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.
I could go there again. You know....the place where I point out the unfairness of the last 11 months (wait the last 19 years)....but I will not.
You know why? This is the first time, since this madness all started, where I finally feel at peace.
Peace about Olivia's future.
I feel armed with REAL knowledge about her injury and a new path that has already yielded a miraculous recovery from where we started in April.
This verse from Isaiah continues to shine light in the darkness that almost took my girl:
I will lead the blind by ways they have not known, along unfamiliar paths I will guide them; I will turn the darkness into light before them and make the rough places smooth. These are the things I will do; I will not forsake them. Isaiah 42:16
I'd like to focus on the things she has overcome this year:
She has regained complete head control.
She has regained the ability to eat, including chewing and swallowing.
She has regained the ability to get herself to a sitting position from laying down.
She has regained the ability to walk, while being supported
She has started attempting to raise herself up and balance on her knees.
She has regained the ability to walk up our two story stairwell for a bath (with help of course).
All of these gains, with none of the pharmaceuticals I was told she needed when we left the hospital.
We are gaining ground, not losing.
I was thinking......this time I'd like to document some New Year Resolution Goals for Olivia's progress:
Independent walking.
Independent eating.
Self care skills.
Healthier year.
Relocating her bed back upstairs to her bedroom (with her setback, her bed is in our office).
Testing of communication devices.
ABA type therapy.
Getting her out in the community more.
These goals may appear as no-brainers for the average person, but for Olivia they are monumental.
I have my own resolutions...
To have more courage with sharing her story. BE BRAVE
To trust, that for some crazy reason I was chosen for this . BE CONFIDENT
To engrave on my heart what I have gained from my relationship with Jesus. BE LOVED
A couple nuggets of truth I've learned through this hardship:
Olivia and I are protected by His Love & Faithfulness ( Psalms 40:11 )
He arms me with strength, makes me surefooted as a deer. Prepares me for battle, with His shield. His right hand supports me and provides a path for my feet to keep from slipping. ( Psalms 18:32-36 )
I could seriously go on and on. Truth soothes those nerves of dread each and every time.
As we enter 2019 with high hopes and expectations of new possibilities for Olivia's life, I need to remember that even though I can be such a wienie when it comes to her suffering, I apparently am the one He chose for this particular journey. When I'm at the height of my "wienieness", I love to crank the volume high on Lauren Daigle's new song --- "You Say"
Here's a sampling of the lyrics:
I keep fighting voices in my mind that say I’m not enough,
Every single lie that tells me I will never measure up
Am I more than just the sum of every high and every low?
Remind me once again just who I am, because I need to know
You say I am loved when I can’t feel a thing
You say I am strong when I think I am weak
You say I am held when I am falling short
When I don’t belong, oh You say that I am Yours
And I believe, oh I believe
What You say of me
I believe
The only thing that matters now is everything You think of me
In You I find my worth, in You I find my identity,
Taking all I have and now I'm laying it at Your feet
You have every failure God, and You'll have every victory,
You say I am loved when I can’t feel a thing
You say I am strong when I think I am weak
You say I am held when I am falling short
When I don’t belong, oh You say that I am Yours
And I believe, oh I believe
What You say of me
I believe
Oh I believe, yes I believe
What You say of me
Oh I believe
Take a listen:
Happy New Year Dear Friends ----- I'm looking forward to more Overcoming in 2019!!
A couple notes about the attached video....Puppy kisses are fun for everyone, but more importantly look how stable she has become since the last time I’ve updated you!
It’s hard to believe that at this time last year we were celebrating (🤔) Christmas in the hospital and the following months in-patient robbed the little bit of independence she had before being admitted. (Sigh)
But today is different.....we are in restoration mode, even if it is slow. I’m incredibly thankful for the amazing strides she has made in the last 8 months. Remember.....the prognosis was that her new normal was devastating - no head control, inability to sit independently and walking again would be impossible.
Thank God the experts were wrong.
I love that The True Expert focuses on other things.....healing, restoration, resurrection and rebirth. Making all things new. Believing and receiving.
Thank you for your prayers for my warrior. They mean so much♥️
Olivia and I want to wish everyone a Happy Thanksgiving! We are so appreciative of the wonderful thoughts and prayers sent our way over the last several years. Olivia continues her fight to regain all that has been lost. I'm in awe of her strength and am eternally grateful for this second chance and the new path we are on.
So much to update you on! Her progress......what she's regained!
Are you a Gomer? Have you heard about Gomer? No, not Gomer Pyle!😂
I'm referring to the Hosea+Gomer bible story? It's been called one of the greatest love stories of all time. Somewhat simple to define, much more complex to understand the context. It's a symbolic message of a not so perfect marriage between God's prophet Hosea, and his unfaithful wife Gomer.
Their marriage is a symbolic representation of God’s relationship with Israel.
Are you wondering what this has to do with Olivia?
Unfortunately, it has everything to do with why Olivia's life was destroyed. Literally. It's Truth will describe how she can get her life back. Hopefully.
Although I've been familiar with this bible story for some time, I've never taken the time to dive deeper into it's meaning until now. Fortunately for me, it happens to be the study I started this fall -- Hosea: Unfailing Love Changes Everything by Jennifer Rothschild.
Have you ever heard the Bible referred to as the Living Word? I've heard that expression for years and even though this study is hard for some to swallow, I feel as if God has been speaking through it to answer some of the unanswered (unanswerable?) questions I've dealt with (on and off) for the last 18 years.
Like.....why my kid? Or....where are You God, cuz this hurts (and stinks, and sucks and is excruciatingly painful). Or, how about this one......where's Your plan for good here? Or..... is healing for the faithful or the lucky? Or, how about that constant wondering if You see me? Do You see her? Do You see the suffering?
Just those little questions.
I always likened myself as more of a Gilmore Girl......not a Gomer Girl. For all of you who know and love Lorelei Gilmore, you know, and probably can relate, to her flawed coping mechanisms on display throughout the series. You know....that damn independence...or is it self dependence? The mistake she made at 16 and the consequences she endured (even though the worst of the consequences were sadly inflicted by herself). Remember how she ran away? How she isolated herself (and her beautiful mistake -- Rory). She hid to conceal and protect her heart from the criticism. She went into control mode. She hid from her perceived failure. Her mistake defined her whole life. She became proud. Those darn MISTAKES!!! Sound familiar?
Now, that's relatable.
Gomer, on the other hand, not so much. She's a prostitute. An adulterer. She's portrayed as a willful participant in her unfaithfulness, but is she? Is she willful or is she blinded? Her history mentions the sins of her father.....whose fame seems to be his promiscuous nature... like father, like daughter. Her history is telling for all of us. We inherit more than our genes from our parents. We inherit habits, both good and bad. We inherit behaviors, thinking patterns and wellness habits. Most of all, we inherit "learned" belief systems, whether they are true or not.
There is so much depth in the book of Hosea. Entire sermon series and bible studies dive deep into the riches of truth and wisdom contained within these pages. I will only be focusing on what I believe is the lesson for me at this point in my journey with Olivia. God speaks to each of us individually, and what I get out of these scriptures may be drastically different then what you may see. For me, the role of scripture is to learn about God's character and to apply the obvious life lessons that are so richly taught in this accurately named.....Living Word.
Within the book of Hosea, we see God's anger as His people turn away from Him to worship other gods and idols. Their unfaithfulness to Him. It's a book about people wandering. Wandering away, not towards their God in Heaven. Step within, and soon you'll learn more details of the consequences to blind faith and inherited beliefs. They will hit your blindfold smack dab in the middle.
We are introduced to phony religious leaders and learn the dangers of a "copy cat" religious system set up by man. It details how these men seek to replace Him. Worshipping golden calves as a core belief system in their newly formed "Northern Kingdom" wasn't too smart, but it "appeared" smart because for years and years their economy was incredibly successful. Lots and lots of money, however, most of their citizens were morally and spiritually bankrupt. Oh, yes.....they still believed in God, they just went to the other ones first. He wasn't their one and only.
This is the Hosea scripture that stopped me in my tracks:
You stumble day and night, and the prophets stumble with you. So I will destroy your mother—my people are destroyed from lack of knowledge. “Because you have rejected knowledge, I also reject you as my priests; because you have ignored the law of your God, I also will ignore your children. Hosea 4:5-6.
Kind of rough wouldn't you say? God's anger at Israel is obvious. Why do I feel as though this is a major clue to the destruction in my life? Is this type of anger towards me in some way? I, too, have stumbled day and night as I've searched for the wisdom to heal my baby girl. The "prophets" of our age, aka the doctors, have stumbled as well. I'm destroyed, my daughter is destroyed by this ever-increasing "lack of knowledge". Is He ignoring my beautiful girl?
It got me thinking....what about my wanderings? What about my early belief system? Who did I, or do I idolize?
I think I represent many people from my generation. I had a "learned belief system" in respect to having children. My believe system, i.e., the first people I consulted on anything with my health, my children's health etc. was the medical community. Sure, I believed in God, but, I was taught they are the experts, and that is what I followed. I trusted them. I believed every word they said. I didn't even flinch when it came to giving my newborns those "life saving" vaccines, including injections that were given within 12 hours of life. Why would I? They were golden in my eyes.
Isn't this truth? Aren't they the golden calves of our age? It's just what the average American family did. No questions....just believe. We all IDOLIZED them. No questions asked.
Cambridge Dictionary defines idol as: a person who is loved, admired, or respected a lot.
Biblical definitions are a bit more serious:
"Idolatry literally means the worship of an "idol", also known as a cult image, in the form of a physical image, such as a statue or icon. In Abrahamic religions, namely Christianity, Islam and Judaism, idolatry connotes the worship of something or someone other than God as if it were God." Wikepedia
It's my history, just like Gomer had her history. I was raised with parents that witnessed the "miracle" of the polio vaccine. They passed down the stories of the people in their community who lost their lives to polio. Even more so, were the stories of all that were SAVED by the selfless medical community. The legends were real to them, and within one or two generations, a learned belief system was solidified with a symbolic golden sheen.
Over the years the urban legends have morphed and we are at an age where more and more people put this institution, and their experts, first. To many, their opinions mean more then what God has to say on the subject matter. Who even asks Him?
I remember watching a documentary on Amish communities. The leader of one of the communities was asked why they do not vaccinate and his reply was simple: "They do not want to interfere with the Will of God."
And there it is. A major reason why my daughter suffers so......I interfered with the Will of God and made choices for my baby based on my complete trust in an entity other than Him. I idolized the ignorant golden calf and there are consequences. Why did I, like Israel go after false Gods....like Gomer went to other lovers? One answer ---- learned, inherited belief system.
I remember I would go to church for prayer for Olivia, one of the first things the church official would ask me is.....Have I made an idol out of Olivia and Olivia's healing? Now, as I think back to this specific question, I kind of laugh. Of course...the fact that she hadn't been healed was somehow my fault...it had to be. The fact that I idolized the medical community was ok - even appropriate in their eyes. They even prayed for the doctors to heal her, not God Himself. Does God use doctors to heal people? Absolutely! Is it the only way? Absolutely not!
Another piece of advice given to me by all sorts or experts.....doctors, pastors, school officials...that I had to stop trying to "control" my situation. In the eyes of the spiritual experts, I wouldn't give the control up to God. In the eyes of the doctors, I had to ditch the control and just except her for what they said was her fault.....a genetic imperfection (that they could never figure out). Now, with the wisdom I've been so richly given, this really makes me laugh. You know why? Because of what they don't want to believe. I realize now, that I lost and transferred control of Olivia's life the minute I handed my beautiful baby girl to my pediatrician for her first vaccines. What I had left was feeling out of control and dependent on man, not God. And for what? Because I believed in an urban legend? Complete destruction of her life....all because of my ignorant learned belief system. I was so confident. I was so prideful.
Pride. Don't you love it? It's epidemic. Some of today's "experts" in all sorts of fields lack reverence. Only the prideful can pose as experts, especially when they have never even looked into the history and the truth of an invasive procedure like vaccines. Many just believe the past "experts", never thinking to investigate on their own. How would you feel if you found out that you've been Hoodwinked when it comes to the true polio history? What if it were really propaganda, or better yet merely an urban legend? (Resources at the bottom of this post if interested).
"Mistakes were made.....but not be me" is the 21st century mantra.
"Cognitive dissonance, the mental conflict that occurs when beliefs or assumptions are contradicted by new information. The unease or tension that the conflict arouses in people is relieved by one of several defensive maneuvers: they reject, explain away, or avoid the new information; persuade themselves that no conflict really exists; reconcile the differences; or resort to any other defensive means of preserving stability or order in their conceptions of the world and of themselves. The concept was developed in the 1950s by American psychologist Leon Festinger and became a major point of discussion and research." Encyclopedia Brittanica
The authors give a synopsis here:
"When we make mistakes, cling to outdated attitudes, or mistreat other people, we must calm the cognitive dissonance that jars our feelings of self-worth. And so, unconsciously, we create fictions that absolve us of responsibility, restoring our belief that we are smart, moral, and right—a belief that often keeps us on a course that is dumb, immoral, and wrong. Backed by years of research, Mistakes Were Made (But Not by Me) offers a fascinating explanation of self-justification—how it works, the damage it can cause, and how we can overcome it."
We humans are wired to cognitively justify our actions and choices. At the same time we blindly, almost willfully, spitefully, making horrible and ever-worsening decisions. As a result, we devote an enormous amount of energy to creating and maintaining false constructs designed to preserve a sense of individual exceptionalism.
Are we being intellectually honest with vaccines?
Mistakes were made.
By me.
By the golden calves I worshipped.
The buck has to stop with me. Pride separates me from the One who could figure Olivia's mess out. Remember my post "Assumptions Can Be Deceiving....... Continued"? In it, I posted the results of a recent study on Aluminum - specifically:
"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
It inhibits more than 200 biologically important functions! Obviously, even the alternative community has not discovered how her system was screwed up - literally. God is it. Only God can do the fixing and the rescuing.
Is this God's plan? For each and every one of his children to someday be dependent on a medication to control a once intact biological God-given system? A medication made from a company that makes billions of dollars? God promises us freedom in Him. Where's the freedom in that?
Olivia deserved better.
God's giving me a second chance at helping Olivia, as Hosea gave Gomer a second chance. Like Gomer, I will no longer be the "spiritual prostitute" I was during the first time around. I'm forgiven. I'm loved by the Author of the Greatest Love Story in the bible.
The golden calf never delivered for me, or for Olivia. Their ignorance in what was originally God's creation has just made things worse.
This scripture is precious. Going back to Olivia's "Valley of Achor", where this trouble began. Knowing what happened to her body and fixing it will bring us to the door of hope. Surprisingly, over the last 18 years that damage has never been completely addressed. With 18 years of conventional doctor visits under our belt, Olivia is at her all time worst. The last hospitalization almost killed her.
Olivia, sweetie, I'm sorry I was such a Gomer.
God can rescue you.
I still believe He has a plan for her life and I am done interfering with His Will. Lauren Daigle describes this beautifully in her recent song - Rescue.
You are not hidden
There's never been a moment
You were forgotten
You are not hopeless
Though you have been broken
Your innocence stolen
I hear you whisper underneath your breath
I hear your SOS, your SOS
I will send out an army to find you
In the middle of the darkest night
It's true, I will rescue you
Forget the former things; do not dwell on the past. See, I am doing a new thing! Now it springs up; do you not perceive it? I am making a way in the wilderness and streams in the wasteland. Isaiah 43:18-19
We all say it as our kids get older.....How can it be? 20 years have gone by for my baby girl and my heart feels heavy.
Oh, friends. I want to be positive. I want to use fluffy unicorn words to portray a fake, picture perfect response to such a monumental day. Can I just be real? Can I just be honest?
If nothing else, this....this being real......showing my human weakness is a big part of this faith journey I've been on. In many respects, it parallels Olivia's current physical recovery efforts.
What the heck am I talking about?
I was just discussing this concept with a friend the other day. The concept is simple and hard in the same breath......as we recover....as we heal we have good days....but then we have bad days. As time goes on, soon our good days are equal to those bad days. Then, all of a sudden, there are more good days and the bad days aren't quite as bad as they were.
You get the picture.
Olivia and I are two peas in a pod. Those good days are multiplying, but the bad can overtake us in a moment.... sometimes for more than a moment.....kind of like the fierce storm that swept through our area in the last 24 hrs. Clouds moving in swiftly, lightning that appears to be coming through your windows and of course the gigantic "BOOM" of the delayed thunder as it wakes every living creature in the middle of the night. While laying in bed thinking, (let's be real....OVERthinking) the firey storm reminded me of one of my "go to" songs from a long time ago....."Praise You in The Storm " by Casting Crowns. Those heavenly lyrics...they kept me going when my bad days outnumbered the good. Here's a sampling:
I was sure by now, God you would have reached down
And wiped our tears away,
Stepped in and saved the day.
But once again, I say amen
That it's still raining
As the thunder rolls
I barely hear your whisper through the rain
"I'm with you"
And as your mercy falls
I raise my hands and praise
The God who gives and takes away.
Here's the good new about my journey thus far.....
As I think back, my bad days only turned good as I grabbed hold of God's word. In actuality, my "bad" days back then were really bad even though Olivia's health was better (she was eating by herself, walking and did not need a wheelchair). I hope I'm articulating this correctly. So, even though this "storm" in my life has intensified to a present day tsunami level, my bad days are a fraction of what they used to be and I give all that praise to the One who has led my heart down a path of redemption and freedom.
Redemption. One Oxford definition says that is is "the act of being saved by error".
Redemption and Freedom. Yes, freedom from the guilt and shame of my error.......blindly trusting a "belief" system, freedom from my self condemnation for such blatant ignorance of the choices I was making for my beautiful girl. My beautiful young lady.
That's how Good He is.
Here's what's crazy........my annual "what does God's word say about numbers bit".....she's 20 now. Biblically speaking the meaning of 20 symbolizes redemption, and/or a complete or perfect waiting period.
Can't make this stuff up.
Olivia can be redeemed. Her life can be saved from that error. Remember, I told you we are on a new path? So far...... so good. Like anything, we still have those bad days.....but the bad aren't as bad as they used to be. More on this later.
Happy Birthday Baby Girl. Here's to a new decade.....to restored Hope in the One who Redeems us from the wreckage.....who Restores us with True Wisdom and Truth. The One who has set us on a new path void of fear, ignorance and intimidation.
I feel I've reaped the benefit from "Praising Him In The Storm". On to a new skill.......Learning how to tell my heart to beat again. Teaching Olivia to allow hers to do the same.
"Tell Your Heart To Beat Again" Danny Gokey
"You're shattered - Like you've never been before
The life you knew - In a thousand pieces on the floor
And words fall short in times like these - When this world drives you to your knees
You think you're never gonna get back - To the you that used to be
Tell your heart to beat again - Close your eyes and breathe it in
Let the shadows fall away - Step into the light of grace Yesterday's a closing door - You don't live there anymore Say goodbye to where you've been - And tell your heart to beat again Beginning --- Just let that word wash over you
It's alright now ----Love's healing hands have pulled you through
So get back up, take step one --- Leave the darkness, feel the sun 'Cause your story's far from over --- And your journey's just begun
xo
Thank you for all the powerful prayers for her recovery this summer - we felt your love. Even if we have a long way to go, I'm incredibly thankful for every "mini" step forward.
She definitely looks irritated here because I missed getting a picture this morning and tried to get one after school but the rain started pouring down!
It's been a busy summer! Rehabbing and rebuilding my girl.
Although rehabbing Olivia's weak post-hospital body should be a priority, the "experts" see it differently. Olivia was discharged prematurely from the in-home physical therapy....... just... "because". New guidelines and stricter ideals from higher up's deemed her ability to recover in their timeline impossible (especially with that ever so important diagnosis)....so, therefore, she was done in May.
You all know me be now.....you know I'm not the type to give up easily. I contacted outpatient facilities in hope to get her additional therapy.....even just one day a week.....I was successful, at the end of September.
Frustrating.
This, my friends, is the life of a handicapped individual, and their caregivers. Experts give up, but we believers don't. We are pushed outside ourselves.... beyond ourselves as we learn and research and become just about what these experts are......without the initials behind our names (I, unfortunately, do not have money for that). We teach ourselves. We read the science. We adapt and learn about nutrition, biology and chemistry in relation to the human body, especially a damaged one. We dive into therapies, both physical and developmental. We become an expert.....THE expert on our child....doctorate level expertise that sadly carries no weight or worth. More on worthlessness later.
This summer I became Olivia's physical therapist and it was quite the job! When the in-home therapy folks left, I was still relying on the Hoyer lift to get her up from any position. She hardly had the strength to lift her head, let alone balance herself in a sitting position or walk. Her left arm had just become a tad bit functional again (her left arm was injured in the hospital.....she was unable to move it. It literally hung to her side.)
It was overwhelming. Tasks took double the time to complete. It was exhausting to move her, dress her, feed her and clean her. She always looked at me so sad.....like she was thinking..."It's not worth it Momma. I'm not worth it." Those looks were always so heartbreaking for me. I know she's in there. I know she understands, she just can't tell me. Her body was so exhausted. Void of energy. Each and every day, I whispered these 3 words....."You're worth it"......"please believe that you're worth it."
Last week a friend detailed an encounter she had with her specialist doctor. She experienced some side effects from a new medication that became debilitating and contacted the physician with concern. Her physician confirmed that it wasn't a side effect of the medication and that it was just a coincidence. It clearly wasn't a coincidence for my friend. She stopped the medication and the side effect went away, but even this did not convince the physician. My friend's opinion about her own observations of something negatively affecting her body was "worthless" to this expert.
Ugh - this bugs me. All I could do was think of my poor girl and how the many medications have been prescribed and doubled with terrible side effects that almost took her life, and the experts didn't even bat an eye. Her misery did not matter....especially because she could not tell them how bad her body hurt. How worthless do you think Olivia has felt throughout the years? No voice=No opinion. No opinion= No boundaries. No personal boundaries= worthlessness.
And that's where I come in. I'm her voice. I give her an opinion. I give her boundaries. She becomes worthy......of life. Of personal safety. Of respect and most importantly......dignity.
Just tonight while writing about Olivia's rehabbing, a different word kept popping into my head. Rahab. I remembered reading about Rahab briefly when I did a Joshua study but was intrigued to look into her story a bit more. No coincidences here.
Rahab was a prostitute who lived in Jericho, the first major city the Israelites would meet as they crossed over into the promise land. Her "calling"? To hide two Israelite spies who took refuge in her brothel as they stalked the city for intel information for Joshua. She heard the stories of their God. She knew what she was doing was dangerous, but she took the risk because she sensed that the God they trusted was worth trusting. She was worthless to her community, and let's just reach a bit to conclude that she felt a bit of worthlessness deep down with the choice of her profession. Because of her faith, she was willing to help others despite what could have been a great cost to herself.
Here's my point. God works through people like Rahab. Imperfect, rejected & worthless. Rahab rose above her life situation by trusting God and pulling through on an important assignment specifically assigned to her. Believing in His protection instead of groveling in selfishness and disbelief.
By faith Rahab the prostitute did not perish with those who were disobedient, because she had given a friendly welcome to the spies. Hebrews 11:31 ESV
Rehab.......Rahab. Rising above the naysayers. Rising above the experts and trusting the true Expert with each "assignment" tossed our way. Rahab's life was changed from this experience. I've been changed.....Olivia's is changing, even if it's slow.
It's the end of the summer and Olivia has made some great strides. She is eating better. She is sitting up on her own. She has started walking with support. Last Friday, our rented Hoyer lift was picked up and taken away. Each and every day I see that worthless label melt away......the sad face doesn't dominate her day as it once did. Her cute little smile and giggle have replaced the sadness. I think she's going to be ok.
Here's a video summarizing our summer.....this post.....with a message for all of us.
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.
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
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:
High Fevers. One doctor said "It would be a miracle if her fevers went away.
Extreme hypertonia. Would never walk again.
Her left arm was floppy and unusable.
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.
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)
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.
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 assumedto 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.
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:
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 assumedshe 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.
Weassumed 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:
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:
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.)
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).
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.
Olivia's inability to sit up or hold her head up is a result of her "underlying" condition and will be her new normal.
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.
