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've made a decision! This year, I'm making DECLARATIONS instead of flimsy resolutions that fizzle out by February.
It's settled. I've decided to finally Go Big - or Go Home.
My younger daughter hung this poster on her bedroom door recently. My mind's eye did a bit of editing:
I pulled out my favorite devotional - Sarah Young's "Jesus Calling" and reread the devotion for January 1st. It goes something like this:
"COME TO ME with a teachable spirit, eager to be changed. A close walk with Me is a life of continual newness. Do not cling to old ways as you step into a new year. Instead, seek My Face with an open mind, knowing that your journey with Me involves being transformed by the renewing of your mind. As you focus your thoughts on Me, be aware that I am fully attentive to you. I see you with a steady eye, because My attention span is infinite I know and understand you completely; My thought embrace you in everlasting love. I also know the plans I have for you: plans to prosper you and not to harm you, plans to give you hope and a future (Jeremiah 29:11). Give yourself fully to this adventure of increasing attentiveness to My Presence. So good. Unfortunately, last year I skipped reading this. In fact, I couldn't even find this book amongst the chaos of my life. I was in REHAB mode....reading, studying, consulting and devouring any therapeutic reading material I could to recover Olivia from the abyss she had slipped into during her 2018 hospital stay. I focused, and became obsessed with the TERRIBLE and HOPELESS prognosis given to my girl. I wasn't teachable. The only changing I was interested in was to go back and change that fateful hospital stay. My mind was fixed, I lost Him. He knew and saw my flaws. He understands my deep hatred of myself - how I allowed this to happen to my girl. His Presence was drowned out by my completely distracted mind. Highlights of the Physical Medicine Doctor's Progress Notes 3/20/18
Physical Therapy - "There has been little functional progress noted."
Occupational Therapy - "There has been little functional progress noted."
Speech/Language Pathology - "No interventions in 2 weeks due to limited goals and potential for functional independence 😭
Neuro: "The patient has spastic quadriplegia from a diagnosis of seizures and brain dysfunction. The mother feels that she had a typical child until that child receive the MMR vaccine. In addition, the mother does not feel that her daughter has Lennox-Gastaut Syndrome. This is notable as said disease is chronic and progressive, so that affects how reasonable it is to expect this child to get back to a functional baseline." "This patient is currently Max-Total Assist for mobility, is non-verbal, has poor expressive/receptive language and requires total assist for ADL's" See for yourself👇🏻
But....these words, total devastation:
"The mother has stated goals that include her daughter returning to being able to walk, do ADL's (Activities of Daily Living) and feed herself, but this DOES NOT APPEAR TO BE FUNCTIONALLY POSSIBLE OR REASONABLE."
Initiate obsession of 2018/2019. The slowest/fastest years of this journey.
I am so thankful God blessed my efforts. This physical medicine doctor was wrong.
Skills/abilities Olivia regained despite his prognosis:
Complete and normal head control.
Restored ability to sit unassisted.
Restored ability to walk (assisted).
No tube feeding. Restored ability to eat orally.
Olivia is already a miracle! How is it possible that I was able to restore her functioning when the experts said it was impossible? For Olivia, the experts are not experts of her.
2020 is Olivia's year!
January 1, I will be a teachable spirit, eager to be changed. Walking close with Him for a life of continual newness. I kiss my old ways goodbye as I step into this new year. I will seek His face with an open mind, knowing that my journey involves being transformed by the renewing of my mind. I will focus my thoughts on Him, loving that He is fully attentive to me. He knows His plans for my girl. Plans to prosper her, not to harm her. Plans to give us hope, and Olivia a future. Attentiveness to His presence - no distractions.
I'd like to share with you a couple of the declarations I have written for my beautiful girl. Thank you for your prayers for her recovery. I'm looking forward to a new level of restoration in 2020.
I was back in the early days of our family life and we were at home, in our first house and all of a sudden Olivia was just gone. Like, physically gone from her bedroom.
I was in a panic. Running around the neighborhood, knocking door to door, calling the police, calling my friends and family, reeling with an indescribable feeling of dread.
It didn't matter though.
I was alone.
No one was alarmed. Their day was just like any other, mine, literally destroyed.
This dream brought it all back. I relived it.
I heard those comments again.
"No, the vaccines didn't do this. It's her. It's genetic." (Pediatrician)
"What did you do? This is your fault." (Pediatrician)
"No, there is nothing wrong with her bowels. She must just think she has to go #2 20 times a day." (Gastroenterologist )
"Well, if anything, the vaccines just "unmasked" an "underlying genetic condition" that's all, vaccines are safe and effective." (Neurologist)
"No way! That only happens to one in a million children, not Olivia. Vaccines saved the world. I'm sorry but you are wrong." (500 different versions like this - Multiple Friends and family members)
"Her genetic tests are all clear, but she clearly has a genetic problem - we just haven't discovered it yet. We will figure it out some day, I'm sure of it." (Geneticist)
"God gave inspiration to man for vaccines. Vaccines are resources and instruments from God. They save lives and Olivia's life was affected for the greater good. (Multiple Pastors and Church Officials)
Drifting in and out of this dream was bittersweet. Seeing and re-experiencing her beautiful soul before it disappeared was magical. My subconscious remembered her sweetness and her intelligence in a way that could only come from Above. A dream like state that only He could recreate.
But then she was gone, and that feeling of her being ripped away was back and it hurt more then ever.
And those comments. The way I was treated in the early days. Devastating.
No one believed me, and soon I didn't believe in myself. What a natural progression.
Are we born unbelievers, or are we just subject to an unbelieving world? Have you ever thought about that? The last couple months I've been thinking about the anatomy, or the "internal workings", of unbelief?
I wonder if you've ever been there? Trying so hard to believe for something when no one else would.
When Olivia was first injured and her health began declining rapidly, no one believed that she was vaccine injured. Friends and family were the first to hear the news and they were as supportive as they could be, but my news cut against everything they had known, everything they had been told, and to many of them it was just unbelievable.
As Olivia's condition worsened after several medical interventions, my belief of the cause of her rapid decline became even clearer. Now I was repeating my "theory" with professionals - doctors, nurses, and therapists of every kind and it soon turned ugly. I was mocked. I was threatened. I was talked about behind closed doors.
I know what you are thinking......why am I slipping into the past? I've asked myself the question over the last couple days as I began writing this post. My only explanation is that a comment triggered me, and like many that suffer from PTSD, that trigger kicked me back to that curb I thought I finally left behind.
Here's what people don't understand about life with a vaccine injured child....people don't want to hear it, and if they do hear it, they immediately look at the parent differently. Immediately.
Most do not SAY it, but their body language does, and it communicates loud and clear.
And that was, in my opinion, the beginning of unbelief, plain and simple. Rejection. Compartmentalization. Avoidance.
Each and every person, each and every comment took a little piece of me. Soon, those missing pieces left a hole. A gaping hole in my heart, a hole in my story - like "oh my gosh ---- did this really happen to my girl?", but most importantly it left me with a clear case of unbelief.....in myself.
That's why I did it.
That's why I ran screaming and thrashing towards God, because I was thrashing myself enough. My relationships were suffering....they couldn't help me. I mean, who the heck knows what they would do when their perfect toddler, who was talking and potty trained, all of a sudden STOPS DOING IT ALL. Believe me, you don't know what you would do until it happens to you.
My experience seems to always end up in a beautifully written song. A couple years ago, when I heard Steffany Gretzinger's song "Pieces", I found rescue and restoration in her lyrics.
God has proven to be "Unreserved, unrestrained, His love is wild for me. It isn't shy, It's unashamed His love is proud to be seen with me".
Seriously, I needed that.
Our story wasn't worthy enough for the people in my life to even question the idea of vaccination, let alone research the truth and benefit from the education. Why the heck did I need that validation? I mean, my amazing college friends threw together a benefit that raised a large sum of money. I was and will forever be thankful for that amazing night and their support❤️
Let me be clear.....95% of the people in our lives were and have been very kind, and I know they felt extremely bad for us. This post is not about people being mean........it's about people not believing. There is a difference.
It's a lonely road emotionally when the most defining moment of your life makes you an embarrassment for friends and loved ones to even associate with you. For some, it was that defining.
Some friends and family are now dealing with their adult children with serious mental health, neurological and/or autoimmune issues. Its so sad. But it's a reality for many, chronic illness now affects 54% of children and young adults If the experts were right about the safety of vaccines, shouldn't our children be getting healthier?
Just asking.
If you've been following our sorted tale, I'm sure you have read my references to the Bible story about Jesus healing the epileptic boy. Here's that story to refresh your memory.
"When they came to the other disciples, they saw a large crowd around them and the teachers of the law arguing with them. As soon as all the people saw Jesus, they were overwhelmed with wonder and ran to greet him. “What are you arguing with them about?” he asked. A man in the crowd answered, “Teacher, I brought you my son, who is possessed by a spirit that has robbed him of speech. Whenever it seizes him, it throws him to the ground. He foams at the mouth, gnashes his teeth and becomes rigid. I asked your disciples to drive out the spirit, but they could not.” “You unbelieving generation,” Jesus replied, “how long shall I stay with you? How long shall I put up with you? Bring the boy to me.” So they brought him. When the spirit saw Jesus, it immediately threw the boy into a convulsion. He fell to the ground and rolled around, foaming at the mouth. Jesus asked the boy’s father, “How long has he been like this?” “From childhood,” he answered. “It has often thrown him into fire or water to kill him. But if you can do anything, take pity on us and help us.” “‘If you can’?” said Jesus. “Everything is possible for one who believes.” Immediately the boy’s father exclaimed, “I do believe; help me overcome my unbelief!” When Jesus saw that a crowd was running to the scene, he rebuked the impure spirit. “You deaf and mute spirit,” he said, “I command you, come out of him and never enter him again.” The spirit shrieked, convulsed him violently and came out. The boy looked so much like a corpse that many said, “He’s dead.” But Jesus took him by the hand and lifted him to his feet, and he stood up." Mark 9:14-29.
Let's think about this father from Mark 9:14-29. He was alone with his son. The scripture does not say that he was there with other family members or friends. It's the father and his son, and it's clear that his child had been suffering "since childhood". You know what else is clear? That he had traveled from afar.....that everyone had failed to help his child.....even the disciples. His first words spoken to Jesus were "if you can". Jesus already knew the whole crowd's heart. "You unbelieving generation".
Of course he's full of unbelief.....no one had been able to stop his son's suffering, even the disciples, who were healing people left and right. Where did his unbelief come from? From his experiences, from the way he had been treated along the way. I can imagine that people were whispering to each other, "why doesn't he just accept that his son was just BORN that way, it was his DESTINY, it's something wrong with HIM.
But no, the father would not give up, only Jesus could help with his unbelief. He restored his "pieces" of faith. The "pieces" of hope. The "pieces" essential for BELIEVING.
I love this Matthew Henry Commentary about this block of scripture:
"The father of the suffering youth reflected on the want of power in the disciples; but Christ will have him reckon the disappointment to the want of faith. Very much is promised to our believing. If thou canst believe, it is possible that thy hard heart may be softened, thy spiritual diseases may be cured; and, weak as thou art, thou mayest be able to hold out to the end. Those that complain of unbelief, must look up to Christ for grace to help them against it, and his grace will be sufficient for them. Whom Christ cures, he cures effectually. But Satan is unwilling to be driven from those that have been long his slaves, and, when he cannot deceive or destroy the sinner, he will cause him all the terror that he can. The disciples must not think to do their work always with the same ease; some services call for more than ordinary pains."
My story is too similar, and because I went searching, God was able to reveal my error. When this happened to Olivia, I was so weak in my spirit (with a loud outer man), everyone else's unbelief wore on me. My problem was that I was looking to my friends, family, doctors, nurses to help me believe and they weren't. They did the opposite, which was my fault, not theirs.
For those who worry that I carry offense, that just isn't so. I've let go of the disappointment a long time ago. I'm not going to lie, it still stings a little bit when someone denies her injury, I am human. But just as I wouldn't throw away the depth of understanding I've developed by reading God's Truth, I will never throw away the vast education and Truth I've secured about the lies and dangers of vaccines, to believe in their ignorance. Never.
When I start getting down on myself and my situation and the fight I'm up against I just remind myself of David, as in David and Goliath. I'm reminded that he was teased....no one believed in him, but he went ahead and stepped into his destiny and defeated Goliath. Someday, Olivia and I will step into our destiny.
I feel we are getting closer by the day.❤️
I'm not alone, I'm with the One who restores all the pieces.
Last night, a couple friends and I went to the premier of the controversial movie ‘Vaxxed II:The People’s Truth’ .
I’ve been up front and honest as to what destroyed Olivia’s life, and it is detailed in this movie.
These are the people’s stories, so if you question my believability, sink your teeth into one of the many stories of lives destroyed and talked about in the movie.
Hundreds......thousands of stories similar to mine. Olivia’s name is 1 of over 7000 names written on a bus that toured the United States and is a moving memorial dedicated to those injured.
I was fortunate enough to meet and visit Polly Tommey, the executive producer of this movie and the mother of a vaccine injured son, in August 2017. This was three months before the first devastating hospital stay. As I rewatched the video, I couldn’t help but notice how unwell Olivia appears - especially compared to her today.
I will post the movie trailer in the comments.
Our conversation was videotaped and here is that link
Thank God she continues to get stronger and stronger with each passing day. I've been so busy researching and self-teaching therapies and protocols that have benefited my beautiful girl......and they are working!!!
Remember? We are on a new path. A path filled with new information on the damage her body sustained from her childhood vaccines.
Here are some highlights:
I have continued to wean her off damaging medications and with each decrease her vitality is coming back.
Her strength is 90% back from the 2018 hospital stay from hell! They discharged her with a "new normal". That new normal was tube feeding with no head control, no sitting and definitely no standing or walking. Look at this girl!!!! Sitting up straight and proud! (check out my blog for full story on our hospital stay - www.restoringolivia.com
She is able to move and control her arms and legs. Weird, right? After that disastrous hospital stay, she could not lift her arms and legs without assistance. I'm pleased to say that she is now free to control her arms and legs! So exciting!! I'm researching a condition that was mentioned when she was first discharged ---- functional paralysis -- I'll tell you more about it later.
We have a busy November on tap
- dental appointments to figure out how to get her smile back (with front teeth that is)
-we are working on eating skills
-continuing a protocol to give her body what it needs to recover, while taking away medications that have done more harm then good.
First day of school.....Where are we at this year - Grade 14?
I am so extremely thankful for our extremely busy summer. So much good is going on......so much straightening out to this long, curvy, crooked journey we've been on for too many years.
I have been making changes, following a new script....
She's getting stronger, and most important of all, the seizures are decreasing like never before. I need to cross my fingers and hold my breath as I share encouraging news that she had 10 full days with absolutely NO seizures!
Sitting here, thinking about this update I wanted to give you on Olivia and the same song played over and over in my mind. "One step Up" by Bruce Springsteen. Do any of you remember it? Not sure why it was on "repeat" in my head, I haven't heard it in years. I went with the teaser and looked it up and listened. Beautifully raw lyrics about a marriage falling apart....no matter what they did, the one step up was completely devoured by the inevitable two steps back. Timeless pain.
Maybe it was swirling in my head because I've been thinking about Olivia's journey so far this year. Initially, it was so hard to keep up. For us, it was one step up and one step back, kind of status quo for a period of time, leaving me to wonder if I'd ever get my girl back from the last horrific hospital stay. Was the damage just too much for her tiny little body? Just then a humbling whisper reminded me of an earlier time Bruce's famous song title became her life. Beginning in 2013, the backward steps in her health came at such an astounding rate, she was in a downward, backward, free fall spiral that seemed like would never stop. The only recognizable step forward seemed to be in my faith that the spiral could stop, that her health could be recovered, and that she could get her life back. I buried my head in research. I fell to my knees for wisdom. I clung to God's word and scriptures that told of of a different path, of a different story.
Like this one:
I've been blind----sided by what has happened with my girl. Taken down so many known, familiar paths that have lead us into darkness. It has been beyond rough. Like Bruce says in his song, "we've given each other some hard lessons lately, but we ain't learnin', we're the same sad story that's a fact". But this line resonates deeper, "another battle in our dirty little war". It's been a war, and we had been losing, one battle at a time.
I'm on this new path now. The better One from above. A new, unfamiliar path guided solely by Him, and, by gosh, it seems to be working. The light is peering in, the rough places less rocky and easier to navigate. Not smooth yet, by any means, but less rough for certain.
This past week some big steps were taken! After 16 months of sleeping in our main floor office, Olivia's bed has been moved back into her bedroom!!!
I'd say this is actually 15 steps, since that is how many steps we have to get to the second floor bedrooms, which she has to do 2 x/day now. Of course she needs assistance, but 16 months ago this was an impossibility......it's now a reality.
Second big step was getting her out of the house and attending the local parade, which happened to include her younger sister. We had a rough start to the early evening with a seizure that left her tired, in addition to a cut above her eye, but she rebounded and we were able to go and watch Olivia's younger sister participate in the parade.
Not perfect, but we went.
It worked.
It's a start.
I believe it's only going to get smoother.
Praying for the "5 steps up, 2 steps back" to morph into "10 steps up, 1 step back", and so on and so forth.
I have never attended the yearly Autism One conference....I've always been too stressed out with Olivia's health. I wish I could have attended this year.
Thankfully, I was able to watch several of the presentations via YouTube. Robert F. Kennedy's presentation was amazing.....especially the quote I created this video with.❤️
Olivia and I are looking forward to a busy summer of rehabbing! This verse has been on my mind lately for so many reasons.
Driving home from an appointment yesterday, I had to take this video of Olivia:
As I looked over to her, I realized how far she has come this school year.
She is sitting up.....on her own. She looks relaxed and interested in the cool wind blowing her beautiful blonde ponytail around. She appears more in control, a tiny bit closer to the life that should have been hers....one of independence...one of new experiences and intellectual growth.
Milestone days are always the hardest days, and sometimes I sink back into "what should've been" land.
Just being honest.
I had an interesting talk with a friend who has had tough times and gets stuck in "what should've been" land. Although I do visit (more frequently lately), I never want to stay and establish roots there....visiting is hard enough.
Often times, I'm there with my friend and we discuss my hope in Olivia's healing and the fact that it's my faith that leads me away from that darkened place. Without fail, I'm always challenged with the questions raised by my friend's breaking heart. Questions like:
"If God was going to heal her, why hasn't he done it yet?" Invariably, I defend. I argue. My main point always being that I have free will, and because she is my child, I have always made her life's decisions for her and some of those decisions caused her harm, even though my decisions were predicated by a set of guidelines I was told I must follow. I continued....How can God heal her if I'm always giving in to the doctors, to the medicine, to the things that always seem to damage her health? In the past, I've been forced to make decisions based on fear that is fed to me by the experts, and she always ends up worse....not better.
I'm sure you've heard me talk about this before. It's maddening.
But, then, my friend threw me a loophole by further challenging....."Yeah, I can see that, but why does it even matter? You always talk of God's power & might, so even if you are making all sorts of 'free will bad decisions', He could still do it.............if He wanted to."
How can you argue that point? It's true. He could do it under any circumstances, and sometimes He chooses not to heal.
So there I sat. Confronted with a reality that many, many people experience. I could feel the roots taking hold.
Just then I remembered a scripture from a bible study I did a while back --
"Do not give dogs what is sacred; do not throw your pearls to pigs. If you do, they may trample them under their feet, and then turn and tear you to pieces". Matthew 7:6
God has built me up. He has grown my faith and planted my feet on His sturdy foundation. This doubt is too destructive for me to entertain...even in the slightest way. I've learned to persist, and to pursue God. Others may try and give up. That doesn't have to be my story.
Our story is the next two verses:
"Ask and it will be given to you, seek and you will find; knock and the door will be opened to you. For everyone who asks receives; he who seeks finds; and to him who knocks, the door will be opened." Matthew 7:7-8
I am always learning, always reaching, always trying to find what I can do to help my girl. That is not stopping. I figure, God can always do something with what I learn, what Olivia learns and any progress for my precious girl is worth trying to move mountains.
Here's to an amazing summer of continued seeking, knocking and leaning into His Word, and His plan for Olivia's life. I continue to remind myself that He is the Author, not only of my faith, but of her precious life! He will bring down the story He has written for her from Heaven. In His Perfect Timing!! Just you wait!!
It’s been a while, I know. My time and energy have been monopolized not only with Olivia’s Rehabbing, but with my in-law's estate. I’m finally seeing a light at the end of the tunnel. For those who have lost their parents, one shortly after the other, you probably can relate.....
The estate sale is done and it’s time for me to get back to the thing I love most.....writing♥️
Are there others like me? Others, who just followed the rules and got burned? Others, who have sat on the sidelines and watched as other vaccine injured children have reclaimed their lives with drugs, therapy or supplement intervention?
I have spent years and years trying to fix it...you know, that mistake I made out of ignorance. Years and years of attempting an array of things to help her....only to have door after door slammed in my face.
And now, suddenly, a couple new doors are opening.
I absolutely love this scripture. To add some context, it comes from John's letter to the Church of Philadelphia, one of the seven churches in the province of Asia that he writes to about a vision he received from Christ.
Incredible words from an incredible time. Words that I can take hold of for myself, for Olivia. Words that are living for me and my situation today.
He knows my works. An open door that NO ONE is able to shut. He KNOWS I have but little power in my situation. He KNOWS I have kept my word and have not denied HIS name.
How much more can I ask?
Right now, with Olivia, it's subtle things. Subtle differences that have taken root over the last several months. To the average person there's no hint of anything big taking place. All in all, she still appears the same. She still has seizures (although not as many and not as hard), she is still a bit weak and not able to walk on her own (but can walk up the stairs to take a bath on most days). We are almost back to her baseline before the last hospitalization. Whew! That was a lot of work - but so worth it!
I don't know.....its just a feeling, like a change in the atmosphere of our situation. Hard to quantify but that feeling of daily dread has lifted. We are on a new road now and although the appearance of what's to come is "a cloud as small as a man's fist" (I Kings 18:44), I know the rain of blessings is coming. I can feel it.
I apologize for the lack of updates. Olivia's care has been more demanding and I am in the process of cleaning out my in-laws house. Unfortunately, they both passed away within months of each other . It's a difficult thing to sort through the remnants of two lives.....seeing the material things we collect along the way as just that..... material things that stay back and linger in the basement.
Even with all the hardships with Olivia over that last almost two decades, I feel I can still stand strong and recognize the goodness of God in my life. Yes, He allowed this devastation, but "allowed" is the main point. I CHOSE to trust and believe in a manmade system of health care. I was blind and ignorant to the choice I made - I did zero research on the dangers of vaccines and the damage that can and does inflict SO many children. Haunting U.S. statistics:
1 in 20 children under the age of 5 have or have had seizures
1 in 38 children are now Autistic
1 in 10 children have ADHD
1 in 6 children have learning disabilities
*CDC statistics
The takeaway for us is that He sustained her instead of taking her. He protected her body and brain from all the pharmaceutical medications --- especially from all the potent medications she was given in the hospital in early 2018. Remember....they said she would never be able to hold her head up again. Their "New Normal" prognosis can't stand up to the power of God's provision.
I was reminded of this gorgeous song last week. Bethel Music!❤️❤️❤️❤️
Lyric nuggets from this song that speak to me:
For Your mercy never failed me All my days, I've been held in Your hands I love Your voice You have led me through the fire And in darkest night You are close like no other 'Cause Your goodness is running after, it's running after me Your goodness is running after, it's running after me
Olivia the "snow bird" getting off the bus. The amount of snow we've had is crazy!! I choose to believe that for Olivia and I this is the beginning of our SHOWER of BLESSINGS!!! It's just in frozen form right now!
We've been so busy rehabbing and rebuilding, that I literally missed the 1-year anniversary of Olivia's last admittance to the hospital.....exactly 1 year ago this week.
Remembering it....takes me back. Takes me back to one of the worst hospitalizations of Olivia's life. One filled with ignorance, the use of intimidation and fear with her diagnosis, treatment and eventually her prognosis.
If you are new to Restoring Olivia, I'd invite you to read some of the past blog posts from that period:
Olivia is moving past this. All of this. Just another insult to her destroyed vitality. Rebuilding that vitality is of much more importance. I'm so thankful I've moved past it too.
Seriously.
I have.
I no longer want to be captive by those memories and the pain that lies within them. Of course, the enemy of my soul loves to take me back there, but God wants us to leave. To resolve. To look to Him instead of back at the unfairness of it all.
But, does that mean I shouldn't talk about our journey? Talk about what happened to her? Why would I bury our experience? For no-one else to see and learn from.
I ran into a woman at the grocery store who is a "prayer" person from a local ministry. She asked how Olivia was doing, and several questions later I was telling her of our hospital experience. Within an instant, she was asking (telling?) me that I HAVE TO forgive the doctors and that THEY WERE ONLY DOING WHAT THEY KNEW HOW. That they WERE THERE TO HELP. She had no interest in listening to the "WHY's" of Olivia's near-miss demise. She had some defending to preach.
Very unsettling. I no longer fall for this shaming tactic. A lecture from an individual who supposedly hears from God.
I get it. I am to forgive, which I told her I had done. But, she wanted my silence. She, herself, judged. Why I wondered?
People are so afraid of the truth.....even christian prayer warriors. They don't want to hear about the damage that was done to my perfect, beautiful girl by the conventional medical community.....they only want to sing their praise.
I no longer lift up and rely on supposed "religious" people in my community. They have never embraced our story and I only walk away feeling wounded. I always felt as though they were stronger, smarter and closer to God than I.
What a lie I believed.
I wonder if that is how many of the parents in my situation are treated. Love, grace & mercy to everyone --- except that mother who CLAIMS her child's life was destroyed by vaccines. No, not her, not ever.
This past year I've changed course. No longer am I the desperate mother waiting to talk with some religious folk...instead I am the desperate mother waiting for a conversation with God Himself.
I go directly to His Word. I focus on scripture like these:
He gives power to the weak, and to those who have no might He increases strength. Isaiah 40:29 😘
God has rescued us from the power of darkness and has brought us into the kingdom of his Son, whom he loves. Colossians 1:13
Jesus told his disciples "The knowledge of the secrets of the kingdom of heaven has been given to you, but not to the masses. Matthew 13:11-12
The more we study and learn the more God will reveal Luke 12:7 (NIV)
Indeed, the very hairs of your head are all numbered. Don’t be afraid; you are worth more than many sparrows. Luke 12:7
What I've learned is that I can move past this horrible experience without shutting it away in a cold, dark place in my heart. With God's help, I am able to forgive their inexperience and awful decision making.
This new strategy is working wonders. Do you remember the "new normal" they said would come of Olivia's life? The prognosis we left the hospital with?
Inability to eat real food - to eat and swallow
Inability to hold her head up
Inability to sit again
Inability to walk again
We are well past all these except the walking thing - check out the video from last week's physical therapy:
Remember the verse I was leaning on during those initial months home from the hospital?
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
He turns darkness into light.....not the other way around. I do not have to be ashamed.
I do not have to hide our difficult journey in the dark. His light has, and will continue to light the way. Darkness and shaming are not of Him.
Darkness comes. In the middle of it, the future looks blank. The temptation to quit is huge. Don't. You are in good company... You will argue with yourself that there is no way forward. But with God, nothing is impossible. He has more ropes and ladders and tunnels out of pits than you can conceive. Wait. Pray without ceasing. Hope. John Piper
