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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Sunday, May 13, 2018
Happy Mother's Day!
Happy Mother's Day from Olivia and I❤️
I was reminded of this picture today, and my visit to the Cathedral of St. Paul while Olivia was in the hospital this winter. I stood before this.....mesmerized by the beauty.....and snapped a photo with my phone. A powerful image of THE Mother/Child.
Reproduction of Michelangelo's Pieta at Cathedral of St. Paul
For those not familiar......this is a reproduction of Michelangelo's Pieta sculpture depicting the Virgin Mary cradling her dead son's body, Christ Jesus, after He was removed from the cross on that fateful day.
So many feelings/emotions and lessons hit me with this visit. Not one mother I know can completely identify with the pain she must have endured. As I gazed at her downtrodden face, age-old truths soothed my own grieving heart, which still resided at a local hospital bed just a few miles away.
A mother loves, yes. But more importantly, a mother endures......she sacrifices......she suffers with her baby, no matter the age.......and at some point, she learns to believe in the Sovereignty of her situation......even when it stings.
I am thinking of all mothers today, but I'm especially thinking of those kindred spirits who have had to become warriors for their children......for those who have had to cradle them while they are having seizures.....praying for them to just stop. To all those mothers who are wrestling with sick children and beating themselves up for making that common decision to vaccinate, only to end up with a child that sits in the corner stimming all day....or banging their head on the wall.....or screaming that familiar high pitched scream......or...... (insert a child's individual heartbreaking symptom).
I'm thinking of these Momma's and their breaking hearts and I humbly point them upward to the only Hero.....Mary's Son.....the only One who can truly save them and gracefully pull from their hands the responsibility to save. Only He can.
I tried to be the hero for a day
But all my superpowers failed to save
So I turned in my ego and my cape
I was made to fly but not this way
It all starts with breathing You in
Breathing You in deeply
I've been drowning under my skin
No one but You can save me
My weakness is my honor not my shame
Leaning is my portion not my pain
I was frantic till You changed the pace
You won't give me more than I can take
You're my hero
You're the only One
Who is strong enough
You're my hero
You always pick me up
Before I self-destruct (Save Me Steffany Gretzinger)
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