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, September 18, 2017
Thursday, August 24, 2017
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.
Monday, July 3, 2017
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!
Sunday, February 19, 2017
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.
Sunday, January 1, 2017
Saturday, December 31, 2016
These last couple months have been a roller coaster ride for our girl. Opportunities to celebrate quickly turned to obstacles, which then turned to questioning. Have you ever felt that way? I think every virus out there made itself known in Olivia's fragile system. Just as she conquered one, a new one swiftly jumped in to wreak havoc on her struggling immune system. The silver lining? She was strong enough to avoid a hospital stay, which, in my book is celebration worthy.
2016 revealed so many new pieces waiting to be placed....to be interlocked together for the bigger picture to emerge. Unfortunately, though, it's timing continues to lag. Pursuing God's wisdom for restoring Olivia became a priority for me in 2016. That's just what happens when answers do not surface by the world's experts, and my advocating heart knows there is much more to her story. The journey alone settled my heart, quieted my mind, and defined my role so I could patiently wait for wisdom to make it's way to me.
As this frustrating year comes to a close, I reflect on the lessons it has afforded me. I see my struggling with unrealized dreams for her progress, but see promise in the new pieces to her puzzle. I continue to learn how to increase my faith while facing signs of defeat. I am grateful she always rebounds. Olivia's health continues to ebb and flow, which is frustrating at the very least, but telling at the most. The new pieces truly tell her story.
Do me a favor.... Don't feel sorry for me that our journey hasn't yet taken off. Don't feel embarrassed for me - you know, like feeling embarrassed for someone as you watch them make a fool out of themselves. I'm not embarrassed and there is no way I will give up now. It's always darkest before the dawn. So many people feel inspired as they put faith in science to figure out cures for so many diseases. If we can have faith in science, why is it crazy to have faith in God --- that he can point us to the cure, that he can effectively lead us out of the dark.
I love this word by A.W. Tozer:
"God wants us to trust Him in the dark.
'I will go before you, And make the crooked places[a] straight;
I will break in pieces the gates of bronze, And cut the bars of iron.
I will give you the treasures of darkness, And hidden riches of secret places,
That you may know that I, the Lord, Who call you by your name,
Am the God of Israel.' Isaiah 45:2-3
It is heartening to learn how many of God's mighty deeds were done in secret, away from the prying eyes of men or angels. When God created the heavens and the earth, darkness was upon the face of the deep, when the the eternal Son became flesh, he was carried for a time in the darkness of the sweet virgin's womb, when he died for the life of the world, it was in the darkness, seen by no-one at the last. When he arose from the dead, it was the very early in the morning, no one saw him rise. It is as if God was saying, 'What I am is all that need matter to you, for there lie your hope and your peace, I will do what I will do and it will all come to light at last, but how I do it is my secret. Trust me and be not afraid.' With the goodness of God to desire our highest welfare, the wisdom of God to plan it and the power of God to achieve it, what do we lack?"
These words remind me that God often does his work in the dark, that his sovereignty in Olivia's life trumps my feeble attempts at "helping" him with his plans for her. In my last post I mentioned that it's like "feeling my way in the dark" when it comes to helping her. All attempts have not proven worthy. I may feel invisible, but I see the light, even if it's the size of a pin hole. It's bright enough to give me hope that He is indeed working in the dark, with his still small voice. I love this Chris Tomlin song "Winter Snow" sung by Audrey Assad. In my mind it describes how he works with us, and when we are moving a million miles a minute, like I have been for the last 16 years, we miss his gentle leading.
I feel stronger than ever as the year comes to a close. Refining and remolding has been good for me, even if they were relentless teachers. Thank you for continuing to follow our journey.
If you want to go fast, go alone. If you want to go far, go with God.
(the African proverb version ends with "go together".)
Friday, November 11, 2016
Specific, individualized testing that is 100% Olivia, her genes and only hers. This is the kind of information I wish I had 16 years ago. With new information comes a new strategy...one that has emerged in the last couple months. A new strategy pointing her and I down a new path.
For so many years, everything I tried for her was based on information for the "masses". We tried medication that worked wonderfully for most kids, but it didn't work for her. Biochemical supplement regime's that miraculously healed many children who regressed during toddler hood, but nope, not for her. Olivia always was the one that the intervention did not work.
Searching for answers to complex health issues is never easy. Right? Often times these answers are referred to as "pieces to a puzzle" since most stories like Olivia's seem to be "mysterious" conditions that are not identified and/or explained in the medical community. Sigh.
Sometimes, I think that I find new pieces and am hopeful for a moment until trial periods pass without any significant change. More recently though, I have learned that the medicines she's been on are like wrong pieces jammed into place, forcing adaptation of her unique puzzle until the edges are bulging out of place. Bulging and......causing problems. But, as we know, a puzzle piece either fits or doesn't fit - there is no in between.
I've referred to her chronic illness in past posts as "Metabolic Mayhem" and there is a reason. Her hypersensitivity to any changes in her system sets her back until homeostasis is reached again. Dictionary.com defines homeostasis as : "the maintenance of metabolic equilibrium within an animal by a tendency to compensate for disrupting changes."
Many times this can take days (magic number seems to be 4) or in some cases weeks. Why am I telling you this? Well.....even though I have new test results with new pieces, making the necessary changes in her diet, her medicine and her supplements mess up any homeostasis she has. I kind of liken it to turning a big semi around on a two lane highway. Although seemingly impossible, with the right care and time it most certainly could be done.
Moving forward with hope, I view these new test results as the straight-edged pieces that, when locked together will construct the outline or the border separating where the remaining pieces will be housed, with hope they will interlock perfectly. I have always done my puzzles that way - get the frame done first, then fill in with groups of related colors/images. Not only do I have a new direction with new information, but also, I finally have several different doctors/experts who understand what went wrong and may know how to systematically piece Olivia's fragile little body back together - piece-by-piece.
Although weaning her off the Keppra has been a rough piece withdrawal, it must be done. Her inability to break it down leaves a bigger mess for her fragile system to deal with. So many changes.....such little time. Yes, I am still weaning her. Ugh.
I must admit something. I haven't written because I feel somewhat embarrassed. My pride envisions amazing updates for you, but the material just isn't here yet. Right now her story looks pretty much the same. Really good weeks are followed by an illness that takes her down for a week or more. I feel a wave of relief when she is finally able to crawl out of the black hole that sucked the life out of her. I continue to be eternally grateful for the Medical Cannabis, it is the only thing that has given her the monthly reprieve.
She has gone from not being able to get out of her wheelchair as depicted here:
To walking on her own for days on end as depicted here:
Medical Cannabis is a miracle maker! I'm thankful and I want more of this sort of good!
I'm not very good with disappointment and setbacks. God has sort of been silent at this stage of the game, and that's ok. I choose to go deeper with him. I pray. I repent. I forgive. I believe. I withhold the will of my struggling heart to shout "What's taking so long Lord"?!
I was talking with a friend the other day. A friend that knows the difficulties Olivia has faced with non compliance of almost everything we've tried. She said such a profound statement. She said, "It's like feeling your way in the dark." That is my journey in one sentence. Feeling my way in the dark. Remember.....I've been walking this road for 16 years, not 16 days. Being alone in the dark isn't fun; it can be down right scary. No wonder I'm always so scared. Scared of making the wrong change. Scared of making too large of a change. Scared I'm not moving fast enough. Scared I am moving too fast. Scared I'm not giving her body a chance to adjust. It's just so exhausting isn't it?
Olivia's path to wellness isn't clear, like so many other people who suffer from complex chronic illness. We pray for that miracle. We partner with God with faith. And we wait.
Remember the story of the missing axe head in 2 Kings 6:1-7? It's the story of a couple of men who are set to build a house. While working, their borrowed axe head flew off the handle and landed at the bottom of the Jordan River. The most important tool for them to move forward with their plans of rebuilding is lost - down in the deep, dark water. There is no way they could find that master piece on their own. I can relate......it's like feeling your way in the dark.
Their answer was Elisha - a powerful prophet of God's. After learning where it had fallen, he took a stick and threw it to that spot and the axe head floated up to the top where they were able to grab it and move on with their building. They wouldn't have found it without him.
They had Elisha, we have Jesus. Only the True Healer knows the way out of the dark and that is who I am trusting. Remember, his "perfect love drives out fear" (I John 4:18), which includes my fear in the dark corners.....the dark shadows of her complex puzzle. He stops me from expressing the human reaction to fear --- the feeling of needing to run away, abandon my hope and take flight.
So what do I do? I wait - preferably patiently. I identify with Habakkuk. He was told:
For still the vision awaits its appointed time;
it hastens to the end—it will not lie.
If it seems slow, wait for it;
it will surely come; it will not delay. (Habakkuk 2:3)
Onward is over rated - I point you Upward until next time!