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.

Tuesday, March 13, 2012

Beth Moore JAMES study letter to Coreene, Laura & Melinda

Oh how I can relate to this study ( JAMES - by Beth Moore) - especially the portion on faith perfected.

Foolish man! Are you willing to learn that faith without works is useless? Wasn't Abraham our father justified by works when he offered Isaac his son on the altar? You see that faith was active together with his works, and by works, faith was perfected. So the Scripture was fulfilled that says, Abraham believed God, and it was credited to him for righteousness, and he was called God's friend. You see that a man is justified by works and not by faith alone. And in the same way, wasn't Rahab the prostitute also justified by works when she received the messengers and sent them out by a different route? For just as the body without the spirit is dead, so also faith without works is dead.
James 2:20-26 (HCSB)

Faith without works is useless.

I can relate to her observation that anyone who is unwilling to learn is an empty headed fool.  She, of course is referring to learning in our spiritual life, whereas I broadened the definition while reading the study material and have applied it to my experience with Olivia. I had to be willing to learn in both the spiritual and physical aspects of her tragedy.  Spiritually I was extremely immature and with Olivia not responding to the treatments outlined by the medical community it was either learn or accept.... and I couldn't accept.  Beth is spot on when she says that "our human tendency is to figure out quickly what we believe.  Then, from that point forward, stick to materials that affirm our early-determined belief system".  Isn't that the medical communities motto? I believe most people may think like this until they are pushed to reevaluate. So many have a belief that the medical community has all the answers to what ails us - I know I did.  But then they uttered those words, "Well, there isn't anything else we can do for your daughter." These words immediately ignited the desire to go outside "the box" and learn what others in the alternative community were saying/doing.

During this study it dawned on me that while I was learning, developing and perfecting my faith in God, as well as in myself, I needed to finally let go and be free of an opinion I have had about myself since early adulthood.  This opinion had been rooted in my consciousness, all from a statement said by my loving mother.  Of course she probably doesn't remember saying it, and for sure never intended it to effect me as much as it has. I have learned throughout the years that the enemy is so skilled at exaggerating, reminding and using words of loved ones against ourselves. When looking into furthering my education with a law degree, and being somewhat insecure about if I could do it, I reached out to my mom, who responded to this inquiry with , "Do you really think you could do that"?  This notion that family members never see the potential in fellow family members is not new - consider James earlier summation of his brother Jesus.  Also consider that Jesus was unable to perform his works in his hometown of Nazareth. Family just doesn't see it. So, as I embarked on learning about what happened to Olivia that question always reared it's ugly head.  "Do you really think you could do that?" In a nut shell, it haunted me, but I still did my part. Believing and learning what went wrong.  I am so thankful for this epiphany!  So long to what could be the root of my insecurity - in Jesus' name!!

In my heart I have always gone back to the "why me?" But now I can say ,"Why not me?" I remember when it first happened to Olivia I did not want to be the mother of a disabled child.  The very thought of having to "put up with" the extra work that was associated with the job was completely harrowing in nature - and believe me I was no hero.  Marty's step-father tried to "shake" it in to me one day when he grabbed hold of my shoulders and shook me, saying "You have to accept that you have a disable child", very sternly.  I looked him straight in the eyes, pulled my hands up to throw his hands off my shoulders and said, "I will NEVER accept it!" and walked out the door. I know now that he was very frustrated by this interruption in our lives and just wanted me to accept it so things could move on.

As Beth introduced us to James 2:21-25 and talked about how James recognizes and notes two Old Testament figures who's faith was perfected by works.

I always questioned why I received such an assignment since I never really "relied" on God until this happened with Olivia.  In my opinion there were so many other people who would have been better qualified. I mean, I am kind of just an average joe - think of my name - Kelly Johnson.  I am sure there are thousands of Kelly Johnson's just in the Minneapolis area alone.  To add to this "averageness", was a inherited feeling of fear in everything I did, and do.  Thinking the worst, even before it happened was my modus operandi! Couple that way off thinking with a tragedy like Olivia's and it should have spelled disaster. But that was not part of the "plan".  Because the "plan" included that I would finally run to and submit myself to God. I was amazed to learn that Rahab, the prostitute who chose to use her faith with the assignment that was only hers, was named in what Beth referred to as the Hebrews 11 Hall of Faith!

This study is so timely for my squeamish self confidence.  I loved learning the little bit about Rahab.  I am showing my bible ignorance here!  This is just what God does for me.  He brings it back to a story about a woman that he used.  Not because she was a great female scholar, or even someone who was following his laws in the beginning - she was probably just an average joe who fell into the prostitution profession due to some hardship.  But as Beth said, "God still called her to faith."  I loved, loved, loved what Beth went on to say:

"God can change what people do.  He can change behavioral patterns that have been in play for decades.  he can change what we do to cope, to find comfort, to survive conflict, to count.  Like me, Rahab had done a same old thing for years.....and then she did something new. She believed God and acted on it."

And that is what I am doing.....I am simply believing God and  acting on it. God knows what will become of this story.

I feel as though Beth was really giving me a warning.  Here I am, poised to finally put my knowledge and experience on paper - to tell the world, and she includes a section on people who are called to teach.  I believe she was really talking about people who will be doing bible studies, but in my life I think it means teaching what I have learned about kids/people with extreme mental illnesses.  As usual, timely information as I get my blog ready for public view.  She warns us about 1) the temptation to teach more than we know, 2) the capacity to mislead, 3)the temptation to use the platform for personal agendas or opinions.  I really don't look at me sharing my story as teaching, but these rules still apply.  I was completely convicted with her final statement as she quoted Romans 12:7 "Let him teach".  To shrink back is disobedience.

Her discussion on James 3:10 was also enlightening to me.  It reads "Praising and cursing come out of the same mouth. My brothers, these things should not be this way".  Beth shows us that we have a choice...the tongue can bring comfort and courage, or it can bring destruction and deafness.  I want to illuminate comfort and courage in my writings. Especially for the young mom who recently lost the soul of her little babe.  I can relate so well to being left with a living, breathing shell that is their physical body.  Checked out.  Gone.

As I moved into Day Five of Week Four I am surprised at just how much of my past, and/or the beginning of this journey has been brought back to my attention.

She talks about bitter envy (or jealousy).  God  is so gracious in that He really shows me just how far I have come in so many area's.  Jealousy used to rule my thoughts after Olivia 'went away" from us.  I remember I was so angry and jealous of anyone that just so happened had a little girl.....especially the same age as Olivia.  I soon began distancing myself from anyone with a little girl.  It would eat me alive.  So, as I learned from Beth that jealousy takes root in insecurity it really made sense to me.

 I love how she says that "Wisdom often knows what to do, what is right, or what is awry.  Understanding often knows why."  Throughout the past 11 years I looked and prayed for wisdom.  I read anything I could about vaccine injured children, what helps, what doesn't.  But until that constant question of "why" was answered I still found my self confused with the "wisdom" of it all.  How does a perfectly normal child become unresponsive, unable to use their voice and begin to fixate on objects in motion?  It is accepted too easily in the medical community.  I often learned and then tried things with Olivia.....diets....supplements and the wisdom just further confused the understanding.  The damaged gut wall.  That is where it began with Olivia, and that is where the understanding ultimately led to a certain end, if you will.  It was also the end of a lack of confidence in the wisdom that I was accumulating throughout the years. In my case it was there all the time.  As I read information about a damaged or "leaky" gut, I just assumed that it must have been healed because of all the supplements I had given her.  I was grossly off target and really didn't understand it until I read the Gut and Psychology Syndrome Book.

This study has certainly dug up some old feelings.  I could relate to the section regarding James 2:16. 'and one of you says to them, "Go in peace, keep warm and eat well, but you do not give them what the body needs, what good is it?" Empty blessings. Beth continues.......They don't have anything, yet we send them off speaking empty blessings.  Oh what a rush of validation swept over me when Beth explained this section. I mean, this kind of treatment happened to me over and over.  People, friends, family would listen to me talk about Olivia for oh so long and then the subject was changed to real life, but my heart was still broken. I could not move on to the next topic of life because it no longer included me. My life had stopped.  Year after year the uncertainty of Olivia's life grew more and more uncertain as her health continued to decline.  In our case, Olivia's chronic worsening condition failed to be the subject at hand in any conversation and the expectation that our lives were "normal" grew year after year.  I think that people just assumed that we had moved on...that we had accepted the drastic change in our lives and we were no longer affected.  This assumption was far from the truth.  We were submerged in a life that was depressing. Period. And who really wanted to know about it? No one. So.....Beth referring to people saying "have a good day ---- blessings to you", in that empty sort of way really hit home for me.

God is so good to me.  This study is really causing me to look back at those old hurts, deal with them and move on.  I know now that many people do not know what to say, and some choose to say words that are harsh because they want you to work through your troubles so they can have the old friend, son, daughter, brother. sister, back.  But what they fail to realize is that the breaking of your heart needs that "dignity of notice" that Beth finished up with.  Instead of people telling me that it must be "God's plan", or "her destiny", or even better yet "just accept you have a handicapped child"; how wonderful if could have been for them to simply say "THIS SUCKS", "Let me pray for her healing", or "I'm sorry this has happened".  You three made this so much better for me. I am forever grateful that you listened, let me cry and talk (non stop ;) ) when we met on those awesome Thursday's at 1:00! I am grateful that you didn't try and "talk me out" of the faith that was developing - even if your brain tried to coax your heart differently.  As I look back to that time, this grace was a requirement for me to make it out of that pit I was in.  There is a reason that I would literally "HOLD ON" until Thursday at 1:00!!  God equipped each of you masterfully to deal with this crazy mom and her sick kid!

Lauren & Her Amazing Godmothers!



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