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.
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?
Monday, December 30, 2019
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.
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.
May 2020 bless you & your family,
Thursday, November 28, 2019
Wednesday, November 27, 2019
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.
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?
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."
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.
Thursday, November 7, 2019
Wednesday, November 6, 2019
Wednesday, September 18, 2019
Tuesday, September 3, 2019
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!
Looking forward to this upcoming year.....