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, January 7, 2018

No more shame......

I had a hard time writing in 2017...

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


xo


2 comments:

  1. Dear Kelly...Thank you for this absolutely beautiful and truly powerful post. The story you mention of the little 20 month old, has touched so many of us. His mother's words, "I just wish that somebody had told me...not one person ever came through..." and the many other mothers that I have heard say, "I wish someone had told me" or "I wish I had known" motivate me each and every day to do all that I can to educate, advocate and pray for vaccine truth and choice. Many people truly do not know and others simply choose not to believe that vaccines can and do cause serious injury and death. Thank you so much for working through your own personal struggles and finding the courage to put your thoughts and deeply personal feelings into words to be shared with all of us who have come to know and love you and Olivia and to the countless others who your and Olivia's story will help to protect. With your permission, I will share your post on the Vaccine Choice Prayer Community website. Know that you and Olivia and all your family are in my thoughts and prayers. Thank you again. God bless and take care...Love, Jeanette

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