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.

Sunday, July 1, 2012

Struggling faith

Courage doesn't always roar...
Sometimes courage is the quiet voice at the end of 
the day saying,"I will try again tomorrow" M.A. Radmacher

It's been a while - I know!  June was a crazy, icky month.

I think the end of June was the climax to a heavy, burdensome start to summer.  It really began with a disheartening meeting with school administrators on Friday, June 8th - literally the first day of summer.  What should have been a 15 minute meeting to discuss the final details of her move from the elementary school to the middle, soon became an hour and half of defensive lobbying for her right to stay in the "level" of classroom she was currently accustomed to.  This "administrator" felt her needs would be best served in a more "intensive" classroom with children confined to wheelchairs with high needs.  This is a classic example of people making decisions for another without a complete understanding of the whole situation.  This woman totally blew the seizure portion of Olivia's care into an unrecognizable animal that needed to be confined for supposed "safety" reasons.  I respectively waited, as she muddled and rambled through explanation after explanation of worrying about Olivia's care at 21, until I could no longer subject myself to what this woman was speaking over Olivia's life.  Seated along side Olivia's "core" team, the lovely women who have cared for Olivia for 7 years, I finally blew my top!  An hour and a half later, the paperwork was completed for her move to the school of my choice.  Later, I apologized to her teacher for my reaction, and to my surprise her team had gathered after the meeting and they all talked with excitement, seemingly impressed with my decision to stand up and stop the meeting's direction.

In addition to that POW WOW, the proclamation of my faith has been taking a silent beating.  Comments like, "oh, well, we think you should be realistic about how much Olivia could recover", spoken by a friend who frequently talks with others about the wonders and amazing miracles that can happen when you pray to God.  Seriously, isn't that what faith is? To believe in that "unseen"?  Where does the word "be realistic" get inserted?  What about Romans 8:24-25 :

"For in hope we are saved. But who hopes for what he already sees? However, we hope for something we have not yet seen, and we patiently wait for it.

Add to this, a hard month of taking her off a major supplement and I am certifiably crazy, or maybe just off my rocker (HA!) Sorry if I am a complainer!

I guess I didn't realize just how much I was struggling lately. Having a disabled child has it's financial pressures.  Treatments, supplements and expensive food top the list for financial burdens in an economy that has seen better days.  I am thankful for Marty's amazing ability to keep the finances rolling in ~ especially when it is extremely stressful at work.  Fear has a way of creeping in when financial uncertainties arise - don't you think?  :(  Big sad face that represents my fearful heart.  Certainly, I have been wrestling again in a way that is familiar, yet foreign to me.

Several Sunday's ago, I rolled out of bed and felt an immediate need to go to church. Olivia was up, so I had to get her stuff together and as always I was running out the door with a mere 5 minutes to spare.  Usually, when I run late Lauren will just come to "big kid" church with me, instead of going to children's church.  For some reason, on this particular day, she was adamant about going to children's church.  As I was finally seated, I made a big sigh and settled in.  The pastor's sermon was in a series called "APPS : powered by Proverbs".  He started with some really funny app jokes, but quickly moved into the main point of his sermon ------- Wisdom.  As I listened, I began to perk up and soon felt as though this sermon may have just been written for me and my recently acquired heavy heart.  He talked about Solomon - how, when asked by God what he would like, he chose wisdom on how to govern the people. Wisdom, the jewel I have been searching for.  The very thing I need in Olivia's situation.  I used to feel led.  I felt I was going somewhere.  Then, June rolled around, and nothing.  If you have checked my blog, my last entry was May 26th.  I felt like I lost that feeling of being led.....of knowing what to write, what to do next with Olivia.........and that familiar feeling of dread, of fear and hopelessness was present again.

The sermon opened my eyes to what could be my problem.  My heart had changed.  I was fearful (again?).  I apparently didn't trust God to take care of our financial situation (even though our past proves that he has over and over).  So, in a nutshell, I was overly focused on not wanting to lose the little bit of what we do have financially. There just seems to be obstacles, and then more obstacles.  The pastor talked about God giving wisdom to people who's greatest desire is for others. He asked, "Is it about you".  Solomon's heart was in the right place.  Mine, not so much.  I truly believe my faith was under attack and I was taken out by immense spiritual warfare.  I do not think I even knew I was going down.

It was communion that Sunday, and they had some special music.  One addition that stuck out for me was this beautiful young girl who played the violin.  For some reason, I just love the sound of a violin.  When Olivia was a baby, channel 2 had a special on young musicians and I remember seeing this beautiful girl with long blond hair playing the violin.  It may sound silly, but I thought that someday Olivia would do just that.  Seeing that young beauty and her violin on the Hosanna! stage brought me back to that earlier dream for Olivia.

As I looked up from the benediction my eyes rested on the group of prayer partners that had so graciously devoted their weekend to pray for others.  I was debating on whether I should go up or not? Do I have time with Olivia at home? Soon this questioning stream was cut off as I scanned the prayers partners....and my steps began as I spotted the angel that was put there for me - it was Jan!  She would soon be seeing me walking toward her in a desperate way, as I struggled to even say hi before I burst into tears.  I know she didn't know what to do.

I think she thought that something "serious" had happened to Olivia.  Finally, I was able to start talking with her, revealing what had just been revealed to me through the sermon.  She continued to lift my spirits until I told her my feelings about the violin dream.  She shifted gears and told me that Olivia will be playing the violin in heaven..........errrrk  wrong answer.  Again, I must remind myself that this jewel of wisdom, what He is teaching me is for me, not for others.  It would be easier if that were the case, but it isn't - it never has been.

She encouraged me to go home and stand in front of my bed and tell God that I trust Him with everything, that I trust He will catch me, and then fall back onto my bed.  I have to admit, when I finally did it, it did feel good.  She told me that the pastor met with the prayer partners on Friday evening and told them that he completely changed his original sermon - to the point that it did not match the sermon notes. It matched my needs perfectly!!! Thank You God!

So as I emerge from this darkness once again, I am overcome with thankfulness that God so patiently and graciously puts up with me.  That He alone can fill me back up with courage and suddenly I am brave again.  I feel as though I have humbly crawled back into his lap as he covers me with his Divine purpose for my life, if I can boldly claim it.  It reminds me of a song that currently resides in my head, the same lines repeating over and over:

Time stands still
beauty in all she is
I will be brave
I will not let anything
Take away
What's standing in front of me
Every breath
Every hour has come to this

One step closer

I have died everyday
waiting for you
Darlin' don't be afraid
I have loved you for a
Thousand years
I'll love you for a
Thousand more

I don't know if this song was written for two people in love, but how I hear it is a word from our loving Father who has indeed inspired me to continue to be brave in my beliefs of the precious gift awaiting my darling girl, and I will do so as long as He inspires me.


  1. Kelly,
    What a lovely & inspiring blog. Thank you.

    I would love to know how the gaps diet is going & if it is helping with the seizures, please? My DS is on an anti-inflammatory, antoxidant & building blocks diet (big help & seizures have reduced!) & the next step is going to be the gaps diet! So, hope you don't mind me asking.


  2. Hi Gemma -

    Thank you for commenting! I am seeing a reduction in her seizures, but she still has them. Her journey may be different from others in that she was on a tremendous amount of supplements that were not GAPS compliant. It took me 6 months to get her off of them - she is very hypersensitive to any change. I just recently took her off the last supplement and have just started the goat yogurt. I feel as though we are finally at the point where change could be BIG! Stay tuned!!! p.s. wondering how you found my blog?

  3. I just wanted to let you know that I've really appreciated your blog. I ordered the FCLO tonight- we'll see how that goes. :)
    I'm not stalking you :), but I keep checking back to see if you've posted again. Many of the people I've opened my heart to about the pain of my daughter's ASD diagnosis have been totally unable to understand. It helps to read your honesty about your struggle.

  4. Well....I understand Becky:) I love that you keep checking back! I have 18 'draft' posts to read over and will be posting soon!! Thank you for commenting:) I feel I am meant to share this struggle for moms like you! Your daughter's 'puzzle' as they call it will start piecing together - I just know it!!!

  5. Today has not been the best day with our daughter-she had a bad night of sleep like she used to have all the time before SCD, and our friend who helps her during sunday school at church got upset when we stepped in to offer suggestions. I started thinking of your blog and wondering if you'd posted lately. Not to pressure you (I know you must be busy), but I just wanted to you to know that I think of your blog as a place to find comfort. I hope you have a joyful and hope filled Christmas!

    1. Also, I've been blogging at http://holdingtomorrow.wordpress.com/
      if you want to read more about us, or in case I still seem like a stalker. :)