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, September 19, 2016

Olivia is excited to show what she's been able to do consistently for a while! Just in time for her Golden Birthday - 18!!

Never once, had it occurred to me as I laid my eyes on my golden-haired blue eyed baby girl, that I would be changing her diaper and helping her out of her "crib" on the morning of her 18th birthday. She was perfect.

All morning I have oscillated between scores of emotions as I consider that she is now a young adult. Gone are her childhood years. Over. Never will she take part in the things of childhood that each and every mother swoons over as her little cherub's age. I think it may be harder because she did develop normally until 2. I got to witness her emerging personality. The silliness, the stubbornness and of course her sweet soft voice. She was incredibly smart. I remember once when she was 7-months old and we were in the kitchen. I asked her "Where's your nuky?" She immediately worked her way out of my arms and crawled to the other side of the house to her room. Once in her room, she crawled under her crib and came out from under with her nuk in her mouth! Smiling ear to ear. So proud of herself! I was amazed!!

Thankfully I was able to witness the sweetness of her as a toddler, but then she was gone. It's hard to not mourn that she was now a shell. She had withdrawn into a sea of neurological mayhem. Silent and suffering with daily seizures.

I completely missed out on the innocence of a 4-year old learning the first shreds of independence, silent to toddler church favorites like "Jesus Loves Me".  Fabricated memories are all I have of her turning 6.......imagining her to be wide-eyed with excitement over her first tooth fairy visit or the belief in Santa and his reindeers and elves. I'll never forget that first Christmas as Marty and I lay next to each other, completely numb.....completely silent as the tears streamed down our faces in the dark of the night.

No longer can I think about the hilarity and confusion of being a tween girl and the coming of age as a teenager, with each and every milestone on the way. The first crush. Confirmation. The driver's license. First dance. Prom. Graduation. It's over and there is no getting it back for her. There is immense emotional loss when you lose your child to Autism and neurological disfunction.

But here's the good news. We're on a different path. A straightened one. One that honors faith instead of long hours of labor. Wisdom has spoken and several new pieces of Olivia's puzzle have been revealed.....as promised.

I refuse to mourn her lost childhood years any longer because the hope that resides in me now fuels my passion for the new milestones Olivia will conquer. For those who follow my blog...... remember my last post? I dived in head first to discover the Will of God on healing. With that information I started taking different steps; seeking wisdom from other experts.

And this is where the healing begins. Remember the story of the three lame men that Jesus and his disciples healed in the bible? Here's a refresher:

Jesus Heals a Lame Man
Afterward Jesus returned to Jerusalem for one of the Jewish holy days. Inside the city, near the Sheep Gate, was the pool of Bethesda,[a] with five covered porches. Crowds of sick people—blind, lame, or paralyzed—lay on the porches. One of the men lying there had been sick for thirty-eight years. When Jesus saw him and knew he had been ill for a long time, he asked him, “Would you like to get well?” “I can’t, sir,” the sick man said, “for I have no one to put me into the pool when the water bubbles up. Someone else always gets there ahead of me.” Jesus told him, “Stand up, pick up your mat, and walk!” Instantly, the man was healed! He rolled up his sleeping mat and began walking! John 5:1-9

A Lame Man Healed
Now Peter and John went up together to the temple at the hour of prayer, the ninth hour. And a certain man lame from his mother’s womb was carried, whom they laid daily at the gate of the temple which is called Beautiful, to ask alms from those who entered the temple; who, seeing Peter and John about to go into the temple, asked for alms. And fixing his eyes on him, with John, Peter said, “Look at us.” So he gave them his attention, expecting to receive something from them. Then Peter said, “Silver and gold I do not have, but what I do have I give you: In the name of Jesus Christ of Nazareth, rise up and walk.” And he took him by the right hand and lifted him up, and immediately his feet and ankle bones received strength. So he, leaping up, stood and walked and entered the temple with them—walking, leaping, and praising God. And all the people saw him walking and praising God. Then they knew that it was he who sat begging alms at the Beautiful Gate of the temple; and they were filled with wonder and amazement at what had happened to him. Acts 3:2-10

Jesus Heals a Paralyzed Man
When Jesus returned to Capernaum several days later, the news spread quickly that he was back home. Soon the house where he was staying was so packed with visitors that there was no more room, even outside the door. While he was preaching God’s word to them, four men arrived carrying a paralyzed man on a mat. They couldn’t bring him to Jesus because of the crowd, so they dug a hole through the roof above his head. Then they lowered the man on his mat, right down in front of Jesus. Seeing their faith, Jesus said to the paralyzed man, “My child, your sins are forgiven.”But some of the teachers of religious law who were sitting there thought to themselves, “What is he saying? This is blasphemy! Only God can forgive sins!”

Jesus knew immediately what they were thinking, so he asked them, “Why do you question this in your hearts? Is it easier to say to the paralyzed man ‘Your sins are forgiven,’ or ‘Stand up, pick up your mat, and walk’? So I will prove to you that the Son of Man[a] has the authority on earth to forgive sins.” Then Jesus turned to the paralyzed man and said, “Stand up, pick up your mat, and go home!” And the man jumped up, grabbed his mat, and walked out through the stunned onlookers. They were all amazed and praised God, exclaiming, “We’ve never seen anything like this before!” Mark 2:1-12

And, of course, my absolute favorite:

When Jesus saw that a crowd was running to the scene, he rebuked the impure spirit. “You deaf and mute spirit,” he said, “I command you, come out of him and never enter him again.”The spirit shrieked, convulsed him violently and came out. The boy looked so much like a corpse that many said, “He’s dead.” But Jesus took him by the hand and lifted him to his feet, and he stood upAfter Jesus had gone indoors, his disciples asked him privately, “Why couldn’t we drive it out?”He replied, “This kind can come out only by prayer. Mark 9:25-29

Stand up Olivia, and leave that chair!

Her strength and endurance has gained momentum over the last several weeks. As of this writing she still needs the chair for safety, but my hope is that it will soon be parked in the corner and some day out the door! This video was taken on her birthday (yesterday), and she was walking in the back yard for about an hour. She just loved her new found freedom!! To be honest, she still has some bad days with seizures but they seem to be getting fewer and far between.

Faithful readers! God is Faithful. Even to those of us that have been waiting for years and years. Remember this post from September 21, 2015? Olivia had been in the hospital for 10 days and I was completely worn!

Just one year later and I am finally on the right path! It reminds me of the Beth Moore Deuteronomy study I did in 2013.  One of the main goals in her series was to help people "regain their vision", or in my case - "discover her puzzle pieces", what went wrong and what are the pieces I need to get her on the road to health again? I've seen a lot of smart doctors (both conventional and alternative) and they haven't been able to figure it out. Beth shows the word "See" being used 29 times in the book of Deuteronomy. He wants to point us in the right direction.

"See, I have set the land before you. Go in and take possession of the land that the LORD swore to your fathers, to Abraham, to Isaac, and to Jacob, to give to them and to their offspring after them." Deuteronomy 1:8

He humbles me. His willingness to hold on tight encourages me. He has never given up on me and my fight for her. The true revelation He has for me comes as I watch Tenth Avenue North "Worn" video one more time.

As my eyes are glued to the screen, and I am belting out the memorized lyrics, He grants me the vision of a lifetime ----  the green leaves, which previously were brown, as they float upward toward the branches turn into puzzle pieces. As they rise, they are Meticulously joined together. He grants me the sweet vision of running toward the base of the tree where He is waiting. In no time flat, I am in His amazing strong arm as He points up to the puzzle pieces in flight, as they move to be joined. I look down his arm, to the end of His index finger and there is the tapestry of Olivia's life as a completed puzzle. This time, with my soul quieted, I am able to hear Him whisper, "See......See".

Friday, August 26, 2016

Update on Olivia

Hey.  :)

Again, it's been a while. My summer is screaming by (like everyone else) and between necessary house projects and activities for my two other children, my thoughts on Olivia's "summer of weaning" have been swimming around and around in my head, just itching to get out and find their way to you. We had a little bump in the road early in the weaning schedule. As easy as it sounds, it always becomes complex and difficult.

As mentioned in a previous post, we met with a Pharmacogenetics doctor and he performed a couple new blood tests that revealed that Olivia lacks the enzymes necessary to break down the Keppra properly (remember.....I have been saying she can't handle it for years). In a nut shell, because she lacks those enzymes, over time she becomes toxic on the medication and it starts causing problems (in her case, more seizures and a host of other serious side effects). The natural response to this is to just get her off the drug, but going too fast has also caused problems due to her hypersensitivity to change. Believe me, if I could just stop it right now --- today --- I would love to but it's just too abrupt for her sensitive.....complex......fragile nervous system. So, for the time being she will be on some of it until we get her completely weaned off.

Thought I would share a picture of a tile I made with Lauren during Olivia's stay at Children's Hospital this past May. Over the last several years, Lauren's company during long hospital stays has been a much needed respite from the stressful, long days of unsuccessful seizure control. On this particular day, we walked down to the sibling play area for some distraction. Immediately upon arrival, I laid down on a comfy couch as she sat down to participate in the day's art project. But soon, the begging and pleading for me to participate took hold and I found myself digging through jar after jar of fun, colorful accents to glue to the blank tile that was laying out in front of me.

Tired from late night wakings --- I just kind of winged it.  As I glance at it today, I realize the symbolism that screams from the artwork I created on that stormy day in May. It conveys the message of our story and my writing on this recovery blog. How is it that I've been able to cultivate this crazy ability to believe in an impossible looking dream?

I feel compelled to inspire you to believe in the miracle of healing, rather than in just instantaneous "miracles". I see my heart, once broken and submerged for over a decade in the deep, dark, murky waters of unrelentless chronic illness; finding it's way to the surface where the light is. At the surface, finally able to see true transformation -  like the butterfly emerging from it's chrysalis to find it's new life and much needed freedom.

I know what you may be thinking - it all sounds well and good....even inspirational, but when is it going to start happening? You know - the transformation I've been believing for. I can write about faith, belief and healing until the cows come home but when will it start to materialize? 

I kind of set you up in the beginning -- right? I told you that by following our journey you could be witness to a healing miracle.....although I did warn you that it may take some time.  I kind of look like a failure. No one wants to look like a fool. Believing in the unseen has it's side effects. I mean, yes, we have seen a hint of it. Like a pinch here, a dash there, but nothing sustainable. A couple weeks/month of no seizures and walking on her own and then a tough patch - ugh. Medicinal Cannabis is an amazing start, but I want more. Am I being unreasonable? Is acceptance of her life of suffering more reasonable? More accepted?

Remember this scripture? "Hope deferred makes the heart sick, but a dream fulfilled is a tree of life." Proverbs 13:12  ---- things can appear deferred.

Does God always want to heal? Is it God's will to heal everyone? Is it His will to heal Olivia? Those are good questions! Gosh dang it! I needed to educate myself on this subject matter because many I have talked with about believing for this healing have asked me if I know if it's God's will. "Why wouldn't it be?", was my immediate, knee jerk reaction. I realize it's been a long time (16 years) and it looks impossible, but can't God make everything possible? Am I too naive? Is my thinking too childlike (wait a second, that's the kind of thinking we need for faith - right)?

This summer I picked a book off my bookshelf that has been sitting there for about 8 years. "Christ the Healer" by F.F Bosworth. A friend gave it to me and I always had the intention of reading it - and I tried, on several occasions. It was written in 1924 and for some reason each time I cracked it open I became distracted and it was soon repositioned on the bookcase during a bi-weekly clearing off of my bedside table.

But now, I am serious. Serious about learning about God's will on healing --- and these are a couple highlights that stuck with me (remember.....I am not a pastor, or a theologian. I'm just a Momma seeking wisdom for the healing of my girl. Seeking. Knocking. Waiting. Wanting to tap into His Ways):

  • God's word is the seed. Until the person seeking healing is sure from God's word that it is God's will to heal him, he is trying to reap a harvest where there is no seed planted. It would be impossible for a farmer to have faith for a harvest before he was sure the seed had been planted. 'He sent His Word: it healed them' (Psalm 107:20) The farmer does not dig up the seed, he trusts the seed will do it's work.
  • While on earth Jesus healed them all, not just some. See Luke 4:40, Matthew 4:23-25, Matthew 9:35-36., Matthew 8:16-17, Acts 10:38...I could go on and on. My favorite, however, is Mark 9:14-29 about the epileptic boy whom the disciples could not heal, but Jesus did. I love what Mr. Bosworth says about this scripture I've referred to over and over in my writing. He says, "By healing the epileptic (Mark 9:14-29) Jesus proved it to be the Father's will to heal even this one whom the disciples, divinely commissioned to cast out demons failed to deliver. We see by this verse that it would have been wrong to call in question and to teach God's unwillingness to heal because of this failure on the part of the disciples. Jesus, by healing shows them that the failure proved nothing but unbelief."
  • Some think healing only referred to his earthly ministry but the bible clearly teaches that He only began to do and teach....and heal...He continues through the Holy Spirit. "I tell you the truth, anyone who believes in me will do the same works I have done, and even greater works, because I am going to be with the Father." (John 14:12)

The bible speaks of expectations. Expectations of healing, expectations that become solid after truly believing; but the world only educates on acceptance --- on complacency, or contentment. Those who choose to believe that Jesus' healing days are limited to bible times most often refer to Paul's "Thorn In the Flesh" scripture:

And lest I should be exalted above measure by the abundance of the revelations, a thorn in the flesh was given to me, a messenger of Satan to buffet me, lest I be exalted above measure. Concerning this thing I pleaded with the Lord three times that it might depart from me.  And He said to me, “My grace is sufficient for you, for My strength is made perfect in weakness.” Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me. Therefore I take pleasure in infirmities, in reproaches, in needs, in persecutions, in distresses, for Christ’s sake. For when I am weak, then I am strong.  2 Corinthians 12:7-10 New King James Version (NKJV)

Paul asked God to remove his thorn and God said "No" ---- three times --- non the less. Those who believe this line of thinking against the ministry of divine healing ---- against the possibility of miracles --- are of the opinion that "God is the author of disease, and that He has chosen some of the most devout of His children to remain sick and glorify Him by exhibiting fortitude and patience." Did God strike Paul, one of His most humble servants with a sickness and then refuse to heal him? Is the very idea of healing not applicable for our day?

Mr. Bosworth's intense study of the word reveals that in all the instances the word "thorn" is used in the bible, sickness is not the intended meaning. In one, it referred to the Canaanites, for David it was the son's of Belial and for Paul it was the messenger of Satan. Always a person -- never a disease. This phrase really had me thinking ----- "a messenger of Satan to buffet me".

Buffeting. The definition is confirming. Who can't relate to the feeling of being buffeted?

Definition - To strike against or push repeatedly. the action of striking someone or something repeatedly and violently. knock (someone) over or off course.

To strike against forcefully and especially repeatedly; batter: winds that buffeted the tent.
To cause repeated difficulty or harm to (a person or group).
To force one's way with difficulty: a ship buffeting against the wind.
(Of misfortunes or difficulties) afflict or harm (someone) repeatedly over a long period.


That's it! This explains so much, because how in the world could I be so unlucky...so wrong....so, um fooled. God's will is for Olivia to be healed, but who do I listen to? Unfortunately, for the last 16 years I have chosen to listen to experts who fully admit they do not understand why Olivia is having seizures and why a medication does not work. Her neurologist just confirmed this again at her last appointment. Over a million people live with uncontrolled seizures, and that is just the United States. Why on earth did I continue to listen when time after time, year after year the answer's were just as wrong as they were on day one? I chose to rely on them, even when they have no idea what caused her to disappear behind those beautiful blue eyes.

Several months ago I had one of the most vivid dreams I have had in a very long time. I was dropping my younger daughter (Lauren Faith) off at an ice skating party with friends. As I looked down at her sitting to my left, she was lacing up her skates. In a moments notice, I glanced to the right and the rink had transformed into a huge bay of water with rolling hills surrounding it with thousands of people sitting together talking. Soon, I too was sitting amongst the masses and all of a sudden a huge "Loch Ness type" monster surfaced in the water and instantly locked eyes with me. Before I knew it, his enormous, long neck made its way toward me as Lauren (faith) clung to me.

It was obvious I was his target, and as his huge head came barreling towards me. I stood my ground - but he like, nudged me. Soon, I realized that although intimidating, all this big monster could do to me was this weird nudging thing. He took his nose and came up to me and nudged (buffeted?) me over and over. I felt as though I was in a movie, falling over, holding onto Lauren as he pushed and prodded me across the hill until I finally woke up. It wasn't until I read Mr. Bosworth's book that I realized this was buffeting, and that I have been buffeted for 16 long years.

Buffeting for me (and Olivia) has included......medication failures........broken bones due to falls from seizures....relationship difficulties......wrong decisions........choosing wrong doctors/practitioners....decisions based on fear.....decisions based on untruths and guesses

It's clear that these things were allowed, but somehow I can rest knowing that with God's help, I chose to become stronger through each one of these "distresses and persecutions". It's incredible to pull these pieces together and realize that I am stronger because of the constant nudging and it reinforces my interpretation of this dream that all he could do was nudge me. He could not take me out or destroy me.  I'm just too fierce for that.

So, that got me thinking. I'm only fierce because of Him ---- Paul said it, right? "For when I am weak, then I am strong".  Did He allow that junk or did I choose it in some weird way because of the choices I made for Olivia's health.....the advice I took from people I trusted, who ended up being wrong....dead wrong on how to build a healthy immune system.

Just like the Israelites, I never questioned my influencers. I blindly trusted them over what God was clearly saying and I wasn't listening because my eyes were focused on them, not Him. Their diagnosis. Their prognosis. Their belief to try the tools from their toolbox over and over again.

God enables me to be fierce for Olivia, because His love for her is for good. Like the song Fierce by Jesus Culture teaches.  "He wants to answer, He's relentless in pursuit, He rushes in to meet us wherever we are. How could we be lost when He has called us found?" His Love is fierce, and at the end of the day, we all know that it takes someone strong to make someone strong (Proctor and Gamble Mother's Day campaign slogan).

It is not God's fault when the physical healing doesn't come. It's man's. It's a hard realization. A friend of mine sent me this comment about God's will in healing from Bill Johnson at Bethel Church, California.

"When we submit the things of God to the mind of man, unbelief and religion are the results. When we submit the mind of man to the things of God, we end up with a renewed mind that enhances a life of faith. The mind makes a wonderful servant but a terrible master."

I made choices presented to me from the influencers I chose to have in my life. Choices have consequences that unfortunately need to be played out. I feel it's not a coincidence that I am writing on this subject while weaning her off the Keppra. Things are tough right now. Weaning off anything is difficult with Olivia because she is so hypersensitive to change. I would call it "Metabolic Mayhem". It's also not a coincidence that my beautiful sister sent me this quote along with a birthday wish last week:

I will begin putting the things I learned in my study of God's will into practice. A big one for me is to stop focusing on her symptoms. Each and every one of those darn seizures are meticulously recorded and fretted over. Renewing of my mind is crucial and shying away from observing those "lying vanities" (symptoms) as Jonah did while lying in the belly of a fish. (Jonah 2:8) I want to be fierce. I want to do as much as I can to align my situation with God's will. I can confidently say Thy Will Be Done Lord.

Sunday, July 3, 2016

Surviving Yet Another Detour to our Promised Land - Keppra drug reaction and weaning.

Are you as upset as I am? Dang it, she was doing so well and then we get thrown off track again. Another detour on our trek to the Promised Land of healing.

Do I sense a snicker? Ha! Yes, despite the long road and the constant "wandering" off course, I still believe she can fully recover. I know ---- for some its painful to witness such faith. I have plenty of people in my life whose body language screams uncomfortableness as I "cling" to something that is an impossibility in their mind. But that's the point. God gives us all faith to believe in the work he's doing in our own lives -- He doesn't necessarily give it to those outside of it. Not to get too offtrack, but what do you think the scene was for Abraham as he met his friends at the watering hole 16 years after his original announcement that he would be a father in his elder years?  Did they snicker and whisper to each other as he walked away? I'm sure they thought he had developed some sort of dementia!

I know my story isn't like Abraham's, the grandeur of his promise is too great for words - and my journey. I am just a momma......Standing in front of my God.......Looking for direction on how to heal my girl. I am willing to walk this out with you and share my journey, even if it doesn't make sense. Believe me --- I know it may look impossible. That's why God is in the drivers seat, and this time I cannot skooch him over when the need to control the situation overwhelms me. Trying to control, and actually thinking that I could reminds me of Natalie Grant's incredible song King of the World.

"I tried to fit you in the walls inside my mind, I try to keep you safely in between the lines, I try to put you in the box that I've designed, I try to pull you down so we are eye to eye

When did I forget that you've always been the king of the world?
I try to take life back right out of the hands of the king of the world
How could I make you so small
When you're the one who holds it all

Just a whisper of your voice can tame the seas
So who am I to try to take the lead
Still I run ahead and think I'm strong enough
When you're the one who made me from the dust

This kind of faith is almost childlike - right? Jesus said we need it (Matthew 18:2) and David had it when he defeated Goliath (1Samual 17:37). I was reminded of this "childlike faith" truth while listening to the "Grow Up" sermon series from Hosanna! church. God certainly wants to "grow us up". He wants strong, spiritually mature believers that retain faith that is similar to a child's trust.

My faith has drawn momentum from devotionals like this one from Streams of the Desert':

The "all things" do not always come simply for the asking, for the reason that God is ever seeking to teach us the way of faith, and in our training in the faith life there must be room for the trial of faith, the discipline of faith, the patience of faith, the courage of faith, and often many stages are passed before we really realize what is the end of faith, namely, the victory of faith.

Real moral fibre is developed through discipline of faith. You have made your request of God, but the answer does not come. What are you to do? Keep on believing God's Word; never be moved away from it by what you see or feel, and thus as you stand steady, enlarged power and experience is being developed. The fact of looking at the apparent contradiction as to God's Word and being unmoved from your position of faith make you stronger on every other line. Often God delays purposely, and the delay is just as much an answer to your prayer as is the fulfillment when it comes.

In the lives of all the great Bible characters, God worked this. Abraham, Moses and Elijah were not great in the beginning, but were made great through the discipline of their faith, and only thus were they fitted for the positions to which God had called them. For example, in the case of Joseph whom the Lord was training for the throne of Egypt, we read in the Psalms:

"The word of the Lord tried him." It was not the prison life with its hard beds or poor food that tried him, but it was the word God had spoken into his heart in the early years concerning elevation and honor which were greater than his brethren were to receive; it was this which was ever before him, when every step in his career made it seem more and more impossible of fulfillment, until he was there imprisoned, and all in innocence, while others who were perhaps justly incarcerated, were released, and he was left to languish alone. These were hours that tried his soul, but hours of spiritual growth and development, that, "when his word came" (the word of release), found him fitted for the delicate task of dealing with his wayward brethren, with a love and patience only surpassed by God Himself. No amount of persecution tries like such experiences as these. When God has spoken of His purpose to do, and yet the days go on and He does not do it, that is truly hard; but it is a discipline of faith that will bring us into a knowledge of God which would otherwise be impossible.

I've done several bible studies on the Israelites Wilderness/Promise Land journey and with each one I gain a deeper understanding of just how similar my modern day trek (16 years) is to the 40 year one detailed in the bible. Like them, I have been frustrated, grumbled, complained, struggled with humility, misunderstood His leading and regrettably let fear control my decision making.

Photo credit: Priscilla Shirer/Lifeway Press

I no longer get bogged down in the "whys" of God's choice for Olivia's life, just as the Israelites had to accept that God chose the wilderness for his "chosen". They could see it as they camped that first night in Etham. I, on the other hand, was blindsided as my perfect baby girl developed "complex" symptoms no doctor could explain, and then detour after detour as attempts were made to straighten her path.

The detours. Ugh! Some days I wonder how we can be so unlucky, when each treatment begins with promise only to end with a downward spiral as my mind would scream, "Why do you hate me so much?" Abiding in Him is the key to my promise land. If I am abiding in Him, then the darkness of fear, doubt, hopelessness and worldly (i.e. logical) thinking of impossibility cannot detour me. Again, sounds easy to do when opposition isn't running rampant, blowing the pieces of her complex puzzle here and there.

How do I continue to believe that God is leading me despite not having a visible "pillar of cloud by day and a pillar of fire by night (Exodus 13:21-22), as the Israelites did? By developing a personal relationship with Jesus, which ends up being a journey itself. Believing, faith, trust - so easy to type the words out, but to actually wholeheartedly adept the qualities of these words can be a long journey. At least for me it was.

Currently, I am weaning Olivia off the Keppra and it has gone smoother than I imagined, but she is still having some tough dips as each change is made. I struggle with the constant need to badger myself for allowing her to be put back on this dang drug - especially with the months of weaning in our future.  Wasn't it Albert Einstein who said "The definition of insanity is doing the same thing over and over and expecting different results". So. True. No wonder I feel on edge when talking with Neurologists about the next drug to try. Insanity.

But....as she comes down the original miraculous effects of the Medicinal Cannabis are resurfacing. The walking unassisted. Improved sleep and eating. 95% reduction in seizure activity. Calm. Peace. And more of this:

Smiles. Engaging....similar to a new born baby recognizing you for the first time. Fresh beginnings. Hope renewed. I could go on and on about her good days.

The more I study the Israelites path, the more I can relate, and it extends past their year long camping trip at the base of Mount Sinai where God pulled them close to solidify His covenant with them. We all know they wandered for 40 years, but as I dove into the details a bit further, I learned that 38 of those years were spent circling a city just to the south of Canaan called Kadesh-barnea - right on the edge of their Promised Land. They sent in 12 spies, they came back with a detailed description of how fruitful the land was, but all but 2 gave a bad report of the strong and powerful tribes that lived there. They were afraid and they chose to stay put.

Priscilla Shirer's "One In A Million" study and other commentators talk about these "spies" in a little more detail. Each tribe chose one leader --- 12 tribes = 12 spies. What's interesting is that these chosen "influencers" were the smart ones, everyone looked up to them and valued their opinion - they were the decision makers. And they were wrong. They were afraid and did not believe that God would do what He said He would do and they influenced nearly 2 million people to not believe for God's promise. Only 2 of the original two million Israelites made the trip to the Promised Land - Joshua & Caleb - the 2 spies that believed God, the rest died in the Wilderness, never receiving the bounty God had planned for them.

It made me think about the "influencers" in my own life, and in our situation. For 16 years I have taken Olivia to doctor after doctor, specialist after specialist, expert after expert and they all have been wrong. I've been circling around the same old information, trying the same set of drugs and/or supplements and have been stuck just outside her Promised Land of healing. I remember when I first heard of Charlotte Figi - the little girl with uncontrolled seizures in Colorado whose seizures miraculously stopped with Medicinal Cannabis, I was filled with a renewed hope. I talked with her Neurologist about possibly moving out there to give it a try, but she didn't believe it would help her ---- and she influenced me and I chose to stay put. And that was that. I believed the doctors negative report over the passion and belief God was working in me that she could in fact recover. My influencers tore down my hope and I wallowed for years in my own little Kadesh-barnea, just outside God's abundant fullness of health.

I have new "influencers" now......new experts to listen to and as we work through weaning issues and optimal dosages for the miraculous "new drug" called Medicinal Cannabis, I can officially kiss my Kadesh-barnea goodbye (and good riddance) and finally begin my walk toward the Jordan. Natalie Grant sings about how we put God in a box that we've designed, but in reality we all have people and "experts" in our lives that contribute to the box and actually help press down the packing tape. I just want to stop feeling foolish. Feeling foolish over decisions that at the end of the day were made "under the influence". I'm sure we have all experienced these regrets, but as I look into the eyes of my blue eyed beauty I can't help but cry myself to sleep because of the pain she has been in for her entire childhood.

I want her to be the One in A Million - and so does God!

"There are two ways to be fooled. One is to believe what isn't true; the other is to refuse to believe what is true". Soren Kierkegaard

Next on my list of study is........I definitely have the faith, but is it God's will to heal her? This is actually a question that a couple pastors I have talked with have asked --- hmmmm. That blog post coming up next.


Friday, June 10, 2016

Thank You for the Prayers - Olivia is home from the hospital!

I ran into my cousin today at a memorial service for our great aunt Verona and she asked me for an update on Olivia. I realized I left you hanging ----- I am so sorry I have not updated you sooner. After our 10 day stay, we arrived home just before Memorial Day Weekend. In between catching up from being gone and my younger daughter slamming her thumb in the car door (2 hour ER visit)---- and of course the last week of school ----- I haven't had a chance to sit down and write. The good news is  ----- she caught the last week of school (not happy to have her picture taken though):

Although we are still in recovery mode. I was excited to meet with a new type of specialist --- a Genetics Doctor who specializes in Pharmacogenetic testing. He explained to me that Olivia probably lacks the enzymes necessary to breakdown the Keppra medication properly. This makes complete sense in her case. Instead of reacting to the medication negatively immediately, it took several months for the toxic effects to build --- little by little everyday.

In the hospital they decreased the Keppra by a large amount and after adjusting to this major change she has stabilized and is gaining more and more strength everyday. Each week, I have been instructed to decrease the Keppra until she is completely weaned off. 

I am SO thankful for the Medicinal Cannabis! It has been keeping her stable and we are back to the seizure-free weeks --- the only time she has had one (just one!!!) was 3-5 days after I decreased the medication. For now, we are not putting her on another medication (against the neurologists advice), but in our opinion, medications typically cause more problems then benefits for her. We would like to see how she fares with the Medicinal Cannabis on it's own.

In other news, we have received the results from the metabolic testing and everything has been coming out normal. Our next step would be a Whole Exome Sequencing which I believe looks at 32,000 genes. 

I have so much more to say! I have been working on a separate post. I am grateful for you and your prayers. They mean the world to me!


Friday, May 20, 2016

Side Effects Can Be Brutal

Our address has temporarily changed. Personally, I haven't missed the St. Paul Children's neighborhood from the last sleepover, but we had to check in. Don't get me wrong --- I've appreciated St. Paul Children's the few times I've had to camp overnight since switching to their beautiful Neuroscience floor, I just don't like the reason for having to relocate there. No one would. Olivia has been struggling for about a month now ---- sick one week, a little better the next, but then she began to spiral down until there was no other option than to take a ride North.

Prior to this bump in the road, she had almost three seizure free weeks. Now that is heaven!

But seriously, the issue at hand is the side effects from the medication she was on (and still on) prior to starting the Medical Cannabis. Here is the frustrating part - even though this medication (Keppra) has never been a star performer in the seizure arena for Olivia, we were somewhat coerced to keep her on it because it made others feel good.

It's no secret that Keppra side effects can be brutal, just ask any parent who has had a negative encounter with it. Olivia's a case in point. We were first introduced to it when she was 9. She broke her femur during a seizure and the stress of that break sent her into a tailspin. The first month seemed fine, but then we started noticing things that just weren't her --- the aggressiveness, holding her urine for 15 hours - oh and I can't forget her walking around hitting her arms and legs with her fists and stomping her feet -- all day long. It wasn't until we were in month 5 and she was having hour long rage sessions every single day and she would sit down and hit her self for hours on end, that this drug became a huge problem......Rage......painful urination.....pins and needles in extremities......those pesky little side effects that are in the fine print, holding my beauty hostage as she likely felt as though she was losing her mind.  Did I mention she was still having seizures? Two months of weaning and the unwelcomed behaviors faded away as the drug left her system.

Fast forward to 2014----Her seizures again are somewhat out of control (sadly I've seen worse). Our only option according to the hospital staff during discharge - Keppra. Wait a second!! What about the side effects I just explained in depth to vacant eyes and wandering minds? Standing in that room with 5 experts in white coats with what seems to be in their opinion no other option. Do they think I made up the side effects when she was on it at nine? Apparently so.....the pressure was too intense and I caved and put her on it. It reminds me of a clip in the kid's movie "Matilda". Harry Wormwood showing his dominance over his daughter Matilda  I felt like these doctor's were saying to me: "Listen, you little wiseacre: I'm smart, you're dumb; I'm big, you're little; I'm right, you're wrong, and there's nothing you can do about it."

This is just a reality in the uncontrolled seizure medication world. A negative reaction to a drug generally means (or should mean) that it cannot be tolerated ---- ever. But the retrying......recycling....looking for a better outcome is always attempted, and most often fails (in my experience anyway). I can now look back and see that her terrible year from late 2014-2015 was further compromised by this medication. The side effects may display differently but the writing was always on the wall. In her weakened state she no longer had the fight in her to be aggressive, instead the weakness, the nausea, the inability to walk overtook her. At this average dose for her age/weight it just created general malaise (in addition to the effects above) but thinking about taking her off or trying to switch to another drug (with odds it would also not work) was daunting.

But then, in walks Medicinal Cannabis and recovery started to look possible. Within weeks of introducing it she started walking again, even at a sub-therapeutic dose. As the months go by on the Keppra, she begins catching more infections, causing bad weeks and continued struggles and gosh darn it I fall for it again. The insecurity creeps in, the fear takes hold and I agree to increase this drug despite my gut screaming at me to stop the madness.....to get another opinion.....but instead I force myself to believe these experts ---lie to myself that it would work positively with the Cannabis. The Cannabis is a miracle for her, but its unreasonable to assume that the Cannabis can stop side effects caused by a medication. Regrettably, history repeats itself.

Why do I do it? Why do I consistently cave in to pressure when I know in my heart it is not good?Why do some prescribing doctors believe that side effects do not happen? Logic is stifled when solutions only involve introducing another drug instead of taking away the offending one. Logic screams truth in that the only way to get rid of the side effects is to get rid of the drug. Olivia's individual history has shown that the first month or so on any of the medications we have tried seems promising, only to find out 4 or 5 months later that it is not tolerated. My mommy instinct knew this several months ago, but the worldly confusion spoke otherwise. Why in the world would a mother fighting for a better life for her daughter make something like this up? I would do anything for a medicine to work --- it just has never been in the cards for Olivia.

Yesterday, the Neurologist I met with spoke so much truth. He reminded me that if three separate AED drugs are tried and there is no measurable control of the seizures the odds of finding one that works is next to nil.

So, here we are, 5 months after the increase and the side effects are front and center and she needs to come off. Weaning seizure medications is never easy. Oh my heart. It's going to be a long couple months and I would so appreciate your prayers.

Here's a video taken in April when she was doing really well. Practicing sitting in real chairs, not her wheel chair.

I am faithfully trying to "run with perseverance the race God has marked out for us". Hebrews 12:1
Even when these hurdles are thrown my way....some much taller than my petite little legs, I trust that God is going before me. Fighting for His loves and creating a path for His will for Olivia's life.

Thank You So Much For The Prayers - I will keep you updated.


Sunday, April 17, 2016


Prayers needed. Olivia is struggling with a virus that is holding on a bit too long. She is extremely weak again, we haven't seen this weakness since starting the Leafline Cobalt Medicinal Cannabis medicine. Seizure threshold's take a beating when illness comes on the scene.

I have to confess....I did not come up with the "NOT THIS" tag line. This week I read a post on Elizabeth Gilbert's (whom I really admire) facebook page entitled NOT THIS. To summarize, she eloquently lists several life situations that are bad or hard and appropriately labels them "NOT THIS". She then goes on to give examples of courageous woman who have looked at their life situation.....living a life they never would have chosen and subsequently think "NOT THIS". Many of her friends and readers went on to make hard but necessary decisions to change their lives, whether they had a "Plan B" or not.

So powerful for so many; yet as I read her words, I started to feel empty and kind of stuck, kind of powerless. Although I spoke about reality checks in my previous post, after reading her piece I had to mentally do one. What I realized was that this courageous written work simply does not apply to me. It does not apply to life with a chronically ill child, and maybe others may relate. Plan B does not exist....you just do the hard....you face the uncomfortableness....you watch the suffering because you have no other choice. Plan G(od) soon becomes your only option, unless, of course, your Plan B provides a necessary escape route......a route that can be sketched in several modalities...physically, emotionally, or mentally to another place.

Currently I am painting the interior walls in my home ---- by myself. It has been about 10 years since the original dark colored paint has been applied and like anything that is 10 years old it has changed....it has darkened in some places, lightened in others, and drastically mutated from the original solid choice to a hue that has become so unattractive ---- kind of like my life the last four years watching Olivia's downward spiral.

I was already on the "Plan G" path but life has a way of hastening important decisions, especially when you are desperate. Now, with things beginning to stabilize a bit its time to freshen up the paint (both in my house and in my heart). This process starts with finding some sort of color you like, what feels right, what now represents the new(?) you. The warrior. The overcomer. The survivor.

Elizabeth Gilbert is an author I enjoy reading. Strength pours out of her writing. Honesty. True regard for you as a person, but the color in her "NOT THIS" post just did not fit me. It wasn't enough. She beckons a strength that was null and void deep within me. A strength that was only available as I "died" to it all and laid it down to God. Because that's what we do when we have no other choice. Plan A sucks but it's all we have. Each time we die to those things we think we need, God is developing the character He needs you to have to do what He has for you. The character or foundation (like the foundation of Nehemiah's wall) he develops in those hard places is Truly Strong - so strong that heavier things can be piled on top. Hard times, hard places is where God does his most important teaching. I try and learn His discernment as to what to run from and what situations He may be using me in someone else's life. What I am still learning is that it is not all about me. I've died to so many things, so many times but I know I am stronger in spite of all my broken heartbeats.

The search was on. New colors for my interiors, but also a new color for my heart -- for my raggedy soul. This is what I found. Each and every time I would get a color sample I loved, I would paint a nice big area on the wall, and each and every time the color would not be like the sample. Over and over I would try and not get the result that I should have gotten. Eventually, I reached out for expert advice from the paint store designer. "Cover the old with white primer". Dah! Why didn't I do that in the first place? Why? Because I didn't want to waste the time to paint the whole room in white - I just wanted to get the color on and be done. Isn't that what we do? Do what meets our selfish needs first and foremost? This life is hard ---- so I can just say NOT THIS. This loved one is in a bad place......NOT THIS. Without this I will be happy. Hmmmm

It wasn't until I covered the walls in white paint, which covered the mutated, darkened colors that I was able to see the new colors for what they were. In her words "the old colors were so dominate the reflections were causing the paint sample to not be as they were intended". While applying the bright white paint I felt as though God whispered sweetly into my ear that this is true also with my heart..my courage..my strength.....my plan.....my belief in "NOT THIS".  I must first cover my 'sins which are like scarlet.....and they shall be as white as snow. Isaiah 1:18.......and then I'll see the true colors for his plan for my life and Olivia's. With the white(Jesus) underneath, the colors will be authentic and perfect.

I wasn't enough, I'm not enough - Power to the She was not my saving grace. Only Jesus. I know this will make some people feel really uncomfortable. We like to admire strong people.....strong woman especially - which from outward appearance that is what I appeared. If I could only make a movie.......you would see.....that I am only human..... I love this work by Christina Perri  Human - Christina Perri how many of us, in this place of chronically ill children or loved ones can say these very words:

I can hold my breath.....I can bite my tongue......I can stay awake for days, If that's what you want
Be your number one......I can fake a smile.....I can force a laugh.....I can dance and play the part
If that's what you ask....Give you all I am.....I can do it....I can do it..I can do it...

But I'm only human....And I bleed when I fall down...I'm only human....And I crash and I break down
Your words in my head, knives in my heart....You build me up and then I fall apart..
'Cause I'm only human,

I can turn it on.....Be a good machine.....I can hold the weight of worlds....If that's what you need
Be your everything....I can do it....I can do it.....I'll get through it

'Cause I'm only human, just a little human....I can take so much, until I've had enough. (Enter Plan G)


We hold our breath, a reaction that is out of our control, as the seizure cycles begin. No matter how many years of watching them, it never gets easier. We bite our tongues because deep down we want to scream at anyone who points out the "blessing" of suffering in our lives. We stay awake for days when our child is sick and in a bad cycle. Of course we fake the smile, fake the laugh because that is what we're asked. And of course we give them all that we have. We turn it on, we become the machine to hold the weight of the world, because that is what they need. There is no Plan B. We are only human and we crash and we break down.

I try and keep my mind on Truth. I frequently ask myself - "What lies are you believing?"

I am hoping that I will have good news of recovery from this illness for my next post. Thank you so much for your powerful prayers.

The beautiful, successful author Elizabeth Gilbert signed her "NOT This" post with ONWARD.

I, on the other hand, humbly point you .........