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, April 27, 2021

The Boy (Girl) Who Cried Wolf

Long time no see❤️

This little fable popped into my head the other day. I was thinking....To some it may look as though I've cried wolf on this journey with Olivia. As I pondered this comparison, I realized that I've done it many times throughout the years. It's gone something like this:

"I think I know what happened."

"I know this drug will help her."

"I know the Ketogenic Diet will stop them."

"I know this intervention is what she needs."

"I know that I know that I know, that this will help her."

And so on, and so forth. Year after year after year.......after year.  

It was just so odd. Completely normal little girl - out of the blue starts having shaking sessions. 

The boy in the popular fable was a trickster, he was seeking attention, and felt he only got it when his life was in peril. After being tricked many times, his family and friends began to question him, retreating from his cries to his very detriment - for when the wolf was real, his cries landed on deaf ears.

The shaking sessions ushered in an unwanted life of peril for Olivia, and I've been her voice.  Her voice was silenced. I'm not a trickster, I'm not seeking attention. I'm not a liar. I'm a Momma set on a difficult journey, holding onto all sorts of hope for my beautiful girl. My cries are far different. I'm crying out FOR her, from a lonely, isolated place where believing seems to be a false flag. "Believing" cries that now sadly rest on deaf ears because there hasn't been any substance. I get it. I would question it too. For some odd reason, I've felt like I'm supposed to share her story with you. Some days I feel like saying "Hey you....do you want  to follow this crooked path?" Only to find myself cowering in the corner with the blinds drawn shut, the very next day.

I've had a difficult time since the hospital stay from hell three long years ago. It was the ultimate trigger for a downward spiral for both Olivia and I. 

Just being real.

Don't get me wrong. Olivia has recovered to 90% of her baseline pre-hospital status - all except the walking. I count my blessings everyday that she defied the post hospital prognosis. She can lift her head. She can eat (no feeding tube). She can sit on the floor by herself. Everything, but the walking. For me, I've dug myself out of that self-pity pit. I've moved from anger, resentment, bitterness, doubt & unbelief.  Some of you may have been around during this and I'm sorry if you were caught in the crossfire.  I've repented my screams that "He's not coming through for me, He's not coming through for her". Everything, but her complete healing. The healing I've dreamed of for 20 years that seems to consistently go off course to a crooked kind of scenario that takes months, if not years to recover from.  

There is a theme in my dreams that have been happening for 20 years - that theme is loss. Last night's dream was no different. I had a clinic appointment and went in to check-in. The receptionist told me that my appointment was actually the next day, but she said I could wait. While waiting, I decided to use the restroom and was instructed it was just down the hall. As I started walking, the hall became longer and longer until at one point I walked through a ballroom where people young and old were dancing.  I became tired and worried about getting back to my appointment. When I finally returned, the clinic was closed and I had to try again tomorrow.

My dreamworld mirrored my existence. I was always searching. Always studying, researching. Going down long halls of information while watching all my friends & family living their lives, dancing to the melody of life in a giant ballroom. As they enjoyed their toddler, I was searching. While their children moved through the school system, I was distracted by the distance of my walk, only to find out I was always early, never on time. Fighting an overwhelming feeling that I had lost Olivia and could never make it right, never get her back and feeling a weight of responsibility that is so emotionally crushing that, at one point in 2018, as I took her damaged body and soul home after that last hospital stay, I became so lost I did not know how to even find the hallway back.

Distraction became my friend as I watch her lay on her back, unable to even lift her head. 

It was too much.

Feeling betrayed by my journey, I distracted myself with other things. Distraction from the pain. Distraction from the betrayal of a 3 month hospital stay, or was it a different kind of betrayal? I'm still processing that one. I threw myself into a new passion ----- my passion with photography that I never pursued because I was stuck in the hallway.

Then, 2020 hit and we were all stuck in the hallway with new fears, coupled with more loss and more deceptions. Olivia's therapist mentioned this revolutionary thought..... 2020 actually carried with it a possibility of seeing life with actual 20/20 - looking back on things with a clearer image - because we all know that looking back often renders the vision of our mistakes or missteps done in the heat of the moment, or simply due to the  lack of knowledge we possessed at that time. This was Truth for me. I could never help her because I never knew how the injury damaged her, and I wasn't alone. Not one doctor I took her to knew what was happening to her.

I was a willing vessel to lose that ignorance, but as I've found out recently I was always before my time. 

A friend shared her husband's view of me - Tenacious. 

Tenacious - 

  • tending to keep a firm hold of something; clinging or adhering closely.
  • not readily relinquishing a position, principle, or course of action; determined.
  • persisting in existence; not easily dispelled.

Tenacious people move past the criticism and judgement. They have a goal. That's it. God obviously knew what He was doing when he created me. That definition reminds me of a favorite quote by Theodore Roosevelt:

“It is not the critic who counts; not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood; who strives valiantly; who errs, who comes short again and again, because there is no effort without error and shortcoming; but who does actually strive to do the deeds; who knows great enthusiasms, the great devotions; who spends himself in a worthy cause; who at the best knows in the end the triumph of high achievement, and who at the worst, if he fails, at least fails while daring greatly, so that his place shall never be with those cold and timid souls who neither know victory nor defeat.”

What I've come to realize is that I was never meant to be in the ballroom. I'm meant for the arena.  I've stumbled. My face is marred by dust, sweat and blood. I've strived valiantly. I've erred. I've come up short again and again. I've spent my time on a worthy cause, and I'm praying that someday, I will triumph and be used as God's instrument to heal my beautiful girl. You see, the ballroom isn't suited for the race designed for me. Ballrooms lack the stairs needed to strengthen my endurance. My tenacity. Tenacity produces perseverance, perseverance produces faith. Or as James 1:3 says, "because you know that the testing of your faith produces perseverance", or Romans 5:3 "Not only so, but we also glory in our sufferings because we know that suffering produces perseverance". Tenacity. Endurance. Perseverance. Which comes first? The suffering seems to be the catalyst and is defined by our individual "race" or "run". The race we can't quit. This verse has been lingering in my mind for several months, especially the "everything that hinders and the sin that so easily entangles" part.

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.

Throwing off the sin that so easily entangles. This is a word for the wise, for the wolf criers.  I'll never mislead with my cries. For me, the cries indicated the building of my faith, a sort of call for prayers for my vision....my believing.  My cries are the seeking of that smooth path to emerge. Cries to submit my voice to my voiceless daughter only to restore her voice. Maybe reimagining crying wolf in the first place. I promise, I'll never fool you.

Thank you for being patient with me over the last year or two, as I've been cowering in the corner. I do feel covered in prayer for the first time in a long time, so Olivia must be on someone's mind.  God's Timing is perfect, but those waiting in the hallway are not❤️




xo,

Kelly

p.s. I do think God has given me more wisdom about her injury. Believe with me❤️❤️




4 comments:

  1. Omg Kelly I’m crying reading just a small piece of your journey and your beautiful thoughts. You are incredible 💕

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    1. Thank you so much!❤️❤️❤️ I love having you here!❤️

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  2. I wish I knew who you are! But, I love you too😘❤️

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