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.
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, January 1, 2018
HAPPY NEW YEAR!
I realize that some of you only follow my blog sans Facebook. Wanted to catch you up on a couple FB only posts from the end of December. You can connect with those two posts here and here. In a nutshell, Olivia was hospitalized the whole month of December. Yeah......Not Good.
But now. Now it's 2018. A NEW YEAR. NEW BEGINNINGS!
If you've been reading my blog, you know I kind of get into knowing the biblical meaning for numbers. This post gets into the nitty gritty. Remember what 17 means? Overcoming. Complete Victory.
Well. We are starting year 18. Unbelievable. If you would have told me that first day, seeing her first shaking spell...... that I would still be trying to figure it out 18 years later, I would have cried even harder. Believe me, fear had the upper hand. It was the overcomer, not me. (sigh)
Year 17 gave me so much new information. New understanding. So much wisdom. So much in fact, I am in love with this verse from Isaiah 42:16
"I will lead the blind in a way that they do not know, in paths that they have not known I will guide them. I will turn the darkness before them into light, the rough places into level ground. These are the things I do, and I do not forsake them."
This can only lead to one thing ----- LIFE, which happens to be the biblical meaning of the number 18! Olivia reclaiming her stolen life.
Bring it on.
Hope to see you more this coming year. I have lots to share with you
xo
Friday, October 20, 2017
I prefer Answers to my Prayers
I've heard from a couple of my readers in the last couple weeks. They are worried about me after reading my last post, "Even If You Don't". Have I given up? Have I lost my faith? Why on earth would I write about the other side of the coin? That awful "tail-side" face of doubt.
Unfortunately, I am so ridiculously human that this journey sometimes gets the best of me. I felt led to share my weakness. There are so many reasons why Bart Millard's testimony was comforting to me. Hearing him speak about his son's chronic medical issues makes me feel less alone. I love his honesty about his struggles and I thought you would too.
Funny thing is......I've given up so many times on this crazy idea of mine.....that Olivia would be restored. But inevitably, I'm always drawn back to Hope again. It's like I get lassoed by an invisible rope that holds me tight and won't let me go. The idea that I could simply wiggle out of the loop escapes me as I allow the tightening to commence. The gentle tugging from despair's darkness into the light of day is a rescue that never gets old. Deep down I know I don't want to break free, unbelief is lonely and can present itself in so many ugly ways. Daylight feels safer.
It never fails. Each and every time I'm drawn in close, I receive some sort of revelation to my situation. In this particular instance, I came across a sermon from Bill Johnson at Bethel Church in Redding California entitled "Answer's Matter", and it reignited my hope for Olivia.
Answer's do matter.
This sermon provided me with so many nuggets of truth. Bill explains that "prayers without answers are pointless and that complacency and ignorance tolerate unanswered prayers. He went on to say that we were not designed for unanswered prayers.....that’s why there is no instruction for it in the Bible. There can be a delay, there can be room for a process, but we were not designed to coexist with unfulfilled prayers. We are made to co-labor with God to help release His will and purposes for our lives on this earth."
Say what? Just what I needed to hear.
Just when I tried to give up for the 100th time, I immediately feel the tugging of the rope from these life-giving words. So much to unpack from the first five minutes. Complacency. Ignorance. Co-labor.
Merriam Webster defines complacency as "marked by self-satisfaction especially when accompanied by unawareness of actual dangers or deficiencies". Is that my problem? As I dove in and studied related words other negative synonyms popped up, like conceitedness, ego, egotism, pride, pridefulness, self-admiration, self-assumption, self-conceit, self-glory, self-importance, self-love, self-opinion, self-satisfaction, smugness, vainness, vanity. And here I thought it just meant being lazy and unmotivated. Can this be true of me?
Complacency can and does become a heart thing when you are alone in a fight for such a long period of time. You begin to rely on you. After several years, most family and friends moved on with their lives while my heart remained the same.....broken. I couldn't shake my one objective....to save Olivia. And herein lies what could be my complacency. Pride, self-opinion and ego trump the real Savior. What's equally enlightening is that I can have this misplaced pride while experiencing the feelings which are the exact opposite.......words like self-loathing, self-doubt, timidness, passivity and shame. I didn't protect her. No wonder I feel like my prayers for wisdom go unheard. It's like these words....these feelings are a pack of wolves chasing me here, then there.....always towards the darkness, not the light. Words like should've and could've dominate the night.
This sermon reminded me of truth.
Every. Single. Time. Jesus ministered to someone, he brought deliverance.
I was reminded of Matthew 4:24 "News about Him spread all over Syria, and people brought to Him all who were ill with various diseases, those suffering acute pain, the demon-possessed, those having seizures, and the paralyzed--and He healed them."
There is just one instance they were not to bring healing, that of the epileptic boy. Does this verse sound familiar to those who have followed my journey this far? I have written about this Bible story so many times. I've even gone as far as to say that Olivia and I are the Mother/Daughter version of this Father/Son journey. You can read my older posts on this scripture here, here, here & here. Needless to say, I've gotten some mileage out of meditating on this story.
To refresh your memory, the story is about a father, whose son has been having seizures since childhood. He has spent years trying to help his son. He hears about the disciples and takes him to them, but they are unable to heal him. The disciples do not understand why they are not able to free the child, and therefore brings him straight to Jesus. He chastises the father and disciples about their lack of faith and delivers the child. Read the full story here (Mark 9:17-29).
Monday, September 18, 2017
Happy Birthday Olivia❤️❤️
I. Will. Never. Give. Up. On. Her!
No to complacency, yes to perseverance.
#gettingclosereveryday #shesinthere 💞💞
Thursday, August 24, 2017
Even if You don't
All those years of trying this drug or that one, this alternative treatment or that one, listening to this expert or that one. Waiting for important new appointments, definitive test results, diving into studies and articles with the hopes of finding a clue to what the heck stole my beautiful girl's soul --- it all caught up with me. All at once. It was inevitable.
Hello......((hand raised high)).
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.
I leave you with this beautiful rendition of It is Well With My Soul by Audrey Assad. This incredible hymn was written by Horatio G. Spafford in 1873 as he sailed over the ship wreckage that took the lives of his four young daughters. The "Even If" song by MercyMe references this famous line.
xo
Monday, July 3, 2017
Freedom - what's your definition of it?
Olivia needs a special kind of freedom, as do I. I think we both are looking for freedom from her chronic illness, from scary seizures, from suffering. Freedom from the hammering disappointment of lost dreams...freedom from dependence on drugs that never work.......freedom from whatever binds us.
For Olivia, this picture represents the beginning of her future:
It's her new gait trainer and it was finally delivered last Friday. It's kind of like a baby walker for an adult. Olivia lost her balance and ability to walk several years ago. She is slowly getting better and really needs the freedom to walk without support and build her weak muscles back up.
I know I promised to update more. Especially after I did this:
It is not the critic who counts; not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood; who strives valiantly; who errs, who comes short again and again, because there is no effort without error and shortcoming; but who does actually strive to do the deeds; who knows great enthusiasms, the great devotions; who spends himself in a worthy cause; who at the best knows in the end the triumph of high achievement, and who at the worst, if he fails, at least fails while daring greatly, so that his place shall never be with those cold and timid souls who neither know victory nor defeat.
I dare greatly for my girl.
Enjoy the fireworks!
xo
Sunday, February 19, 2017
Wisdom seeking
As I thought about what I was going to write to you tonight, the image of a "cloud, the size of a man's fist" came to mind. Immediately, I thought of 1 Kings 18:22:
"The seventh time the servant reported, “A cloud as small as a man’s hand is rising from the sea.” So Elijah said, “Go and tell Ahab, ‘Hitch up your chariot and go down before the rain stops you.'"
Remember that story? It feels incredibly personal to me in this season of my journey. Elijah, the mighty prophet of God, doing what he does best - predicting and proclaiming the power of God in the midst of waiting for a sign.
Yes, the drought was coming to an end, he knew it. On the seventh visual attempt, the servant saw "the cloud as small as a man's hand". For him, it was rain; for me, it was wisdom. My fervent prayers for wisdom to help Olivia began several months ago. At first, it was a snippet, here, then there, but soon it became a billowing cloud that took my breath away. Making the changes necessary seemed to move in slow motion, like a slow-moving storm with fiery lightning and loud claps of thunder. Have you ever felt like you have wisdom on a situation, but struggle to move forward in that wisdom? Does that make sense?
What interests me about this particular scripture is that it happened the "seventh" time the servant looked outward for any sign. Have you ever wondered what the scriptural meaning or symbolism of certain numbers are? For instance, seven is the number of completeness and perfection -- three is the trinity of the persons of the Godhead, five symbolizes grace, eight being a new beginning....etc etc. Where am I going with this, you ask? Well, every year I would search out the meaning for the corresponding year of my sentence to Olivia's suffering. Each year would come, and my reality seemed to be the opposite of that year's meaning. Year twelve, in my definition, was the beginning of the fall; thirteen I was cast in a shadow of confusion and chaos. Fourteen, fifteen and sixteen were represented by deep division and hopelessness.
By year sixteen I knew I had to get the fear under control. Why did I wait so long? God's Word says "love cast out all fear". Love. To love is easy......right? To love a child who suffers intensifies the meaning of love....and fear. It's heartbreaking but it is a wise teacher. For me, fear has been a big one. 2 Timothy 1:7 says that God did not give us a "spirit of fear". Intellectually I understand this verse, but applying it and keeping fear out of my heart was another story. Seizures are scary. Uncontrolled seizures instill a fear like no other. Who likes something that is uncontrollable? They are ruthless, they are relentless and they do not play by the rules. They are thieves. They mock in their ability to control. They destroy everyday moments and seek to prove their vigilance and dominance. Even if I knew intellectually that the "spirit of fear" I was feeling daily was not from God, I was defenseless in eradicating it from my thought process. I tried so hard to operate without fear but I always lost my way. Sure, scripture counsels to take your eyes off your circumstances; but seizures demand your undivided attention.
Fear distorts and does it's best to define. Oh, if I could only have a nickel for every piece of "well meaning" advice I have been given along the way (as my heart was gripped by fear) I would be a rich woman. A couple of my favorites have been, "God has a plan for Olivia's life"(i.e. whatcha worried about), or "Well, you get what you get.", or "At least you have her". My humility remains quiet, as my spirit begs to scream. I realize that their logical comments lack the depth of experience...I know. I get it. Intellectually, we can say a number of logical truths that are quickly dispelled once it's your heart on the testing train. Logic, in many cases, is the absence of personal fear, but can accompany pride.
Lisa Bevere has an interesting way of describing fear, as she replaces the word "love" in the beautiful verbiage of I Corinthians 13:4-8:
Fear is impatient, and unkind, while envies and boasts, it is arrogant and rude. Fear insists on its own way, it is irritable and resentful, rejoices at wrong doing rather than in truth. Fear bears nothing, believes nothing, hopes nothing endures nothing. Fear will end.
God has been incredibly patient with my struggle with fear....even in Olivia's seasons of daily seizures. She continues to have her good weeks and bad. Learning more about "love" has dominated my study. To love when it's hard. A complete study on love has to include the lesson on vulnerability, as C.S. Lewis so eloquently describes:
To love at all is to be vulnerable. Love anything and your heart will be wrung and possibly broken. If you want to make sure of keeping it intact you must give it to no one, not even an animal. Wrap it carefully round with hobbies and little luxuries; avoid all entanglements. Lock it up safe in the casket or coffin of your selfishness. But in that casket, safe, dark, motionless, airless, it will change. It will not be broken; it will become unbreakable, impenetrable, irredeemable. To love is to be vulnerable.”
― C.S. Lewis, The Four Loves
In reality, my vulnerability does not stop with Olivia. I am also sharing my vulnerability to you, my readers as I choose to walk out this journey with you. I am vulnerable in disclosing how it is I keep on believing for a healing that to many seems impossible. I also feel vulnerable to God's leading.
For instance, after the full Exome genetic testing results came back completely normal, the geneticist referred me to several doctors at Mayo. Excited for the new doors God was opening, I recently spent 5 days traveling back and forth to Rochester to meet with the best and the brightest. I thought there would be answers to some of the "pieces to her puzzle" I felt were revealed in that rain cloud of wisdom. As I look back on the blur of all those appointments, I see the systematic slamming of each one of those doors. All four specialists rebuked any possibility of understanding Olivia's "illness" and their inability to provide any treatment for her "rare" disorder. Although one of the doctors ran some blood work to confirm or deny an existence of autoimmune possibilities ( this blood work returned completely normal), the rest simply looked at her (with no examination) and confirmed there was nothing they could do. My struggle with this whole charade moves past fishtailing down the middle of southbound Highway 52 on some invisible black ice. I question why on earth the doors were open in the first place. My vulnerability to love, and Trust in that Love gets weak and seeks to question His leading. The weaker I get, I begin to wonder if there was a carrot on a line at the end of a very long stick. Uncle already.
Now that is vulnerable.
So. The only thing I can do is to go back to that familiar word and command that has kept me going for 17 years. Trust. Its the only thing I can do. Trust in His Love.
"Only those who love are fearless. Love seeks to restore....So we must Love fearlessly" Lisa Bevere.
Remember Elijah from the beginning of this writing? He was a prophet and still struggled with his feelings and emotions. He felt fear and loneliness. God, however, reminded him that He has work for him to do even while feeling like a failure. One commentator explained a lesson from Elijah's life. "We are never closer to defeat than in our moments of greatest victory".
Satan instills the fear. Satan is the thief and our enemy. Yes, we do "Get what we get"; but, sometimes what we get gets stolen from us.
We are now in year 17. What do you think 17 represents?
Overcoming the enemy and complete victory.
I'll take that.
xo