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
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.
What in the world is going on? We are back. Again. Sigh,
This past Saturday was such a great day with my little dancer. One phone call later and it's a buzz kill.
Olivia has been having "rage" sessions again, a major side effect of the anti-seizure drug Keppra. We've been down this road before with this medication, and the timing seemed right since they doubled her dose during the hospitalization in December.
For those of you that have been following our journey for awhile, I've been trying to wean her off Keppra for years. Sounds weird, right? Why is it taking so long?
It seems like I almost get her there and then boom.....she's in the hospital. The first thing they do is double it, because, you know.....Keppra is wonderful for EVERYONE. MORE=BETTER.
It's always a process when you haven't found a medicine that works, and especially when that elusive "cocktail" of meds has not been concocted.
This time was intense but it seemed like she was doing way more self harm than usual. She was scratching her face, pulling at her cheeks and biting her hands......like crazy. Most of it was done in the ER before they settled her down. Something I hadn't seen before. Something was different.
First day in they started the wean, going down faster than I had ever done with her. Like, really fast. Every three days they were decreasing it by 125mg 2x/day.
The rage against herself was not going away.
A couple days later, one of my favorite nurses walked in to say hi and happened to notice how much weight she had gained.....especially in her face. As I looked Olivia's way, I realized that her face had morphed drastically. She had big cheeks.....bigger than normal. It was then that I realized that there was something wrong with her teeth.......and after a couple xrays it was confirmed. WISDOM TEETH!!
All four were on the move, and unfortunately, they have no room.
Olivia needs them out.....yesterday. This type of procedure is typically not done in a hospital, generally it's an outpatient procedure......at an oral surgeons clinic most likely.
It's been a couple days of navigating a path very few take. Doctors are not dentists and do not venture in the 3 inches or so between your chin and your nose. Some challenges have been presented and some protocols overturned.
Remember my snowball analogy I used in my last post? This hospitalization is completely different. Olivia is in A LOT of pain. Can you imagine having that much pain and not being able to communicate it? Know wonder she was thrashing at her cheeks, and biting everything in site.
Today we are trying to get ahead of the pain. We lost some ground and have been piggy backing pain meds to get it under control.
I'm grateful for the Hospitalist that has gone to bat for Olivia when hospital protocol leans toward discharge and reschedule. She literally can not handle one more day of this excruciating pain.
Please pray that a surgeon's schedule opens up, she tolerates the surgery and is on the road to recovery SOON!
After sitting down with my favorite healing book for what seems to be the millionth time, something dawned on me. Eighteen years later, and I continue to look the wrong way. The author led me down an interesting path with one tiny line of scripture:
Numbers 21:8 It shall come to pass, that everyone that is bitten when he looketh upon it, shall live.
Look here to live.
Looketh where? It shouldn't be work...right? Why is it so difficult?
What is it that I looketh upon? Scripture is clear as to how healing comes. It comes by faith, not sight. So where do I looketh? Where I always have.....at the devastation, the fall out of vaccine injury.
Honestly, sometimes I get so frustrated. I realize we are to look away from our symptoms, to turn away to what we do not see.
Ugh.......but those pesky seizures. They demand our attention. They are loud, and scary....they hold center stage, how can you not see?
She’s 19 and cannot talk. Autism 101. Unable to "not" see this symptom or so many more....
She’s weak and cannot walk very good by herself. She wears a diaper. Her immune system is shot.
Symptoms of the unwell. Symptoms of a damaged body.
How do I look away and "not see"? Isn't that a common cry of the chronically ill. These are the ones that can't look beyond their demanding symptoms.
Remember the old cliche that some people wear their hearts on their sleeves? I would say this is a description of me before the injury. My emotions (normal emotions), good and bad, there for the world to see. Like many women.
But then......I had a child and that heart suddenly relocated from both beneath the breast and from that comfy flannel sleeve. Now full of unexplainable joy, it peels itself off easily and jumps full bore into each precious little soul that suddenly became my responsibility, becoming the love of my life.....my heart.
Soon my heart starts babbling, crawling, walking and talking.
And then suddenly, one is gone.....Olivia's soul is trapped in the prison of her own injured, impaired body.
Her soul, my heart. Gone. Stolen, right from under me.
Unexplainable pain for so many Momma's out there.
I think it was around day 22 in the hospital this time around. Suddenly, things turned around. In an instant. Finally, the constant seizures were under control. The trips to the ICU.....thwarted.
This hospital stay was like all the rest. Olivia gets admitted for uncontrolled seizures resulting from an illness. In most cases, it's the same scenario. I often liken it to a snowball released at the top of a snowy hill. Illness.......weakness......stops drinking and eating.....dehydration......increased seizures....loss of control......standard of care.....ICU. IV fluid is a miracle for her, but that is where the benefit of "standard of care" stops. In most cases, the medications that are administered from this point on complicate her symptoms from the onset. She just does not respond to medications like the average person and honestly, it is maddening.
This time, the neurologist confirmed it. They use a protocol that "works the best for the most people". He used the medications that he has had success with other children. I get it. That line of thinking seems to never work for Olivia, and after 3 drugs in the same family and a trip to the ICU it was painfully obvious. They say....she's complex, she's complicated. The truth is she BECAME complex and complicated by the vaccines and their toxic ingredients. Rest assured, this will be proven.
This time I had a recollection of a medicine that helped her in 2012 and we tried it. And it worked. Suddenly, in an instant, there was peace.
My adrenaline was slowly dissipating and I snuggled in one night with Olivia to watch a movie. Moana, the Disney animated movie was one of the choices and I realized I had never seen it.
What is it with me and Disney princesses? Ha!
What’s most surprising is that I have a younger daughter, who at the time this movie was released, was the prime age to head to the theatre with. Not sure if you can guess, but something else took priority and my darling little girl watched this movie without me. So my first viewing was day 22 of a stressful hospital stay, December 2017.
For those unfamiliar with this incredible tale, Moana, the daughter of Motunui's chief, has a destiny to fulfill. The entire movie bleeds Christian symbolism. The ocean (God) chooses her for what looks like an impossible mission. Tragedy strikes her remote island and she is thrust into her calling unprepared. As she moves through her mission, she questions why she was chosen, is ridiculed by one who says the ocean was wrong to choose her, and at one point, gives up on her mission. She overcomes her shortcomings and finds her way through tremendous obstacles.
She overcomes......with the Ocean's help. Towards the end of the movie, I realized the truth of the widespread devastation to Moana's island that fueled her destiny and it surprisingly hit home.
Her mission ----- to restore the heart of Te Fiti. Ancient stories dictate that once stolen there was widespread devastation.
Te Fiti's heart......my heart. Stolen....right out from under us. Unfortunately, the similarities didn't end there . Once Te Fiti's heart was gone she became Te Ka, the damaged and angry shell of her former self.
I could identify with Te Fiti and the person she became when her heart was stolen by a self serving, greedy guy who thought he was a God. Maui thought he was doing good, but suddenly, within seconds, his actions put into motion a devastating cycle that destroyed beauty. Does that description strike a cord with anyone?
The ocean returned Te Fiti's heart. That’s where the story gets good. It was the only One that could do it. He used Moana.
I guess this would be a shout out to all the Momma"s and Daddy's who have had their hearts stolen. I’m not proud of what I became for a while.....I did resemble Te Kā in some ways. I was angry, overwhelmed and ‘fiery’ to everyone and anyone for several years. Like Te Ka, I pushed away some of the people who were there to help restore my heart......I guarded my turf. My heart was at the bottom of the ocean, barely beating......sorely missing it’s former brilliance. But then He found it, held it up and I couldn't help but crawl across that ocean floor to get it back.
The lyrics in this short clip provide healing insight to those who have lost their hearts, however that may have happened:
Oprah is raving about how ‘My Truth’ is the most powerful tool, I feel she is sadly mistaken. My truth falls flat without His Truth. My truth was full of ugly feelings, hopelessness and unforgiveness towards those who stole my heart.
It could only be returned by Him.
Oh, but looketh over here. This is where you live. Not at her symptoms but in the Hope that lies in stepping into each day that she's still here with me. There are many vaccine injured children who do not get a chance to live, for they lost their lives. She's still here for a reason.
For you who have made some bad decisions, for your children or for yourself, please remember you are not defined by them, you are MORE. In addition to God's powerful healing Word, the song "You are More" by Tenth Avenue North ministered to me many days as I worked through the horror of that fateful decision to vaccinate. One decision suddenly changed the complete trajectory of Olivia's life.
Lean into these key lyrics:
You are more than the choices that you've made,
You are more than the sum of your past mistakes,
You are more than the problems you create,
You've been remade.
For when my outward action doth demonstrate / The native act and figure of my heart / In complement extern, 'tis not long after /But I will wear my heart upon my sleeve / For jackdaws [birds] to peck at: I am not what I am. Shakespeare
It was this persistent feeling of having to "wordsmith" each and every post. An unrelenting feeling of pushing back what I really wanted....and needed to write about. As time went on it became impossible and the words stopped coming.
I mean, this is my journey....my story, so why am I fudging my way through blogging it? I think I misinterpreted who my audience is, and what they "want" to hear. A couple months ago I heard a heartbreaking interview with a young couple who had recently lost their 20-month old son. It was her question that rocked my world...... It went something like this....."Why haven't I heard stories of other children before? If I would have heard their stories, I may have questioned it and made a different choice and he would still be here."
I need to apologize to this young couple. I need to tell them I'm sorry for being a coward. I haven't been brave enough. I feel as though I've lived two lifetimes with this sobering reality. I've learned so much about Olivia's situation and am passionate to put my pen to paper, but in order to move in that direction, I need to explain an important truth.
Olivia's illness....her disability.....her uncontrolled seizures....this cruel interruption to our lives is the result of vaccine injury. I know, it's a hard reality for some to accept, but unfortunately, it is true. Vaccines destroyed my daughter's health.
It's been my family's reality for 18 years now.
Vaccines killed that couple's little boy.
I'm tired of feeling ashamed.
It's been 18 years of people not wanting to hear it. 18 years of being silenced. 18 years of being looked at like I am delusional or misinformed, or my favorite...... I'm desperate. A desperate mom looking for anything to blame.
Shame is a sneaky one. It's invisible and destructive. Carl Jung deems it the "soul eating emotion", Brene Brown says shame is the "swampland of the soul". Although some of us bring it on ourselves, the act of "shaming" is prevalent. Words or emotional body language thrown our way, leaving us with seeds of emotional baggage. Like every good seed, it's cultivated and grows.....I'm not smart enough to understand.....I'm not good enough to be worthy of someone believing it.....someone has to be the "sacrificial lamb" to keep our society safe.....just accept your daughter's "genetic" illness......science is never wrong, you are.....she's complex and there is no real reason, it's just the way she was born. These are just a few of the words spoken to me by doctors, others in the healthcare field, family, and friends. It's always someone else's job to set you straight - right?
You'd think I would have been able to overcome this feeling after 18 years, especially since I had a lot of experience with it growing up. What is it about having red hair and freckles that makes you the perfect "shaming" target? Complete strangers, classmates, and even teachers felt confident and comfortable teasing me about my freckled face and/or my unique shade of red hair. We all have heard the rhymes - "I'd rather be dead than be a redhead", "carrot top", or "Look at all those freckles, can I count them". Why not just scream, "you're different and you're ugly so go hide, go away, you're not worthy."
I have to admit, the red hair and freckle jokes did make me stronger. It gave me a perspective on cruelty and it provided me with a great life lesson......people can be idiots, don't internalize it...... thrive, don't dive, and that is what I did......I let the cruelty strengthen me. Even though at the time, I wasn't a "practicing Christian" (I believed in God but wasn't actively engaged), I can look back now and see that I became a stronger person/personality from those personal attacks.
I get it. People don't want to imagine that vaccinations have negative consequences. We don't want to think that we take our healthy child to well visits and actually allow bad things to happen. We all can agree that we just want to keep our children healthy. It's almost like an act of obedience. It's just what we do.
We want to feel confident as parents. We want to have confidence in the decisions we make for them... for their future. Some of us really don't want to learn something that may question our decisions. It makes us do crazy stuff. It's what made a college friend of mine think he needed to call me and set me straight. I'll never forget that phone call. "Kelly, there is a story in the Star Tribune that proves you are wrong. MMR did not cause Olivia's seizures or Autism. They are right, you are wrong. (Shame) I will mail you the article." Click. Shame. Hopelessness. Shame. Sinking back into a hole. Shame.
Brene Brown knows a thing or two about my shameful position. "Shame needs three things to grow exponentially in our lives: secrecy, silence, and judgment.”
That looks a lot like pride, doesn't it? Voicing the truth about how vaccines ruined my child's life brought into question his decision and therefore that needed to be defended. In reality, it comes down to a belief system, wouldn't you say? I was taught that vaccines save lives. I acquired that "belief", not from researching and learning on my own, rather by "trusting" individuals and organizations that I believed in. Period.
I believed what I was told.........vaccines are safe and effective. But the problem is, I didn't learn the whole truth. Did you know that legally vaccines are deemed "unavoidably unsafe" and that is why Reagan's administration signed into law the "National Childhood Vaccine Injury Act". This law provided vaccine manufacturers complete protection of financial liability in the event that a child was harmed or died as a result of their product. Dangerous product/no liability. No wonder the number of required vaccines administered to young children has skyrocketed since 1986.
I wish I would have known Truth. That "He made all the delicate, inner parts of my body and knit me together in my mother's womb. That I am "fearfully and wonderfully made." Psalm 139:13-14
Could it be that He made a mistake? That's the big question for any Christian. Did God mess up with His creation of our immune system? Do we need to "help it" by injecting a myriad of toxic chemicals to become or stay healthy? What gives?
2018. The year to step up and be brave. Even if you are skeptical of my claims, I hope you stick around and consider what I have learned over the last 18 years. Learn about the difficult journey of a vaccine injured child and the tragic fall out to the entire family. You can do it anonymously. It's time to get real.
I absolutely love this fellow redhead. Princess Merida from Disney's "Brave". I love this quote even more. "Some say our destiny is tied to the land, as much a part of us as we are of it. Others say fate is woven together like a cloth so that one's destiny intertwines with many others. It's the one thing we search for or fight to change. Some never find it. But there are some who are led."
Copyright on "Brave" picture - Disney
Destiny. Intertwined with others. Fight to change.
If you've seen the 'Brave" movie, you know that Princess Merida's free will put her in her dire situation, just as my free will landed Olivia where she is. We both trusted hocus pocus. We both tempted God's Will in our loved one's lives, not completely understanding the fallout and consequences.
Call to me and I will answer you. I’ll tell you marvelous and wondrous things that you could never figure out on your own.” (Jeremiah 33:3, MSG)
Pretty sure this scripture means we can be led.
Apparently, to God, I guess a warrior can look like this:
Freckles and all. Shameless.
Last Brene Brown quote. Did you know that vulnerability is the most accurate measurement of courage? That it is the birthplace of innovation, creativity, and change?
Not sure why I'm being vulnerable. I just feel led.
Don't worry, sweet friend. I'm not going to exclusively talk about vaccines, this blog is still about Olivia's healing. I needed to put her story in perspective with the truth of what landed her here.
“Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness, that most frightens us. We ask ourselves, who am I to be brilliant, gorgeous, talented, and fabulous? Actually, who are you not to be? You are a child of God. Your playing small doesn’t serve the world. There’s nothing enlightened about shrinking so that other people won’t feel insecure around you. We are all meant to shine, as children do. We are born to make manifest the glory of God that is within us. It’s not just in some of us, it’s in everyone. And as we let our own light shine, we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others.” Marianne Williamson
I realize that some of you only follow my blog sans Facebook. Wanted to catch you up on a couple FB only posts from the end of December. You can connect with those two posts here and here. In a nutshell, Olivia was hospitalized the whole month of December. Yeah......Not Good.
But now. Now it's 2018. A NEW YEAR. NEW BEGINNINGS!
If you've been reading my blog, you know I kind of get into knowing the biblical meaning for numbers. This post gets into the nitty gritty. Remember what 17 means? Overcoming. Complete Victory.
Well. We are starting year 18. Unbelievable. If you would have told me that first day, seeing her first shaking spell...... that I would still be trying to figure it out 18 years later, I would have cried even harder. Believe me, fear had the upper hand. It was the overcomer, not me. (sigh)
Year 17 gave me so much new information. New understanding. So much wisdom. So much in fact, I am in love with this verse from Isaiah 42:16
"I will lead the blind in a way that they do not know, in paths that they have not known I will guide them. I will turn the darkness before them into light, the rough places into level ground. These are the things I do, and I do not forsake them."
This can only lead to one thing ----- LIFE, which happens to be the biblical meaning of the number 18! Olivia reclaiming her stolen life.
Bring it on.
Hope to see you more this coming year. I have lots to share with you
