abraham's lineage to build into a 'great nation'? I guess I had never thought of that question, but as you dive into commentaries relating to these early days, the answer is really quite simple......Because he would go. I feel I can relate. My choice to go ahead and run with this crazy healing notion that God planted in my heart 15 years ago is worthy of believing, or going with. Others may have accepted, may have given up, may have gotten too weary or pulled away from the opinions of the masses. I was intrigued to learn that God had called Abraham to leave Ur and head to Canaan, "but when they came to Haran, they settled there."Genesis 11:32

The reason they stopped short of their original destination could be Terah's (Abraham's father) health, the climate or fear. For whatever the reason Abraham's calling came to a temporary halt until Terah died. Questions of our long haul have been circulating in my brain since the beginning, to which Beth answered in one short paragraph. What can "Terah" represent in our journey?

"It becomes us to be very careful as to whom we take with us in our pilgrimage. We may make a fair start from our Ur; but if we take Terah with us, we shall not go far...Let us all beware of that fatal spirit of compromise which tempts us to tarry where beloved ones bid us to stay. "Do not go to extremes," they cry; 'we are willing to accompany you on your pilgrimage, if you will only go as far as Haran...' Ah! This is hard to bear, harder far than outward opposition." F.B. Meyer

God can call a group, a family or even a village for a certain task, but that doesn't mean they will choose to believe in the calling. Believing is hard, and for some it can be impossible, but that does not change the call God may have on your life. That's where perseverance enters in. Love enables us to go to the extremes necessary to move beyond our "Haran". I love how Beth asks "how do we explain our callings to those affected? Especially those who have never met the Caller personally?"

I feel my journey has had different stages, just like Abraham (the first recorded believer). His time in Haran is looked at as a period of transition, which God is famous for. Transitional periods of waiting help us depend on him and trust HIS timing. Can we do His will during those times when it seems like he isn't hearing our cries? Like me, Abraham's journey has its moments of bad decisions made out of fear (telling Pharaoh Sarai is his sister), taking things into their own hands (Hagar and Ishmael) and moments of doubt along the way.

But even with Abraham's mistakes he learns that to move back toward God and His will for his life he needs to retrace his steps, just as I am doing with Olivia and her big neurological puzzle. I sense a hearty laugh as you read this. Even Sarah laughed as God and his companions stood outside her tent talking with her 99 year old husband about Sarah having a baby that very time the following year. She laughed, God heard her. She denied it and he said, "Yes, you did laugh". Genesis 18:15

Is anything too hard for the Lord? Genesis 18:14     Obviously not in Martin Pistorious' case. Can you imagine witnessing Martin's miracle? Like watching it play by play as he first began to recognize and name pictures then use them to finally communicate his wants and needs to his parents. What a thrill that must have been. And to be there as his hand steadied and his vocabulary exploded. I don't want to divulge his entire story otherwise you would miss out on his incredible page turning book (which Hollywood is currently fighting over the movie rights). Not to be missed!

Now imagine. You can be here for Olivia's miracle. You have come this far. How awesome for you to be a witness to a miracle in the making! Think a bit about my favorite instantaneous miracle from the bible (Mark 9:14-29):

14 And when they came to the disciples, they saw a great crowd around them, and scribes arguing with them. 15 And immediately all the crowd, when they saw him, were greatly amazed and ran up to him and greeted him. 16 And he asked them, “What are you arguing about with them?” 17 And someone from the crowd answered him, “Teacher, I brought my son to you, for he has a spirit that makes him mute. 18 And whenever it seizes him, it throws him down, and he foams and grinds his teeth and becomes rigid. So I asked your disciples to cast it out, and they were not able.” 19 And he answered them, “O faithless generation, how long am I to be with you? How long am I to bear with you? Bring him to me.” 20 And they brought the boy to him. And when the spirit saw him, immediately it convulsed the boy, and he fell on the ground and rolled about, foaming at the mouth. 21 And Jesus asked his father, “How long has this been happening to him?” And he said, “From childhood. 22 And it has often cast him into fire and into water, to destroy him. But if you can do anything, have compassion on us and help us.” 23 And Jesus said to him, “‘If you can’! All things are possible for one who believes.” 24 Immediately the father of the child cried out[a] and said, “I believe; help my unbelief!” 25 And when Jesus saw that a crowd came running together, he rebuked the unclean spirit, saying to it, “You mute and deaf spirit, I command you, come out of him and never enter him again.” 26 And after crying out and convulsing him terribly, it came out, and the boy was like a corpse, so that most of them said, “He is dead.” 27 But Jesus took him by the hand and lifted him up, and he arose. 28 And when he had entered the house, his disciples asked him privately, “Why could we not cast it out?” 29 And he said to them, “This kind cannot be driven out by anything but prayer.”[b]


Hebrews 12:1 Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us.

You are the witness' to our story. So, if you feel led, share it. If you are on facebook, like our Community Page - it's under the same name - Restoring Olivia - Facebook

To those who are also on a long difficult journey..........................I'm there too.
I'm there too - Michelle Featherstone

p.s. Spoiler alert!!!! Martin Pistorious is happily married and is a Web Designer! Go God!!!!

2 comments:

  1. You are amazing! I am so happy to call you my Gamma Phi sister and most importantly, my sister in Christ! Keep Writing! I love every word! Love in πKE, Julie

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