Recklessness?

Recklessness.

Kind of a crazy word to be bouncing around in my head lately don't you think?

Unfortunately, it's there for a reason I guess.

There are some who view my position on vaccines as reckless behavior. How on earth can I question.....and put into question what some call the most important medical discovery of modern medicine and infectious disease control history?

Believe me. Many people do not want to hear about it nor will they support it (or me) and they have zero qualms about tearing parents like me down with their actions or words.

Having a child with a vaccine injury redefines people's perception of you. Many are afraid to be associated with such a stance. Institutions constructed to supposedly help children with disabilities have and will shut any sort of vaccine injury conversation down.

Over the last 18 years I've been snuffed off by the best of them. School officials, medical professionals and even church leaders and their staff. To many, it's just not worth supporting (especially going public with) and/or agreeing with the truth of Olivia's suffering. Why? Because it is an extremely controversial subject. There is a boldness that is required to stand by someone like me. Many feel as though the risk of jeopardizing their social and/or financial position is just too high.....even if they believe me.

Although I've been pondering this label for awhile, I wasn't really sure the direction I would take it in my writing. I was torn with the message I would send by bringing up such a sensitive topic. Sensitive for all parties involved. I would emphasize that although initially I was offended when people shut me down during conversations (which was completely evident by the complete disengagement when the subject came up followed by looking over or past me while I explained what really happened to my baby girl) it doesn't anymore. Even if the eye contact doesn't reengage with some folks, taking offense is not worth the swirl of burden and spiritual consequences that cascade when someones opinions collide negatively with your own.

Olivia and I have had a long weekend together. The rest of our house went camping, hiking and boating. Unavailable staffing and Olivia's inability to participate in such a weekend kept us both home while the rest of our family enjoyed quality time and memory making. The plus side of these lonely 96 hours was a reduction in cooking and the increase in music playing.......as loud as I wanted. Eeeek!! What a bonus.

One listen to this song and I immediately knew how to write about this subject. Coincidentally, (or not coincidentally) the name of the song is "Reckless Love"!!

I agree somewhat with my critics......I may be a tad bit reckless....the main difference is that I'm not reckless, rather my love for my injured daughter is. Who better to explain this important difference better than the author of this song, Cory Asbury. Here's an excerpt from the story behind the song:

"So, when I use the phrase the "Reckless Love" of God. we are not saying that God, Himself, is Reckless. He is not crazy. We are, however, saying that the way He loves is in many regards quite so.

He is utterly unconcerned with the consequences of His actions with  regard to his own safety, comfort and well being. His love is not crafty, or slick... its not cunning or shrewd. In fact, all things considered, it is quite childlike, and might I even suggest sometimes down right ridiculous.

His love bankrupted heaven for you...for me. His love doesn't consider Himself first.  It isn't selfish or self-serving. He doesn't wonder what He will gain or lose by putting Himself on the line. He simply puts Himself out there on the off chance that you and I would look back to Him and give Him that love in return. His love leaves the 99 to find the 1 Every. Single. Time and to many practical adults that's a foolish concept.

But what if he loses the 99 in finding the 1, right?  What if? Finding that one lost sheep is and will always be supremely important. His love isn't cautious.  It's a love that sent His own Son to die a gruesome death on a cross.

There is no plan B with the love of God. He gives His heart so completely..... so preposterously that if refused we would think it to be irreparably broken. Yet, He gives himself away again and again and again and again.....time and time again. Make no mistake, our sins do pain His heart and 70 X 7 is a lot of times to get your heart broken and yet He opens up and allows us back in every single time.

His love saw you when you hated him. and all logic said they'll reject me, He said, "Naw,
I don't care what it cost me. I lay my life on the line as long as I get their hearts". Cory Asbury

Ohhhhh dear friends. No words could ever be Truer for the mother of a vaccine injured child. She is "utterly unconcerned with the consequences of her actions with regard to her own safety, comfort and well being. Her love is pure, not "crafty, slick, cunning or shrewd...it's quite innocent and childlike".  Some think she is ridiculous.....even perhaps 'Munchausen-ish".

She bankrupts her heart and pocketbook.....doing anything to bring relief and bring her child back. Her love "doesn't consider herself first. She isn't selfish or self serving. She doesn't wonder what she will gain or lose by putting herself out there". She "puts herself out there on the off chance that her precious child will look back at her and give her that love in return." Painfully priceless.

Her love "leaves the 99 to find the one every time, and to many practical adults it doesn't make sense." She may have to leave old friendships that don't allow for the support she needs to focus on her "lost" child. Some critics talk about the lost child's siblings and the "neglect" those children experience because of the mother's obsession. Really?

Oh, yes, we are warned.....your other child will develop issues, you are choosing one over the other, or my favorite...think of the other children in the family...the neglect. Does this pan out? Why is it that most children who have a seriously ill brother or sister become the most amazing people? No entitlement issues, selfless, caring individuals who actually walk out the Truth Jesus teaches first and foremost....love. They see the suffering, they feel the difference in their family...they learn and develop coping skills...unlike many of today's young adults on college campuses.

The sibling of a developmentally challenged child get to see the love of Jesus at work. They see and become the "hands and feet" of Jesus and become stronger from it.....not a victim of it. These are the kids that grow up knowing how to make intelligent, informed choices for themselves and their families. They learn that a belief system can be challenged simply through gaining knowledge and doing the research themselves. They end up choosing an informed decision. They become sheep of a different Shepard.....the true shepherd who would not sacrifice a child or two or 100 to develop unsafe vaccines that make big companies billions of dollars.

There is no plan B for the mother of a vaccine injured child. She "gives her heart so completely, so preposterously." Hers is the heart that's "irreparably broken", yet she gives herself away again and again and again. She takes on the rhetoric from her family and friends, never backing down from the truth they just don't want to hear.

The original context of this parable defines the "lost as a sinner who has lost their way . The righteous, proud individual who's sin has blinded him to God's love. I found a different definition of "lost" that fits with our current situation --

"Denoting something that has been taken away or cannot be recovered" - Merriam-Webster

Olivia has been lost. She's been taken away, and with God's leading she can be recovered. Verse 5 goes on to say:

"And when he finds it, he joyfully puts it on his shoulders and goes home. Then he calls his friends and neighbors together and says, ‘Rejoice with me; I have found my lost sheep.'"(Luke 15:5-7)

I'm finding my lost sheep. Slowly, but surely. A mother's "Reckless Love" is merely an imitation of Jesus. Isn't that what we are called to aspire to? Remember that saying....."What Would Jesus Do"? He doesn't give up. On you, me or Olivia.

Out here, in the wilderness looking for my lost sheep. These words run chills down my spine...

There's no shadow You won't light up, Mountain You won't climb up, Coming after me

There's no wall You won't kick down, Lie You won't tear down, Coming after me

Go ahead. Be reckless for someone who's lost. Reckless Love.

xo


p.s. This is a powerful video of God's "Reckless Love". As a mother to a couple young adults and a pre-teen, the video provides a visual of God's behind-the-scenes protection as our children make choices in life that seem to separate them from God. He'll leave the 99 each and every time for the 1.

Two steps forward.........one step back👣

Hey there.

Maybe I'm wrong, but I think by this time my readers know something is up when I haven't posted in a while.  We've hit a low spot in our journey...... by "we" I mean me. Olivia is slowly moving along....regaining some of what she lost in the hospital but unfortunately this time around it's been an extremely slow recovery.

So? What's up with me you might ask?

The weakness is real, and disastrously powerful.

What do I mean by that?

After making the videos of Olivia, my heart felt exponentially wounded. Reliving her vibrant personality before the injury conjured up feelings of anger, which clearly led my mind to the latest hospitalization....my weakness screamed,,,"Really Lord, we were on that new path you set us on. Why on earth was this further victimization allowed?" (sigh)

Soon after, I felt myself taking a break. Taking a break of my morning devotional as I watched my beloved "God" books collect just a wee bit of dust on the bookcase beside the makeshift bed in our office. "It's summer", my mind reasoned. "You've had the worst six months of your life", it went on and on and on. In my defense,  I was also gearing up for a 4 day "vacation" to the Dell's for my little dancer's nationals and soon I kind of fell off God's radar.

Over the last 18 years of this sucky journey, I was desperate for some peace in regard to my beautiful girl losing her voice and soul as seizures took hold and ravaged her mind and body. I thankfully found that peace in God's word. Every day was spent reading or learning scripture as I grew in my understanding of God's character. This method was my "pill" taken every morning which enabled me to move through my day and fight for the one I lost.

Upon my return from the Dells, I realized that all I had worked up to was gone. As I walked through the door, I was no longer looking through eyes of faith, what I was now seeing was the horrible, impossible and depressing condition of my beautiful girl. I looked at her as she lay on the gym mat filling our scantly furnished living room. The once faith filled eyes that looked past circumstances now focused on her inability to get herself to a seated position which is clearly a prerequisite to standing and walking. At once, I was on the mat pulling her legs down from her favored "fetal position" reminding her that she's not a baby. Emotions that I haven't felt for, well, 18 years flooded my spirit and the "refreshness" of my time away vanished in an instant.

I was desperate. Once again.

I was desperate to get that peace back.......like yesterday.

That night, while laying next to her as she began drifting off to sleep, something unexpected happened. I had just settled in reading one of my "dusty" God books when I felt her right hand feel around on the bed. All of a sudden she grabbed my left hand and clasped it tight...intertwining her fingers through mine as if she were saying....."I'm holding on to you Momma....please don't give up on me". In that instant, it dawned on me......that is what I was doing every morning when I sat down to read God's word. Figuratively, I was searching for his hand in the dark, feeling around for the grasp I had grown to know so well, all while whispering "I'm holding on to you Lord.....please don't give up on me."

Dependence on Him is the only cure to my debilitating weakness.

After this experience, I was intrigued to learn more about this stint of apathy and weakness. I was reminded of the many mindset strongholds I've developed throughout the years, including my mode of operation when it comes to the race that has been set before me. Weariness can and has overtaken me. Honestly, I thought I was past this.

Then I was reminded of 2 Corinthians 12:9, and this verse came alive in my life and in this situation:

But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me.

I now know that the trigger for my spiral has a root, and that root was an inability to really grasp her condition coming out of the hospital. Not only her regression but the intense anger I felt towards the staff at the hospital. I no longer harbor any of this anger towards them, but inadvertently turned it on myself. How could I let this happen to her? That, there was giving into my weakness and losing the power to overcome it.

Here's the key for me. God's GRACE is empowerment. I don't deserve it, it's not earned, but an unmerited gift. I turned away from his grace when I stopped reading His word. He reminded me that His power within me is greatest when I face situations that are beyond my ability to handle.

Yes, yes, yes. I know.....God is in control. I receive this message a lot from people. He is in control but for some reason He wants me to be involved in this situation. Oh, how I would love to kick back and do nothing. I've come far enough down this road to realize that for some reason He's working this thing out through me not for me.

Tenth Avenue North has the perfect song to describe this phenomenon - giving God the control knowing He wants you to be a part of His plan❤️

Here I am, All my intentions, All my obsessions
I want to lay them all down
In Your hands, Only Your love is vital
Though I'm not entitled, Still You call me Your child
God You don't need me, But somehow You want me
Oh, how You love me, Somehow that frees me
To take my hands off of my life, And the way it should go

I've had plans, Shattered and broken,
Things I have hoped in, Fall through my hands
You have plans, To redeem and restore me
You're behind and before me
Oh, help me believe (Control, Tenth Avenue North)

With this in mind, we constantly pray for you, that our God may make you worthy of his calling, and that by his power he may bring to fruition your every desire for goodness and your every deed prompted by faith. 2 Thessalonians 1:11


xo

Lovely Video

A video I've been working on.

xo


Kelly

Mending....

Thank you so much for the prayers of support and healing for Olivia while she was hospitalized and while we have been at home.

So many things have come to mind over the last eight weeks that I'd like to share. Upon discharge, I was given an incredibly dire prognosis for Olivia's life. This prognosis was detailed in the "Assumptions Can Be Deceiving" post. While in the hospital, she acquired 4 NEW serious conditions:

1. High Fevers. One doctor said "It would be a miracle if her fevers went away.
2. Extreme hypertonia. Would never walk again.
3. Her left arm was floppy and unusable. 
4. Extreme weakness. No longer able to hold her head up and she could not swallow, so, therefore, could not eat or drink.

I can say one thing......it's been a long eight weeks....but Olivia has made a lot of progress!

First of all, she has not had a fever since she's been home! One miracle down!! The extreme tightness and hypertonia are diminishing every day and she has started using her left arm again. Miracles #'s 2 and 3! The weakness is gradually subsiding. She is able to hold her head up again with returned trunk strength and is completely off the tube feeding and eating/drinking once again. Praise God!

I really wanted to share some of the pictures and video's I've collected over the last 16 weeks  - yes 16 weeks!!!! Looking back on where we've come from, I thought it would be neat to combine them with a song that God has put on my heart since arriving home.

Actually, it just occurred to me why God impressed this video on my heart and it starts with one of my favorite bible verses for Olivia. Psalm 139:13 "For you created my inmost being; you knit me together in my mother's womb," and this incredible song by Matthew West "Mended".

What I realized is that God is the one who "Knits" (Premier Knitter) us together, so, therefore, he must be the Mender. With Olivia, the temporary patches to her fragile and damaged "inmost being", supplied by drugs and other medical interventions have too often worn thin.......with their ineffectiveness and consequential damage. As with this last hospitalization, she ends up worse off. Take a look at how much the drugs ravaged her hair:

See that inch and a half section closest to her scalp. That's her real hair color. That is healthy, undamaged hair pushing out the darkened, broken and thin strands left remaining on her head. She lost so much hair since being home, you would have sworn she had been on cancer drugs. It came out in fist fulls.

If you are familiar with my writing, I often plead for a "Do Over" with Olivia's life, especially the decisions I have made for her. In a sense, I really feel like this is the beginning of that "Do Over" phase. I mean, seriously, it was like I brought home a 19 year old newborn. Her limbs were contracted in a ball, she could not use her arms for anything purposeful, she could not hold her head up and consequently lost a bunch of hair at the back of her head. As she started getting better her coo's and giggles reminded me of that gorgeous little baby I brought home 19 1/2 years ago. Especially since she now has some missing teeth. (ugh) Ok, now I'm getting weepy.

What's important is that the mending has begun and I feel like I have a better understanding of how the vaccines tore a hole in the Perfection she was given. These holes and patches can and will heal because guess what? He can push out the darkness.....the brokenness.....and strengthen the thin strands of faith we mothers of vaccine damaged children cultivate with our experiences. 

Here's to the beginning of this new chapter!❤️

We would love continued prayers for her ability to sit up/get up on her own from a laying/seated position and to be able to walk again and her overall health and vitality at this stage of her restoration.

xo

Happy Mother's Day!

Happy Mother's Day from Olivia and I❤️

I was reminded of this picture today, and my visit to the Cathedral of St. Paul while Olivia was in the hospital this winter. I stood before this.....mesmerized by the beauty.....and snapped a photo with my phone. A powerful image of THE Mother/Child.

Reproduction of Michelangelo's Pieta at Cathedral of St. Paul

For those not familiar......this is a reproduction of Michelangelo's Pieta sculpture depicting the Virgin Mary cradling her dead son's body, Christ Jesus, after He was removed from the cross on that fateful day.

So many feelings/emotions and lessons hit me with this visit. Not one mother I know can completely identify with the pain she must have endured. As I gazed at her downtrodden face, age-old truths soothed my own grieving heart, which still resided at a local hospital bed just a few miles away.

A mother loves, yes. But more importantly, a mother endures......she sacrifices......she suffers with her baby, no matter the age.......and at some point, she learns to believe in the Sovereignty of her situation......even when it stings. 

I am thinking of all mothers today, but I'm especially thinking of those kindred spirits who have had to become warriors for their children......for those who have had to cradle them while they are having seizures.....praying for them to just stop. To all those mothers who are wrestling with sick children and beating themselves up for making that common decision to vaccinate, only to end up with a child that sits in the corner stimming all day....or banging their head on the wall.....or screaming that familiar high pitched scream......or...... (insert a child's individual heartbreaking symptom). 

I'm thinking of these Momma's and their breaking hearts and I humbly point them upward to the only Hero.....Mary's Son.....the only One who can truly save them and gracefully pull from their hands the responsibility to save. Only He can.

I tried to be the hero for a day

But all my superpowers failed to save

So I turned in my ego and my cape

I was made to fly but not this way

It all starts with breathing You in

Breathing You in deeply

I've been drowning under my skin

No one but You can save me

My weakness is my honor not my shame

Leaning is my portion not my pain

I was frantic till You changed the pace

You won't give me more than I can take

You're my hero
You're the only One
Who is strong enough
You're my hero
You always pick me up
Before I self-destruct (Save Me Steffany Gretzinger)

xo

Assumptions Can Be Deceiving......Continued

My mind is still stuck on assumptions.

I wish I would have realized that assuming things without challenging the assumptions leads to a belief system based on blind trust and blind faith.

Redo please (sigh).

Well, like many I was blinded.

In my previous post, I detailed the assumptions that were made with Olivia's recent 8-week hospital stay. It really got me thinking about the assumptions that I made when Olivia was an infant.

• I assumed that vaccines were safe
• I assumed that vaccines were necessary
• I assumed that my pediatrician was an expert on vaccines
• I assumed that vaccines strengthened her immune system
• I assumed that the ingredients were minimal....like maybe an antigen and saline

I also assumed I would live the American dream. 

I researched her stroller, her car seat, breastfeeding, formula etc. etc. ........but not vaccines. 

Instead, I believed. I didn't question. Didn't give it any extra thought. My blindfold and I were happy.

A friend of mine recently sent me a sweet note telling me that he prays for me often. I love the encouragement and I love it when people reach out to me with their prayers for Olivia. What I found perplexing about his note was this statement ---  "your friends are scared to approach you because of fear."

This makes me so sad. I want to be approachable. Why are they scared? What causes the fear?

Maybe my friends are afraid because they see me entering into scary, uncharted territory. I'm talking about a very controversial subject and let's face it ---- most people have fully vaccinated children.

Maybe they are afraid for me....like embarrassed for me....you know like when you're embarrassed for the drunk friend on the dance floor.....that I'm sticking my neck out by talking about her injury. Or,  maybe they think the faith-building journey I write about......me growing and learning and trusting in the hope that God will answer my prayers and heal Olivia of this injury...... is a bunch of hogwash.

Maybe they are afraid because our belief systems are on different ends of the spectrum so any sort of conversation between us may redefine our relationship. Maybe they wholeheartedly believe in the indoctrinated "evidence-based science" and cannot venture past information that may challenge their current thinking.

I can't be sure.

What I can be sure of is that I'm done with fear...I've finally realized after 17 years that fear is a liar. Fear cheats you out of moments, out of memories. Fear has you living in the future while your present grows numb. Fear turns you into a person you don't even recognize and shames you for it the following day. Fear confuses you, controls you and sacrifices your life to the wolves roaming on the outskirts of your soul's campsite....simply because it puts the fire out. Poof.

God's has had to relight my fire several times because of fear's powerful hold over me.

Here's really what is scary:

1 in 6 US kids have learning disabilities
1 in 26 people will develop epilepsy in their lifetime - 1 in 20 children under 5 years old.
1 in 59 kids have autism

I can say, in all honesty, that I used to dream about the medical community being Olivia's hero.  But, year after year goes by and with each (necessary) hospitalization she continues to get weaker and weaker with every treatment they suggest (which basically boils down to 1 of 3 tools in their toolbox....vaccines, antibiotics, drugs). I know for some people the medical community was/is their hero and in no way am I discounting the positive life-saving forces that some people have benefited from. Emergency services are amazing and surgical advances are incredible.

Olivia's condition has been dubbed "rare". Did you know that 1 in 10 Americans (10% of the population has a rare disease)? There are over 7000 different rare conditions they assume 80% are genetic. Yes. That is what they say about Olivia. It's genetic.....even though every single genetic test has come back normal. They'll find it someday.....they assure me. They are on the case to figure out what her "underlying condition" is.🤔

Back to heroes. I've been looking for one of those.......like the Real Hero.

Remember that scene in the movie Shrek 2....and, of course, the song?

"I need a hero. I'm holding out for a hero 'til the morning light. He's gotta be sure And it's gotta be soon. And he's gotta be larger than life"

Larger than life. 

Yep. That's what I need. Only something larger than life can lift you out of a seemingly impossible situation. Believe me. Without this Hero, I see how impossible Olivia's situation looks. When I take my eyes off of Him, emotions like dread, overwhelming sadness and fear set it. Is this what my friends see?

You know what's funny is that this little scene in Shrek 2 is so spot on with Olivia's situation. The fair Fiona needed a hero to rescue her from the deceit happening right under her nose. Her hero was working behind the scenes to rescue her from something she was unaware of. Her white knight riding in on his fiery steed..when in reality, its the humble ogre in love and the fear-laden donkey, together posing......but none is as great as the True, White Knight.

Instead of assuming things when my children were babies, I wish I had known this......

Aluminum, which is used as an adjuvant in vaccines (creates an immunological response so that our immune system recognizes the antigen riding piggyback) granted a GRAS (Generally Recognized As Safe) status in 1975. So, in effect, it was/is assumed to be safe, so no studies were/are needed. I was completely unaware of the myriad of chemicals in each vaccine vial. Here is the CDC compilation of each vaccine and their ingredients. The TOXICOLOGICAL PROFILE FOR ALUMINUM (2008) shows detailed information on how aluminum affects the human body, although throughout the 300 pages of this document the words "no studies available" were abundant.


In the last several months, groundbreaking studies on the truth of Aluminum and its effects on the human body (especially the brain) have been published and the findings took my breath away.

There are so many "skin on" heroes in the vaccine injury world. J.B. Handley (co-founder of Generation Rescue) is definitely one of them. The father of a vaccine injured son, he has emerged as a voice for parents and his research and reporting of the scientific studies surrounding this realization is remarkable.

By now, you know me enough to realize that I am just a Momma looking to heal my baby girl. I'm not a scientist(although I do love reading studies that relate to Olivia's situation). Because of this (and space on my blog post), I will refer you to the more in-depth analysis of these important studies for your perusal. I view my position as sharing my journey which includes the information I have learned along the way.

Highlights of the newly published research:

J.B. Handley's excellent compilation of the new research emerging on Aluminum in Vaccines creating neuro-degenerative conditions is a must read.

Dr. Christopher Exely Keele University - 30 years experience in the study of Aluminum

Journal of Trace Elements in Medicine and Biology (3/18) Aluminium in brain tissue on Autism

Dr. Chris Shaw - University of British Columbia in Canada

Neuro Molecular Medicine Aluminum Adjuvant Induces Motor Neuron Death in Mice:

Reconsideration of the Immunotherapeutic pediatric safe dose levels of aluminum - James Lyons-Weiler

Aluminum in Vaccines: History and Toxicity details not only the history but also the amount of aluminum our children currently receive under the CDC current schedule. Hint.....not good. Total of 4925 mcg by 18-months old. Links to sources. 

"Whilst being environmentally abundant, aluminum is not essential for life. On the contrary, aluminum is a widely recognized neurotoxin that inhibits more than 200 biologically important functions and causes various adverse effects in plants, animals, and humans". Kawahara 2011 PMID 21423554

Inhibits more than 200 biologically important functions. Interference of normal neuro sequencing of brain development. Impairs many cell structures and cell functions.

Interesting. Common sense would attribute this to the increase in Idiopathic Epilepsy, which, you guessed it means "seizures of unknown origin". This seizure type makes up 1/3 of new epilepsy cases and.....you guessed it again...affects children most often. These seizure syndromes present no brain abnormalities and are believed to have a genetic root. Of course. They are looking for the genetic connection. I, for one, will not hold my breath.

Kind of reminds me of Olivia's recent hospital stay. Fevers of Unknown Origin (FUO). On discharge, they meticulously explained that even though she did not get admitted with fevers of 104/105, that now her new normal is fevers every day because her "underlying condition" has now caused her brain to create these fevers and it is permanent. One hospitalist even went as far as that if she stopped having fevers every day it would be a "miracle". Well, praise God.......she hasn't had a fever since we've been home (insert a hint of sarcasm). Never once did they attribute the fevers to drug toxicity (remember --- 7 major drugs started at once). Just. Can't. Make. This. Stuff. Up.

And just like that.....major confirmation of what I have been saying for years. I knew her before the damage. I heard her sweet little voice....her cute little giggle...her super smart abilities that included knowing her ABC's, all the animals and their sounds, and counting up to 15. Do I have a scientific study detailing that this is, in fact, is the root cause of Olivia's "underlying condition"? No. But I do have common sense. Unlike the doctors at the hospital, I will, through research like these new studies figure out the damage, how it happened and someday be able to explain it in more detail. This was the elephant in room 5020. There's a term for it. She has Iatrogenic Disorder. What is that you say? It's a specific disease or disorder caused by medical treatment --- aka her suffering is a result of the medical intervention (vaccines, antibiotics, drugs) I began with her at 12 hours old with a vaccine for a sexually transmitted disease (oh, and for IV drug users) that contained 250mcg of this said neurotoxin and many others.....ugh.

My beautiful girl was named Olivia Christine Johnson with the initials OCJ.....she does not have the initials CD for "Collateral Damage" that which is expected by a system seeking a fictional herd immunity.  Vaccine injured children and adults do not have to suffer because of an ignorant belief in herd immunity that is grossly misinterpreted. Dr. Suzanne Humphries

Could this be one of the roots to the increasing number of rare diseases we discussed earlier? Here's the answer ---- No studies available.

Oh, friends, I wish this recording of our journey was more lovely....desperation imagines beauty, it wants beauty.....doesn't it? But the truth is clear.....it isn't and I'm done being fearful or scared about revealing the truth surrounding Olivia's suffering. I invite my friends to ditch the fear and reach out to me. Remember....I'm just a Momma trying to help my girl. Anyone in my situation would fight like mad for their child....I guarantee it.

A couple months ago, I ventured over to my younger daughters dance studio to watch her practice. I immediately fell in love with the lyrical music as I sat back and watched the beautiful dance the choreographer and teammates had put together.  In an instant, I could relate the words of the "Lovely" song to so many young girls....as well as mature girls. One night as I laid down next to Olivia on the makeshift mattress now residing in our office, I could hear Lauren practicing to that particular song. While listening I glanced over to Olivia and she looked up at me with those gorgeous blue eyes. In an instant, while gazing into those mesmerizing light blue lovelies, my spirit heard a whisper from hers. The words to the song came alive with meaning, for Olivia's life. I felt as if she was telling me, "Mom, I was good before. I was good the way I was. I want to be the way I was, Mom."

"Lovely" by Sara Haze.

She was lovely. Her body, her God-given....." fearfully and wonderfully made" immune system was lovely, He wove those inward parts with complex chemical reactions that confuse the wise. I was the one who allowed the mayhem, the agitation....the long-lasting trigger that can only be initiated by a foreign chemical injected into pure divine loveliness. Me. What gave me that right? Because I blindly trusted a belief system?

I wish I would have known that my "belief" system was based on assumptions, that "evidence-based" medicine for vaccination was really just a mirage. More studies are questioning this "science" with findings that it just may be some sort of "Frankenscience" (Dr. Toni Bark). With many things in today's world you learn about the dangers, but with vaccines, the perception that anything could go wrong is downplayed and not talked about. We're kept in the dark. Their idea of informed consent is a fairy tale, just take a look at the real vaccine package inserts.  Those pesky side effects are real. As I look back on those appointments, I now know the reason why my stomach turned as I witnessed each and every injection. It was my inner man begging me to look further, understand more. Who gave them that right to do that to my child? Who gave me the right to cower? Deception is sneaky. Her life was meant to be beautiful. To be lovely.

Ripping off that blindfold has been liberating. Its removal exposes Truth and the true root of my fear and in that revealing instant, I realized it wasn't the wolves encircling my soul's campsite. Instead, with disbelief, it was actually the sheep, with their deceptively white coats that tied that blindfold painfully tight....with the fear they instilled......to scare me into their belief system. Remember the words to the "Fear is a Liar" song? Sneak back up to the beginning of this post....you will see the purple link.....listen to that truth.  Here's a reminder:

Fear, he is a liar He will take your breath Stop you in your steps
Fear, he is a liar He will rob your rest Steal your happiness
Cast your fear in the fire Cause fear he is a liar

I assume different things now. I assume that God made Olivia's body "wonderful" and powerful.... capable of restoration. I assume God has a good plan for Olivia's life. I assume I can put my trust in His will and that campfire in my soul can burn bright with His Love.....His Wisdom when I start believing in the True Hero, who isn't a poser. His White Horse carries The One. I assume that God can take our situation and bring beauty from the ashes. 18 years of ashes. I can assume good will come out of the pain and suffering. With these assumptions I am guaranteed to never feel like I'm the a*s ever again.......u can too. Ripping off the blindfold is liberating. Truth is liberating.

I have to remember that God is the True and Final Judge:

"Do you not know that you are God's temple and that God's Spirit dwells in you? If anyone destroys God's temple, God will destroy him. For God's temple is holy, and you are that temple."1 Corinthians 3:16-17


xo

Interested in removing the blindfold? There are so many resources, but so to not overwhelm you I would suggest these first:

Dissolving Illusions: Disease, Vaccines, and the Forgotten History - Dr. Suzanne Humphries, MD, Roman Bystrianyk

Injecting Aluminum Documentary

The Truth about Vaccines Documentary Series

Vaccines Revealed Documentary Series

Assumption's Can Be Deceiving

I haven't been able to share with you lately. I've been in that pit again....unable to see the light. Caught up in the darkness.....you know, where deception runs rampant.

I'm trying to decide which Bible story is similar to my last couple months. Have I been in the lion's den? The fiery furnace? In an ash-heap? In prison? Fighting Goliath? Or simply walking further out into this man-made wilderness? Which is it? It's seriously up for debate in my head and it's been making me crabby.

Just being real.

Thus the reason I haven't been writing to you. Who wants to listen to a crabby person vent (other than my mom, jk 😂)? Certainly not you, and I respect that.

That said, I have good news for you by the end of this post. I promise.

What I'd like to share is the truth about my experience with Olivia over the last couple months. One word was king......Assumptions.

We've all heard the expression, right? Don't assume.....it makes an a** out of u and me. Silly...right? Or might this just be dead on?

Most of Olivia's really bad days have begun with assumptions, and the last several months have proven this to be true.

Assumptions are all you have when your child is non-verbal and not able to communicate with you. On January 20th we assumed she was having a "rage" adverse reaction to the medication Keppra since she has experienced it before. Just ask her elementary teacher and aides....scars from her gouging their arms probably still exist. It was a sensible conclusion, but this time her rage was directed at herself. Self-harm. Gouging of her face. This post explains the details.

We assumed and we started weaning in the hospital, but the self-harm continued. A CT scan was done and it revealed that she actually had an abscess in her mouth that was hidden from our sight. We assumed  the root canal an ENT performed a couple years ago had worked. She was in pain and could not tell us, that is, we didn't think she could tell us. In reality, though, she was. She was screaming at the top of her lungs, eventually having to intensify her message because we just weren't getting it. She upped her game.......with the clawing of her face....the constant biting of her hands and the constant writhing in pain.

At the time this CT finding was a blessing, I sighed with relief. The surgery to remove the abscess (and unfortunately 2 of her front teeth) was done and I was anxious for her to recover so we could return home.

I assumed wrong.

When she returned from surgery I was met with members of the pain and palliative care and infectious disease teams, and this is where the assumptions ran wild.

Standard of care for pain. Opioids+.

I was told she would be getting the following medications:

Oxycodone
Dilaudid
Hydroxyzine
IV Tylenol
Motrin
Ativan
Unasyn for the "possible" abscess infection.

I told them. "Olivia does not do medications well! Her body does not break them down properly." "This is too much for her." "She had an abscess in that exact same spot before - she did 7 days of amoxicillin and OTC Advil ---- that's it!"

If you get me, you know I am a fierce advocate for Olivia. But, unfortunately that didn't matter. They are the experts - I am nothing. In an instant, I'm reminded of a clip from the movie "Matilda" I've shared on my blog before - "Listen you little wiseacre. I'm smart, you're dumb --- I'm big, you're little. I'm right, you're wrong, and there is nothing you can do about it."

And that there is truth. There was nothing I could do about it, and that's where things took a turn for the worst. 

High fevers, every day for a month. Liver enzymes elevated. Pancreatitis. She needed enema's and catheters to eliminate. Visits from other specialists due to other elevated blood tests. Endocrinology, Gastroenterology, Radiologists, Pharmacogenetics and towards the end, the Physical Medicine experts. 

I'd like to invite you into her hospital room  -  number 5020. This small room where I ate, slept and sat for 8 weeks..... watching my daughter slip into a world I had never seen before. In a sense, I likened it to a "lion's den" and daily I was thrown into the "fiery furnace" of despair and worry as they checked off the testing of one horrible and critical disease after another. Scans and X-rays repeated over and over. Waiting for test results became excruciating. "Goliath" visited me on a daily basis as he became more and more frustrated with normal test results as the "fire" of her daily high fever became ever so intimidating. They exhausted all the causes ---- except for one. Drug reaction. Multiple drug reactions. DRESS (Drug Reaction Eosinophils Systemic Syndrome). 

aka - poisoning.

When we checked in on January 20th she was sitting up, eating and drinking real food --- walking to the bathroom and so strong with the self-harm they had to put "No-No's" on both of her arms. They even considered putting her arms in restraints. The darkness hid the abscess, but even with the unknown infection, she did not have a fever. The fevers began after the onslaught of the medications. Can you even imagine taking all of those medications at the same time for days on end? Can you imagine losing your ability to control your bodily functions and not be able to tell anyone? Excruciating to think about. Excruciating to be a parent and to have to witness it, unable to do anything. You know why? Never once did they believe that their standard of care was responsible. They assumed that her fragile body could handle all those medications, and because of this assumption it then became her fault. It was her "underlying" condition that caused it all. It had to be because their "superior knowledge" is infallible.  Period.

This elusive "underlying" condition. What exactly is it? They tested her for everything under the sun, including every known autoimmune test....every cancer panel. Everything came back normal. The real cause became the elephant in the room. Each morning the "team" would file in, carefully slipping past that darn elephant that grew larger by the day. Towards the end of our stay, I watched them closely as they entered the room. My minds eye saw them sheepishly squeeze by the room full of truth and pridefully announce the following assumptions:

1. Olivia's fevers were/are a result of her "underlying" condition and it's a defect in her brain (even though they did not see anything on an MRI.)
2. Olivia's newly acquire hypertonia (which she did not have at admission) is a result of her "underlying" condition and it is her new normal. (To me it looked like severe Charlie Horses).
3. Olivia's inability to use her left arm (which became floppy and unusable) is a result of her "underlying" condition and it will be her new normal.
4. Olivia's inability to sit up or hold her head up is a result of her "underlying" condition and will be her new normal.
5. Olivia's extreme weakness and inability to eat and drink is a result of her "underlying" condition and will be her new normal.

And soon I began falling.....falling into that pit that I've crawled out of time and time again. The pit of wondering where God was, the pit of feeling forsaken, the pit of grasping at and clinging to mere shoestrings of faith that I've spent years building up in my heart. I was alone. All the time. Listening to these lies about my baby girl. My vision for her was fading....quickly. What about his plans for her life? Are they no longer good? Remember? I had just figured out some big pieces to her puzzle before this whole mess started. This is the absolute worst condition she has ever been in.

Finally, one morning I thought about everything that had happened and the rush of emotions crashing down on me. Daily. Isolation...confusion....condemnation.....discouragement....fearfulness. In an instant I'm reminded that these feelings....these emotions are liars. This liar was wearing me down, leaving me frazzled, stripping away my courage. From that point on I redirected my attention to God's word ferociously to remind myself what comes from Him. He stills me. Reassures me. Calms and comforts me. He enlightens me. Intimidation was not His way.

This situation was not Olivia's "underlying" condition. This team's gross assumptions about medications and the benefit/risk ratio were undeniably skewed. These doctors have an uncanny belief that drugs are only good. The more the better. Side effects? What is that? Especially the "experts". The pain expert appeared to have memory lapses when I correctly pointed out that the constant vomiting and drench sweat fits were not part of Olivia's picture, but were meticulously detailed in the side effect profile of benzo's. Her daily comments of how "wonderfully" Olivia was responding to the potent opioid's and benzo's painted a grossly unprofessional picture of an expert who clearly only saw blur after the words "side effects". The infectious disease experts were all over the board. Even with a negative culture, fevers were their specialty and while one said the course of antibiotics was enough for the "what ifs", the director of the department charged in one day like chicken little demanding a pic line with a 6 month iv antibiotic course, only to completely recant this hysteria the following day.

Finally, the insanity was made complete when the aloof Physical Medicine doctor and his lovely assistant swooped in like vultures to render their final and prideful opinion about Olivia and the poor prognosis they had for her future. No time to listen to what she was doing 8 weeks prior. Her muscles were not tight when admitted. Her arm was strong. Her back used to straighten. She was walking.
No rehabilitation. She didn't qualify. Drugs. That's what she needs.

I tell you this not to berate anyone, but to only tell the truth of what happened. Assumptions regarding powerful medications, incomplete knowledge, prideful ignorance with absolutely no wisdom.

And then they sent her home. A new version of disabled. The weakest I've ever seen her. Her "new normal" according to the Children's experts. All because of a simple, run of the mill abscess that was not systemic. The same exact procedure was performed in an ENT office a couple years ago.

She used to walk up the stairs to her bedroom. Not anymore. We have a mattress on the floor in our office. She used to walk up the stairs to take a bath. Not anymore. Sponge baths on the floor.  She used to eat with her adapted spoon. Not anymore. NG tube feeding. She used to walk to the bathroom. Not anymore. She used to sit up on her own. Not anymore. We need a Hoyer Lift.

It has been extremely trying. I've tried to recount and claim the many times she has gone backwards and recovered her lost skills.  One night while laying next to her as she drifted off to sleep I realized that it's been her that has been in the lion's den. Seizures have been her fiery furnace. She fights Goliath daily. 18 years she has lived in an ash-heap. Her entire life she has lived in a prison, which is sadly her own body. Together we've been traveling in this man-made wilderness and in that darkness I again entertained the idea that we were and are total and complete victims. Especially with this last hospital stay. It was like one last kick to the curb. That's it. I was up all night.

Wallowing in victimhood.

But then.........I got up and started moving in the new day and I heard an incredible song ---- "I am no victim" by Kristene DiMarco and I knew it was just for me.❤️

I'm reminded...... with God.....


I am no victim. I live with a vision
I’m covered by the force of Love. Covered in my Savior’s blood
I am no orphan. I’m not a poor man
The Kingdom’s now become my own
And with the King I have a home

He’s not just reviving. Not simply restoring
Greater things have yet to come

He is my Father.I do not wonder
If His plans for me are good. If He’ll come through like he should
Cuz He is provision. And enough wisdom
To usher in my brightest days. To turn my mourning into praise

I am who He says I am. He is who He says He is
I’m defined by all His promises. Shaped by every word He says

If you're like me and like live worship video's, here's her live video:

This live version is my favorite. I crank it up so loud I lose myself in the message. That's just what I do to crawl out of the pit of unbelief and darkness. Music. Loud. My mom always says "Why do you listen to it so loud?" Until this round of adversity I always assumed that I need it loud to release my sorrow. As I sit here tonight, the clear whisper I hear is that I need it loud to blast past my head.....past my thinking....past my logical determination of the dire circumstances I am living in with Olivia. I need it loud for it to bypass the "intellectual arrogance that opposes the knowledge of God. (2 Corinthian's 10:5). It's the only way for that much needed God sized Hoyer lift to lift my heart and the rest of my earthly baggage out of this deep, dark pit I find myself in when Olivia tumbles down.

I've realized that I don't have to assume God's promises for Olivia's recovery from this assault...I just need to continue to believe. Like the song says....I am who he says I am.....Olivia is who He says she is......Healed.....Abundant Life....Christ Like.....Wonderfully Made.....A New Creation.....An Overcomer......

My faith says she'll come out of this and she won't even smell like smoke. (Daniel 3:26-27)

xo

p.s. I would like to send a shout out to the amazing nurses, csa's and several doctors who were champions with Olivia during this very difficult hospital stay. I'm grateful for your love and compassion.