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?
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.
Friday, June 7, 2019
Thursday, June 6, 2019
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!!
Friday, May 24, 2019
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♥️
Sunday, March 3, 2019
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.
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
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!
Thursday, January 31, 2019
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:
Where do you looketh?
Back Here Again
Can Wisdom Be Elusive for the Wise?
Valentine Fever? When loving the broken is this year's plan💔
Faithfully Waiting for that "Suddenly" Moment. Can We Bounce Back?
Repentance - For the Race Set Before Us
The Perfect Storm
Assumptions Can Be Deceiving
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.
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
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 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.