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?
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.....
Sunday, July 14, 2019
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'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.
Being on the right path makes all the difference.