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.

Monday, January 1, 2024

Happy 2024! The Year to Find the Missing Piece(s)

Happy New Year! 2024! I hope this message finds you well.

A singular puzzle piece. This has been on my mind since the last time I shared my heart with you.

Or perhaps, a grouping of pieces arranged in different, colorful configurations. I'm sure you are familiar with the symbolism of the puzzle piece within many different autism communities or amongst individuals who belong on the Autism Spectrum. It's recognizable.

Two decades have come and gone as I've searched for the missing piece (or pieces) to help Olivia. It's been a lonely journey, never really feeling like we both have had much significance in our hopes and (unrealistic?) expectations.

During this hospital stay, that word, "significance" has dominated my thinking. What is true significance? What is it that we all truly want (need?)?  I realized that the lack I'm feeling is wondering if we are significant to God, that He sees us.....cares for us in our suffering. If I base it on my feelings, it certainly hasn't felt like He has. Listening for a Voice that has been silent for years. Or, so I thought.

Hearing His voice has to be a choice. 

I've been reclusive lately, both physically and spiritually. Running from any or all "assignments" I partly hear because my heart can't bare further failure. Going deep is amazing unless you aren't prepared for the possible detours...or further detours. Finding missing puzzle pieces require the search. You know, like when you are searching for your child's favorite puzzle piece lost in your house somewhere.

What tends to happen? You give up. Even though you try and try to visualize where you last saw it, only to realize that it is certainly a lost cause. Years go by, your child has grown up and that old puzzle with the missing piece, you donate it, mentioning on the box - "just one missing piece, please still enjoy". You move on. You forget about how much it bothered you to actually visualize where that missing piece only to never find it. But then it happens. You clean out closets, like a deep clean, and there it is. 

What helped me visualize my rededication to Olivia's missing pieces and God's job for me? In 2022, during the Covid situation, a sweet lady at the local Nothing Bundt Cake, with her cute little black mask with painted on red lips and pearly white teeth. She looked up at me and said, "You are just beautiful today. Are you Irish?" Shocked by how adorable she was, I laughed for the first time in a while. She looked down at my online order and looked up with what I could only imagine a big smile behind the oversized mask and started singing to me.  

She sang, "Kelly Kelly Kelly, K-E-L-L-Y". You know, the song from the hit TV show Cheers. The song from Woody to Kelly, the love of his life.

Unexpectately, my eyes filled with tears, knowing deep down that she was prompted by my patient Lord to sing a song of acknowledgment, if not significance to my musically castrated heart.  Who would have guessed that? 

Back in the 90's people would sing that section of the "Kelly Song" to me all the time, I haven't heard it for years.

When I walked out of the store, I wiped my tears and instantly felt the need to google this infamous song. To hear the rest of HIS message to me, the God who has been waiting. Waiting for me to finally let go, to finally let Him back in, to pick up my cross and assignment, regardless of the outcome. I found myself remembering  and appreciating  those bible stories of people and their faith waxing and waning through years of their individual trials as they attempted to walk by faith when the "sight" was looking dim. Abraham, Sarah, David, Moses, Hannah, Joseph, Gideon & Job to name a few.

Here it is, if you haven't heard it before:

As I listened, I knew immediately this was a love song to me .....and not from Woody, but from my Father in heaven, you know, the one I've been running from like a spoiled brat. 

Listen in:

"Kelly, my darling, you are my sunshine. When we are together, I feel fine."

"Your smile is so lovely, your hair is so clean (ha), you make me feel like the whole world is mine." (understatement)!!!!

"Kelly, Kelly, Kelly, Kelly Kelly K-E-L-L-Y. Why because you're Kelly Kelly Kelly Kelly Kelly Kelly Kelly of MINE."

"Mine, Mine, Mine, Mine, Mine Mine Mine Mine Mine Mine....MINE."

If you watched the short video, you probably heard the response from the actress Kelly:

"Woody, that was beautiful." "You really liked it?" said Woody.

"I liked it more than anything", said Kelly.

"Thanks", replied Woody.

"SO.........where's my gift"? Kelly said while looking around the room, looking like a spoiled brat.

I can't help to think there was a message here for me.

That message can only be that He is my gift. His love, His patience, Him not giving up on me, Him showering my soul with the only gift that matters. That I am His and He misses me. He misses our time. He misses me crying out to Him for strength, for guidance, for healing for my girl.

He wanted to guide me to the ragged pieces that were stolen, not lost,  from the puzzle box. Only He can make them suddenly appear in that deep cleaned closet of my soul, after the giving up was given up. Only He can lead me to the treasure trove of knowledge that for some reason was only destined to appear 24 years later.

So, here's to the New Year, to New Beginnings, to New Wisdom, to New Knowledge & finally New Possibilites for Olivia and her one and only life here on earth. How could I ever give up when I have the Almighty leading me on and calling me His sunshine!