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.
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.
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Monday, September 21, 2015
We are home! - Thank you for the prayers!!
We were finally able to leave the hospital after a long 10-day stay. She is still not recovered from this huge setback and unfortunately lost a bit of weight, but we are home. Olivia is very fragile and extremely hyper sensitive to any upset in her system - especially when she gets sick.
If you choose to continue reading her story, you will learn my opinions on what I believe caused the decline in her health. It involves the wellness care she received as an infant, and subsequent advice during different stages in her life.
Today, though, I want to celebrate the amazing emergency medical treatment she received while she was at Minneapolis and St. Paul Children's hospitals. I am truly thankful for the caring, wonderful nurses that took care of my girl during that stressful and confusing 10 days and the open minded doctors at St. Paul Children's. They saved her life and I am forever grateful.
Tonight I thought I would share an entry to my journal originally written in August of 2013. We were well into the second year of her health crisis. These were very stressful days.
I’m tired...I’m worn...My heart is heavy...From the work it takes..To keep on breathing (believing) ...I’ve made mistakes....I’ve let my hope fail...My soul feels crushed...By the weight of this (my) world...And I know that You can give me rest...So I cry out with all that I have left...Let me see redemption win...Let me know the struggle ends...That You can mend a heart that’s frail and torn....I wanna know a song can rise....From the ashes of a broken life...And all that’s dead inside can be reborn...'Cause I’m worn...
I know I need to lift my eyes....But I'm too weak, life just won't let up.....I know you can give me rest....I cry out with all I have left...I'm worn....My prayers are wearing thin....I’m worn.....Even before the day begins....I’m worn....I’ve lost my will to fight...I’m worn.....So Heaven come and flood my eyes (Worn, Tenth Avenue North).
Worn - Tenth Avenue North Video
How symbolic this music video is for me. If you haven't taken the time to watch this 4 minute video please do. God has given me so much insight to my own struggling journey through this amazing song. I love how they use the "tree of life" which is barren and worn --- all the leaves dead and laying on the ground. In my rendition, Olivia is the tree, seemingly lifeless and consequently fruitless. As I watch the sun's brilliance shine upon the tree causing the dead leaves to rise as they turn a healthy gorgeous green, I feel as though it's Him rebuilding her "leaf by leaf". While watching the leaves rise, my mind's eye sees an added scene take place behind the blinders of my heart.
In this scene, God shows me the leaves being blown here and there as they desperately tried to stay on course to their proper home on the branches. As I watched this, I felt the nudge from Him saying that this 'wind" really represents the things that may have delayed His intent for Olivia's life. The wind, which has blown her leaves around, really represents the fear and anger I have entertained, the fighting Marty and I have partaken in, and of course the plan of the enemy's to stop her restoration. Add to this impatience, pride, unforgiveness and, of course, faithlessness. I've always been so focused on "chasing the wind". The wind is fast and that's how I wanted it to be ----- hurry up, figure it out, move on with life. Unfortunately, in hind sight I now know I was too focused on entering my promise land with the wind instead of chasing His love, His will and His ways.
I want Redemption to win. Most think redemption means "the action of saving or being saved from sin, error, or evil: "God's plans for the redemption of his world"." For me and my purposes, and what I see and feel about redemption lies within a couple other definitions, namely, an act of redeeming or atoning for a fault or mistake or better yet - "Recovery of something". Redeem, Recover, Rebuild the three R's that are on my heart as I write about my hope for my girl.
Olivia is not doing well. Hasn't been for a while. Sometimes as I try to go to sleep at night, I often think to myself, "What is the point of this?" Really, what is the point? Laura kindly reminded me of the meaning of my name: warrior & defender. I have been a warrior, fighting for my baby girl, but what has the fight produced? I will say it again ---- What is the point? I love the three verses she included with the email:
Isaiah 61:3 To all who mourn in Israel, he will give a crown of beauty for ashes, a joyous blessing instead of mourning, festive praise instead of despair. In their righteousness, they will be like great oaks that the Lord has planted for his own glory.
Isaiah 61:4 They will rebuild the ancient ruins, repairing cities destroyed long ago. They will revive them, though they have been deserted for many generations.
Isaiah 61: 7 Instead of shame and dishonor, you will enjoy a double share of honor. You will possess a double portion of prosperity in your land, and everlasting joy will be yours.
I love these words from her ---- "Faith is the "substance" - like actual weight and matter - your faith for Olivia & your family is not wishful thinking, it's faith - which is assurance! You know, that you know, that you know God is bringing healing. You can't not because it feels wrong or off whenever you entertain that because you already have the substance of faith (which is more than hope)."
I started a new study this past January ---- Beth Moore's The Law of Love - Lessons from the pages of Deuteronomy. Unfortunately, this study started when Olivia was going downhill on the Phenobarbital and consequently, I was unable to participate in the video showings. Even when I did go, I was either late and/or I was so checked out due to Olivia's condition, I wasn't able to "soak" in the truth that Beth is able to deliver so easily. This summer I decided to buy the CD set and I am now doing a private study with this incredible teacher.
I love soaking in her knowledge. Deuteronomy is the inspired word of God, written by Moses. It is about a generation of people who had been in a long-term rebellion. They were the definition of faithlessness and because of their refusal to believe God; an 11 day journey to their promise land took 40 years. Wandering in the wilderness. Sounds familiar. I see now, I personally spent the last 13 years there.
For many the theme of this book is "Remembering what God has done for us in the past - how he brought us through". For the Israelites, the 40 years of desert wandering comes to an end in this 5th book of the Pentateuch (The first 5 books of the bible).
Moses retold the story of the spy mission that originally happened 40 years ago (numbers 13, 14) the spies were sent out determine where they should enter the land that God had given them. 'See, The Lord your God has given you the land. Go up and take possession of it as The Lord, the God of your fathers, told you. Do not be afraid; do not be discouraged.'
But, they were afraid. They grumbled...'the Lord hates us; so He brought is out of Egypt to deliver us into the hands of the Amorites to destroy us. Deuteronomy 1:27 This idea was delivered by the 12 spies - the majority of the spies were afraid of the giants. But there were two spies - Joshua and Caleb - that had a different report. They said the land was fertile - the enemy was vulnerable and God was on their side. When we focus on the negative we become fearful and immobile. We could choose to believe that God has brought us this far, why on earth would he leave us now? God's direction and promises are the positive that we could focus on - it sounds so easy, like a no brainer - but then feelings and negative circumstances enter the picture and we lose direction.
In the Israelites case, God had already promised their victory, fear that He wouldn't pull through left them stuck. They did not remember the signs and wonders they experienced in the wilderness - or the exodus, for that matter. In my situation, I believe the direction for Olivia is the Gaps diet while being supported by the Pfeiffer supplement therapy until the healing takes place. I have read over and over that when we are confronted with these important decisions we need to move out in faith. The stumbling block for me lies not in failing to focus on the positives, rather, trusting that God will overcome the negatives flips me downward. Maybe because there have been so many intense negative situations in such a short time ----- one after another.
This is so hard for me to read. Especially since I am still in my own personal wilderness. It also begs the question - why did Olivia spiral down in 2012?
When I first put her on the GAPS diet, she was doing amazing!!! She gained 10 pounds in 2 months and things finally felt like they were going in the right direction. It was then that we decided to take her off the supplements she was taking from Pfeiffer Treatment Center. Within a month of being off, she crashed and it's been an extremely hard road to get her back on track. Although I received a lot of "opinions" about the supplements and why I was giving her so many, it now appears that they were actually keeping her body stable.
This blog is really about my Wilderness Experience. I am hopeful that as I write you will see me walk into my Promise Land of healing for my girl and our family.
Do you feel as though you have been in the Wilderness lately?
Do you feel God's leading?