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

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.

Have a question or comment for me?

If you have a question or comment for me feel free to leave it under the "comments" section on the bottom of each individual post. If you would like to leave a private comment you can email me at kellynjohnson94@gmail.com.

Thursday, October 29, 2015

Welcome! How about a front row seat witnessing a miracle?

Things can change quickly when you are finally on a correct path. For Olivia, this new path is seizure control with LeafLine Lab's Cobalt Medicinal Cannabis.

What do you think of the welcome picture? Although it may appear to be like any other kid painted, run of the mill birdhouse, this particular one is inspirational to me.  They were assembled a couple weeks ago.....on a sunny fall day by Lauren, her friend and I. Tim the Toolman's instructions were simple, but my anxious mind misread an elementary step in the very beginning which resulted in a complete tear out and rebuild. I never realized how much time it could take to pull out 20 nails and re-hammer them until I had to. But this is what a mom does. We take an extra couple hours of our day to fix our mistake - tear filled eyes are too much to bear.



Building this birdhouse reminded me of this writing from July 2013
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"Look at the birds of the air, that they do not sow, nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not worth much more than they?  Matthew 6:26

This verse has really weighed heavy on my mind lately ---- one of the key verses in the bible about worrying - and why NOT to do it. I guess my years of perfecting this shameful practice isn't something to be proud of. Seriously though, several months ago a friend who was struggling said, "Oh --- hey, I thought of you and the bible today. I looked out the window and saw a dead bird lying on the ground ---- isn't there a bible verse that says that God will feed and take care of them? Guess he forgot about that one. He froze and died right outside my window."

I thought of this interaction one morning while I was in the kitchen, gearing up to make breakfast for my family and I heard a "ping, ping ping" on the family room window. I looked out and saw a robin sitting in the evergreen looking right at me. Within minutes it took flight and smacked its beak into the glass, bounced off and retreated to the original position in the tree. I turned around and thought to my self, "hmmm.....that should be the end of that - it hit the glass, felt the pain, he won't be bothering us again." WRONG. It was just the beginning of a week long period of the bird not just hitting the window once, or twice or three times a day - the obsessed creature banged and banged over and over all day for 7+ days. We tried several things to derail her. We bought some helium balloons and hung them in front of the window, we put up a scarecrow, we lined the window with paper......etc etc. At one point she was hitting the window every few minutes for hours. It was in this moment that I thought of my friend and his dead bird. The creature that lay just outside his window for him to see and pose the question about God not being there for him - especially when the bible says He feeds and takes care of them all.  It made me think ------ maybe his feather friend wasn't  old --- maybe he was just banging and banging on the window, trying to get in a place that wasn't for him and he was so stubborn and couldn't give up and finally ended up hurting himself. He could have been so focused on what wasn't for him that he couldn't turn around and see the food and twigs that God may have had for him ----- say ---- across the parking lot.

Have I been banging my head against a window that was never mine to fly through?  I can't help but think about the bird's situation - In the moments of her obsession, she was so focused on getting in my house, that she was unable to look behind her at the bounty of twigs and other nest building material at her disposal. How does this scripture and this irritating bird relate to me? Are there closed doors for a reason --- yes. Does God open a once previously closed door in His timing? I would think so.......
Did the bird worry about her situation - obviously since she was so focused on it -- it became her obsession. Why does it have to look so confusing even when you are praying for Him to "go before thee, and make the crooked places straight" (Isaiah 45:2)

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But this one. This birdhouse was designed and painted by my beautiful girl while I was inside sitting on the couch tending to my heavily beaten fingers. Her choice in design is for me, for Olivia, for our journey. It is not a mistake that the entire front is a rainbow of colors, and the "welcom" (she ran out of room) is meant for this post ---- an invitation to you to follow this rainbow designed appointment by God -- just for this point in time.... for her sister. This rainbow on the front is the perfect size to cover my broken heart and is interpreted by me as God's promise. His promise that His will for Olivia is beginning to unfold, just as the rainbow for Noah was a promise for us all.

This is one of my favorite devotionals from Streams in the Desert:


For the Vision is yet for an appointed time…though it tarry, wait for it; because it will surely come, it will not tarry (Hab. 2:3).

In the charming little booklet, Expectation Corner, Adam Slowman was led into the Lord's treasure houses, and among many other wonders there revealed to him was the "Delayed Blessings Office," where God kept certain things, prayed for, until the wise time came to send them.

It takes a long time for some pensioners to learn that delays are not denials. Ah, there are secrets of love and wisdom in the "Delayed Blessings Department," which are little dreamt of! Men would pluck their mercies green when the Lord would have them ripe.

"Therefore will the Lord WAIT, that He may be gracious unto you" (Isa. 30:18). He is watching in the hard places and will not allow one trial too many; He will let the dross be consumed, and then He will come gloriously to your help.

Do not grieve Him by doubting His love. Nay, lift up your head, and begin to praise Him even now for the deliverance which is on the way to you, and you will be abundantly rewarded for the delay which has tried your faith.

I hope my journey to faith over the last 15 years will prove inspirational. Frankly, there is no logical reason why I retained it --- we had many rough years. Believe me, during those so called logical (or is it illogical) years I begged and pleaded for peace in accepting her as she was. That peace never came....peace only came while meditating on her healing, it appeared that God wasn't going to allow me to give up.

I am so happy you are following our journey! Please feel free to share this blog address with anyone you think would enjoy having a front row seat to a miracle in the making! We are blessed with your company and hope to bless you with each and every post!










2 comments:

  1. Oh, I love this so much! The rainbow comes after the storm. A storm we still remember with wet grass beneath still beneath our feet. But the beauty before us unmistakable.

    Love this and love you!

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    Replies
    1. Thanks Melinda! I sure love your words - they complete my writing with hope! ❤️ You

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