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, August 24, 2017

Even if You don't

What a summer....for some reason a tougher one then usual. I broke my ankle in May, Olivia was hospitalized for two weeks in July.  Two biggies....followed by several other incidental's that literally sucked each grain of "time sand" down the hole at an alarming rate. It's gone.
I know. I told you in May that being confined to a chair with my non-weight bearing cast could be a good thing. Theoretically, I could sit back and write.....to update you on Olivia and the steps I was taking with her restoration. (Sigh)
What actually happened is far from the original plan. 
You see.......my broken heart got a whiff of something my brain has known for a long while.....Olivia would have graduated from high school this year. Right now, she should be testing the waters of independence in a dorm room in a city not too far away. This was a milestone that took more out of me than I ever imagined.
Reliving it all.

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. 
Inspirational writing has always been my goal. You know......God is good - when? - ALL the time. But the last three months, I've been in a slump, unable to lift my hands. I've fallen in this deep hole that is far far away from inspiration and fairytale like. My mind has wandered and became fixated on images like this one:

Images of Olivia before her health took a serious dive, before there was a wheelchair in every picture. When she was free to walk (even run) around the house independently. She was about 8 here.
Caring for a chronically ill child or loved one can literally suck the life out of you. I'm just being real. We probably have more bad days but most say they would have it no other way. I think the term "Warrior Mom" was birthed in witness to this unconditional love and dedication  - don't you?
The bad days though. We all have them - just on varying degrees. Just yesterday I heard a "newer" Christian song on the radio and the beautiful words were just what I needed to hear.  I was curious if there was a story behind this amazing song and indeed there was. Bart Milliard, the lead singer of MercyMe, has a 15 year old son with Type 1 Diabetes. His five minute testimony is available right here (in blue)  MercyMe "Even If" Testimony
I can identify with so many of his words. The good and bad days, spending mere moments in selfish denial, when reality yanks you back to what's always waiting for you, the illness that won't go away. That darn "chronic" thing. I know there are so many people like me, people who have dived into the Bible and the healing scriptures. These are the people that know God can heal them, but for some reason He hasn't. I love that this song includes lyrics based on the "Fiery Furnace" scripture in Daniel 3:24-26. 
But, this. I have to quote him here - because in here lies some truth for the person struggling with an unanswered prayer. 
"There are times when it doesn’t feel ok and I just want want to feel like  Shadrach, Meshach and Abed-nego and have the courage to stand in front of the fiery furnace and say 'I know that God can deliver us but EVEN IF he does not I’m still not going to surrender, I’m not going to bow because He’s worth it. Because deep down when there are times that I forget who I am, luckily He never forgets me. And there are times when I want to give up, but the bottom line is that the only way I can get up and go through this is because of what Christ has already done. No circumstance will change who I am in Christ. It’ll try and sometimes it feels like its going to win. Regardless of what we go through, He’s bigger. We have to believe that with all of our hearts, otherwise, what are we doing?" 

Yes, what am I doing? Living in the "what should have beens" has not furthered my quest for Olivia. Not one Iota. But I couldn't help myself. I'm human.
If you take the time to listen to his testimony you feel his heartache over what he has perceived as his "failure" when it comes to his son.

Hello......((hand raised high)).
If you've been following my blog for a while, you've read my own struggles with feeling like a failure. As time goes on, I feel as though I'm not the only one with these feelings. Each and every time I take Olivia to her doctor's appointments, I think they feel it. I remember listening to a podcast once where a physician talked at length about the waiting room filled with the patients he hadn't been able to help, i.e. his "failures".
Feeling like a failure is universal and is the reason why this song has over 14 million views. At the end of the day, we all know the meaning of his lyrics. He talks about winning some, and how it feels to lose some. That it's easy to sing when there's nothing to bring us down - but to then be held up to the flame - what will you say then? To hear that it only takes a little faith to move a mountain, acquire that faith and still have God choose to leave those mountains unmoved. To learn and reinforce the notion that at the end of the day, with all things considered, all feelings aside, that our hope is in Him alone. It has to be. And just like that, being a failure is no longer an issue.

So, where does this leave Olivia? In some ways she has remained in the same old rut - really good days followed by an illness which leads to several bad days.  Old news. 

But there is some new news ---- this year she will be a "Super" Senior at her same old school. A quick google search on the definition of super supplied me with some amazing visions for this upcoming year. 

I'm praying for an excellent, superb, superlative, first-class, outstanding, marvelous, magnificent, wonderful, splendid, glorious; fantastic, fabulous, terrific, ace, divine, killer; smashing, brilliant year. Let's lean into that one, shall we?
In many ways, the last three months have not been wasted. I've spent many hours pouring over past notes and testing performed on Olivia over the last several years and will be doing new testing involving that new direction I was considering several months ago. Hospitalizations have a way of derailing any gains she had made earlier in the summer. Interesting to note --- this scripture that keeps popping up in my studies and seems to be more relevant to our current situation than anything appearing as "logical":

Isaiah 42:16 

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.

Oh, all my fellow warriors (which I know there are many). You have to be a warrior to remain strong in the fiery flame of chronic illness, especially the "rare" ones. Only a warrior can deal with the onslaught of heavy, deep emotions and uncertainty of unresolved, scary circumstances that come with a damaged body and the symptoms you are told are "unheard' of. For me, this song reaffirms my belief that the hope instilled in us is the true power. It begins with Hope and He transforms it into the faith that can eventually move the mountains in our lives - even if those mountains were placed there by someone else (which is a whole separate subject).

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.


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