Olivia's journey has been rough - to say the least. Born perfectly healthy, her declining health has always been called a mystery. Fifteen years have come and gone, with no change to the daily seizures that have held our hearts hostage..... until now. Finding HOPE and healing for our girl began with the introduction of Medicinal Cannabis - A controversial treatment for untreatable seizure disorders.

Her story briefly -

At 18-months she developed little "shaking spells" in the middle of the night. Olivia's journey has been rough - to say the least. Born perfectly healthy, her declining health has always been called a mystery. Fifteen years have come and gone, with no change to the daily seizures that have held our hearts hostage..... until now. Finding HOPE and healing for our girl began with the introduction of Medicinal Cannabis - A controversial treatment for untreatable seizure disorders.The Neurologist called them "Generalized Myoclonic Seizures". In many cases this can be the beginning of a degenerative condition, but month after month Olivia “defied” this inaccurate diagnosis by continuing to develop normally. Several months later, after a medical procedure, the little "shakes" became large jerks that would catapult her to the floor. She stopped talking, stopped responding to our voice and appeared have entered her own little world. The seizures continued to change. They soon became "drop" seizures and would come on with no warning and she would fall or crash into whatever was in front or below her. They continued to worsen into classic tonic clonic seizures that would last anywhere between 40 to 90 seconds.

Complexity was the word often used to describe Olivia's condition. We've done our due diligence.....we tried all the medications, none worked. We tried the supplement route through a well-known clinic in Chicago. We then tried the Specific Carbohydrate Diet (SCD), to which the Gut and Psychology Syndrome (GAPS) diet is developed from. We saw such amazing results from this diet we decided to take her off the many supplements she was taking because we didn't think she needed them. Well, we were wrong, and she crashed. Apparently, the supplements were helping her --- it was not a coincidence. It made sense that to get her back (at least to the place before pulling the supplements away), we should just put her back on the supplements -- but it didn't happen that way. The complexity often used to describe her was now ten fold, any change we made "upset" her fragile hypersensitivity to change and her path became even more confusing and "crooked". The Medicinal Cannabis has finally given us a mechanism to control the extreme Neurological Inflammation racing through her little body -- something every anticonvulsant medication failed to deliver on.

Our beautiful girl

Our beautiful girl

As a parent to a severely autistic child who has daily uncontrolled seizures, the memory of her being "normal" has never been forgotten. The hope of helping, if not stopping her daily suffering has been an uphill journey. Approaching her situation from a diet perspective is not an entirely new idea. Olivia was on a version of the SCD diet in 2005 with some success because I never introduced the homemade yogurt, which is the main healing modality. The main difference between then and now is the knowledge base of Dr. McBride and her ability to share the wealth of information she personally gathered as she cured her own severely autistic child with the SCD diet.

I do respect and am thankful for the excellent emergency practices of the conventional medical institution. Their services have literally saved Olivia's life on numerous occasions. Alternative care has taught me so much about the power of your own immune system, and the tragedy that can follow when the immune system is damaged. Why these two worlds can't work together to shape and protect us all is a shame.

This blog is really about our journey over the last 15 years. Although the focus is Olivia and her recovery, I will also include how this has affected our whole family and how we have dealt with this unexpected interruption in our lives.

Hebrews 11:1 -

Now faith is confidence in what we hope for and assurance about what we do not see.

Have a question or comment for me?

If you have a question or comment for me feel free to leave it under the "comments" section on the bottom of each individual post. If you would like to leave a private comment you can email me at kellynjohnson94@gmail.com.

Thursday, December 31, 2015

So long 2015! You began with the "worst of times", but ended with the beginning of the "best of times"!

I know. I know. I switched up the famous Tales of Two Cities opening sentence -- at least the first portion. The original begins with the "best of", but that would not apply to Olivia's 2015. I haven't read that famous book for years.....high school?......college? I pulled it up on my computer and as I started reading the first sentence, the first paragraph.... the tears started streaming down my face. Take a look:

"It was the best of times, it was the worst of times, it was the age of wisdom, it was the age of foolishness, it was the epoch of belief, it was the epoch of incredulity, it was the season of Light, it was the season of Darkness, it was the spring of hope, it was the winter of despair, we had everything before us, we had nothing before us, we were all going direct to Heaven, we were all going direct the other way–in short, the period was so far like the present period, that some of its noisiest authorities insisted on its being received, for good or for evil, in the superlative degree of comparison only." Tale of Two Cities

Most can and do relate to these words sometime in their lives. But this.....this defines our year. The year started off tough and became worse, but then became good.  July 1st marked an "epoch of belief", or the beginning of a distinctive change for Olivia's 15 year struggle with uncontrolled seizures with the legalization of Medicinal Cannabis. But, then she had her dips, seizure cycles would return and unbelief would sweep in like a thief in the night. Her year was filled with darkness, and then Light.....brimming with despair, then off set by Hope. The wisdom taught made the foolishness that much more foolish.

I love one commentator's interpretation of this powerful sentence. He says "these famous lines hint at the novel's central tension between love and family, on the one hand, and oppression and hatred, on the other. The passage makes marked use of anaphora which suggests that good and evil, wisdom and folly, and light and darkness stand equally matched in their struggle." Chronic illness. Chronic pain. Chronic suffering encompasses it all. It causes tension among the sufferer's family. It can destroy love. It can cause hatred. But then, in walks Love.

This year was really about holding on. Holding on to a hope and dream that her suffering could come to an end - either here on earth with a healing, or in heaven. I winced each time I read Proverbs 13:12 "Hope deferred makes the heart sick, but a desire fulfilled is a tree of life" because I knew that was a path my heart was heading. When I felt myself going this way, holding on to my desire for her suffering to end became the priority, knowing I needed His help to focus on it.

Soon, I began playing Jaime Grace's "Holding On" song over and over until the truth was embedded in my heart. Words like:

I just keep holding on to what I believe
Oh, I believe in you
Give me the strength to fight
And the heart to believe
When it’s hard to believe in you

Oh and these are the times when doubt’s tryin’ to creep in
And I need a reason that’s larger than life when hope seems hard to find
If only I can fight just a little longer
I know it’s gonna make me stronger


Pictures and videos are worth a thousand words. I thought I would post some from the beginning of the year to the end to show the incredible progress Olivia has made -- mainly since September of this year. She has a long way to go, but at least things are finally going in the right direction.

At the beginning of the year she could not sit up by herself.

Walking up and down the stairs became a challenge:

Some days she would have smaller seizures throughout the day.

She was so weak at times she could hardly eat.

But, then, her miracle began:

She started getting stronger:

Started drinking by herself:

And, most recently has started using a spoon again:

So.....so long 2015. I am thankful for the important changes you offered like Olivia gaining 12 pounds, smiling more, purposeful actions and reactions like putting her arms through her shirt armholes, pulling me over to the TV so I will turn it on, early stages of feeding herself again, and of course walking on her own. Although she is still is having some seizures, she has longer periods of seizure free days and we are hopeful we will find a therapeutic dose of the Medicinal Cannabis soon. We are ready to move into a new year of hope and further healing. We serve a Big God who encourages us to ask for Big Miracles. I for one am going for a complete healing! Welcome 2016!

Go God!!!!

Saturday, November 28, 2015

So very thankful..........Thanksgiving 2015

Happy Thanksgiving! I know I am a bit late with sharing my gratitude......but better late than never! Computer problems, time constraints and an inability to really think through what I wanted to share kept me from being timely. I loved seeing all the public messages on Facebook (and other social media sites) about being thankful and loving and holding those that surround you on the annual gratitude day.

I loved these messages because it's a feeling that is so coveted...so wanted by so many, so.......... lovely.   I really wish our story was just that......lovely.  I've thought about that word this entire weekend and I have to admit that sometimes reading about things that are/seem so lovely......so perfect.....so mistake free.....have the opposite effect on me. Sometimes, it can cause me to feel like a failure, inadequate, incapable and extremely imperfect because of my experience with Olivia's health over the last fifteen years. Everything we tried to help Olivia failed. Life's "hard". Trying to experience life as lovely felt impossible. 

To tell our story truthfully, you would see how simply unlovely of a journey it has all been. Unlovely in terms of the "fall out" that happens in a story like Olivia's. Fifteen years of suffering, confusion and disappointment in treatment failures that ultimately wore down relationships with distressing and traumatic consequences.

But this imperfect journey brings me to the good stuff. That good stuff being the One who can make the tough road lovely. Where Grace meets the hard road and shows the way. I feel it would be incredibly phony of me to appear like it was an easy journey for my family -- especially with the Medicinal Cannabis miracle. Phony, in that, it may appear as though I walked this difficult road in my own strength, when the opposite is true. I feel led to show you the journey of a frantic fear based mother who had no idea how to be "thankful in all circumstances" (1 Thessalonians 5:18) and learn to trust a God whose position on living is much the same as a saying my yoga instructor whispers quietly in class.......If you can breathe there, you can be there.

And so I am there. Breathing there. Accepting that our broken road prepares His will for us.  That our story has a brand new season that is just beginning. What's ironic is that it took the bulk of this 15 year journey for me to finally be content and thankful in my circumstances and then in an instant it was July 2015 and Medicinal Marijuana was legally available.....and the miracles began. It was then that I realized I was thankful before the blessing came - which said a lot about my transformation.

I am thankful for the first seizure free Thanksgiving in 15 years. I am thankful for Medicinal Cannabis, and the anti-convulsant properties that were created by God, not modern medicine. I am thankful for my husband, son and 2nd daughter. I am thankful that our family is emerging from "survival" living. I am thankful and hopeful for her future. I am thankful her bones are not frail anymore. I am thankful that she has gained 11 pounds since September. I am thankful for her progress shown in the video's below.

Video taken May 2015 - she was sliding downhill fast. This particular day I will never forget. Rounds and rounds of seizure - on the edge of my seat waiting to make the ambulance call.

First week in November - spending more and more time out of the chair. She is getting stronger and wants to walk again - to gain that freedom - but she realizes she is not ready to do on her own.

This weekend. All she wants to do is walk. Round and around our staircase gaining more and more control. 

My hope is that Olivia's progress will show God's faithfulness - even after 15 years of praying, believing but not seeing. God can restore the feeling of all things lovely --- check out His word:

Isaiah 61:1-3 The Year of the Lord’s Favor

The Spirit of the Sovereign Lord is on me,
    because the Lord has anointed me
    to proclaim good news to the poor.
He has sent me to bind up the brokenhearted,
    to proclaim freedom for the captives
    and release from darkness for the prisoners,[a]
to proclaim the year of the Lord’s favor
    and the day of vengeance of our God,
to comfort all who mourn,
and provide for those who grieve in Zion—
to bestow on them a crown of beauty instead of ashes,
the oil of joy instead of mourning,
and a garment of praise instead of a spirit of despair.
They will be called oaks of righteousness,
 a planting of the Lord or the display of his splendor.

Tenth Avenue North - Times

I know I need You I need to love You I'd love to see You but it's been so long
I long to feel You I feel this need for You I need to hear You Is that so wrong

Now You pull me near You When we're close I fear You Still I'm afraid to tell you all that I've done

Are You done forgiving Or can You look past my pretending, Lord I'm so tired of defending what I've become What have I become

I hear You say My love is over It's underneath It's inside It's in between
The times that you doubt me When you can't feel The times that you question Is this for real
The times you're broken The times that you mend The times you hate me And the times that you bend

Well my love is over It's underneath It's inside It's in between  The times that you're healing And when your heart breaks The times that you feel like you've fallen from grace  The times you're hurting
The times that you heal The times you go hungry and are tempted to steal
In times of confusion In chaos and pain I'm there in your sorrow under the weight of your shame

I'm there through your heart-ache I'm there in the storm
My love I will keep you by my power alone
I don't care where you've fallen or where you have been
I'll never forsake you
My love never ends
It never ends

Tuesday, November 3, 2015

Olivia wants to say Hi!

She hasn't said hi like this for many years!

Thank you so much for all the prayers! Keep them coming ;)

Check out the difference between the above video and this picture which was taken on the first day of school last year.

I am so thankful for the Medical Cannabis from Leafline Labs.

Thursday, October 29, 2015

Welcome! How about a front row seat witnessing a miracle?

Things can change quickly when you are finally on a correct path. For Olivia, this new path is seizure control with LeafLine Lab's Cobalt Medicinal Cannabis.

What do you think of the welcome picture? Although it may appear to be like any other kid painted, run of the mill birdhouse, this particular one is inspirational to me.  They were assembled a couple weeks ago.....on a sunny fall day by Lauren, her friend and I. Tim the Toolman's instructions were simple, but my anxious mind misread an elementary step in the very beginning which resulted in a complete tear out and rebuild. I never realized how much time it could take to pull out 20 nails and re-hammer them until I had to. But this is what a mom does. We take an extra couple hours of our day to fix our mistake - tear filled eyes are too much to bear.

Building this birdhouse reminded me of this writing from July 2013

"Look at the birds of the air, that they do not sow, nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not worth much more than they?  Matthew 6:26

This verse has really weighed heavy on my mind lately ---- one of the key verses in the bible about worrying - and why NOT to do it. I guess my years of perfecting this shameful practice isn't something to be proud of. Seriously though, several months ago a friend who was struggling said, "Oh --- hey, I thought of you and the bible today. I looked out the window and saw a dead bird lying on the ground ---- isn't there a bible verse that says that God will feed and take care of them? Guess he forgot about that one. He froze and died right outside my window."

I thought of this interaction one morning while I was in the kitchen, gearing up to make breakfast for my family and I heard a "ping, ping ping" on the family room window. I looked out and saw a robin sitting in the evergreen looking right at me. Within minutes it took flight and smacked its beak into the glass, bounced off and retreated to the original position in the tree. I turned around and thought to my self, "hmmm.....that should be the end of that - it hit the glass, felt the pain, he won't be bothering us again." WRONG. It was just the beginning of a week long period of the bird not just hitting the window once, or twice or three times a day - the obsessed creature banged and banged over and over all day for 7+ days. We tried several things to derail her. We bought some helium balloons and hung them in front of the window, we put up a scarecrow, we lined the window with paper......etc etc. At one point she was hitting the window every few minutes for hours. It was in this moment that I thought of my friend and his dead bird. The creature that lay just outside his window for him to see and pose the question about God not being there for him - especially when the bible says He feeds and takes care of them all.  It made me think ------ maybe his feather friend wasn't  old --- maybe he was just banging and banging on the window, trying to get in a place that wasn't for him and he was so stubborn and couldn't give up and finally ended up hurting himself. He could have been so focused on what wasn't for him that he couldn't turn around and see the food and twigs that God may have had for him ----- say ---- across the parking lot.

Have I been banging my head against a window that was never mine to fly through?  I can't help but think about the bird's situation - In the moments of her obsession, she was so focused on getting in my house, that she was unable to look behind her at the bounty of twigs and other nest building material at her disposal. How does this scripture and this irritating bird relate to me? Are there closed doors for a reason --- yes. Does God open a once previously closed door in His timing? I would think so.......
Did the bird worry about her situation - obviously since she was so focused on it -- it became her obsession. Why does it have to look so confusing even when you are praying for Him to "go before thee, and make the crooked places straight" (Isaiah 45:2)


But this one. This birdhouse was designed and painted by my beautiful girl while I was inside sitting on the couch tending to my heavily beaten fingers. Her choice in design is for me, for Olivia, for our journey. It is not a mistake that the entire front is a rainbow of colors, and the "welcom" (she ran out of room) is meant for this post ---- an invitation to you to follow this rainbow designed appointment by God -- just for this point in time.... for her sister. This rainbow on the front is the perfect size to cover my broken heart and is interpreted by me as God's promise. His promise that His will for Olivia is beginning to unfold, just as the rainbow for Noah was a promise for us all.

This is one of my favorite devotionals from Streams in the Desert:

For the Vision is yet for an appointed time…though it tarry, wait for it; because it will surely come, it will not tarry (Hab. 2:3).

In the charming little booklet, Expectation Corner, Adam Slowman was led into the Lord's treasure houses, and among many other wonders there revealed to him was the "Delayed Blessings Office," where God kept certain things, prayed for, until the wise time came to send them.

It takes a long time for some pensioners to learn that delays are not denials. Ah, there are secrets of love and wisdom in the "Delayed Blessings Department," which are little dreamt of! Men would pluck their mercies green when the Lord would have them ripe.

"Therefore will the Lord WAIT, that He may be gracious unto you" (Isa. 30:18). He is watching in the hard places and will not allow one trial too many; He will let the dross be consumed, and then He will come gloriously to your help.

Do not grieve Him by doubting His love. Nay, lift up your head, and begin to praise Him even now for the deliverance which is on the way to you, and you will be abundantly rewarded for the delay which has tried your faith.

I hope my journey to faith over the last 15 years will prove inspirational. Frankly, there is no logical reason why I retained it --- we had many rough years. Believe me, during those so called logical (or is it illogical) years I begged and pleaded for peace in accepting her as she was. That peace never came....peace only came while meditating on her healing, it appeared that God wasn't going to allow me to give up.

I am so happy you are following our journey! Please feel free to share this blog address with anyone you think would enjoy having a front row seat to a miracle in the making! We are blessed with your company and hope to bless you with each and every post!

Wednesday, October 21, 2015

Reclaiming my stolen and broken heart

This calm I have been given is such a dream --- something I have been visualizing for 15 years.  I keep pinching myself.......resisting the urge to "wait for the other shoe to drop", as it has many times in the past.  I've experienced my share of "Marah" situations, just like the Israelites did during their wilderness experience.

"When they came to the oasis of Marah, the water was too bitter to drink. So they called the place Marah (which means "bitter"). Exodus 15:23  

They hadn't had anything to drink in days, and the first trace of water was bitter - undrinkable. They were beside themselves with grumbling, because really ----- why would God put undrinkable water in front of His chosen "dehydrated" people? The testing of their faithfulness had begun - did they forget the Red Sea? In modern times does God create these Marah situations or are some created by man? Failed attempt after failed attempt with ineffective medicine with no other option because of legalities can cause bitterness for those who suffer. Why do children with uncontrolled seizures have to wait for relief? To wearily walk from Marah to Marah?

Before the Cobalt, Olivia had a hard time holding her body up - her core was so weak. She has started drinking by herself again - holding her own cup. Have I mentioned how thankful I am?

I want to keep sharing our story, to share where it was that we came from.  I indulge in this new sweetness as her days continue to get better and better and I forget the bitter. I am so grateful for this incredible plant.....incredible in so many ways, for so many people who have suffered for so long.


Written May, 2013

Nothing is Too Hard

"Is there anything too hard for Jehovah?" (Gen. 18:14).

Here is God's loving challenge to you and to me today. He wants us to think of the deepest, highest, worthiest desire and longing of our hearts, something which perhaps was our desire for ourselves or for someone dear to us, yet which has been so long unfulfilled that we have looked upon it as only a lost desire, that which might have been but now cannot be, and so have given up hope of seeing it fulfilled in this life.

That thing, if it is in line with what we know to be His expressed will (as a son to Abraham and Sarah was), God intends to do for us, even if we know that it is of such utter impossibility that we only laugh at the absurdity of any one's supposing it could ever now come to pass. That thing God intends to do for us, if we will let Him.

"Is anything too hard for the Lord?" Not when we believe in Him enough to go forward and do His will, and let Him do the impossible for us. Even Abraham and Sarah could have blocked God's plan if they had continued to disbelieve.

The only thing too hard for Jehovah is deliberate, continued disbelief in His love and power, and our final rejection of His plans for us. Nothing is too hard for Jehovah to do for them that trust Him
--Messages for the Morning Watch


The bible study I finished up a couple months ago was so timely. It focused on King David and how God was able to use him even when David did not do what God asked him to do and the consequences David faced in his disobedience.

During this study I learned that fear was Beth Moore's biggest issue ----similar to me. I have struggled with it from the beginning. Fear of Olivia's seizures, fear of medicine failures, fear of her advancing age, and of course, fear of her dying from a seizure. Beth mentioned, "we can allow fear to stop us from completing a task you feel God wants you to do. In the end, we all have the choice  - Will you obey your fear or obey God, trusting He will show up and do it through you.  Whatever He's called you to do is more than you can do. It will take Him to do it through you. You cannot complete your calling by yourself - it will be beyond you."

So, how do I get there? What can I do to cooperate with God so He can do a great work in my life? The answer lies in something I thought I had a handle on, and I had never thought of it this way ------- I have to move past my devastation with God, and for me that devastation lies in one question  ---- Why has He allowed this to happen to my sweet girl?

David's idea was to move the ark of God from the house of Abinadab to Jerusalem to ensure God's blessing on the entire nation. He went ahead and moved it without following the prescribed plan from the Lord which ultimately resulted in the death of a well-meaning man (Uzzah) which angered David, and since he didn't understand why God would do such a thing especially since he thought he had the right motive. David became very afraid of God. 2 Samuel 6:1-10

Who can't relate to those feelings? Angered when something devastating happens to you or your loved one, yet feeling afraid of God, as if you are being punished.  But, as we learn, for David to receive the blessings from God that were to come, he needed to move past this personal devastation.

I loved what Beth says here:

"Nothing can throw us any more drastically in our faith walk then when God does not behave in a manner like we thought He was supposed to.  When He didn't deliver the person like we asked Him to from that particular disease.  When in everything we understood, everything we thought we had known Him to be, and He suddenly does something entirely different from that. Like we could say "What was that"? Sometimes we can feel angry over what we think the Lord has done and we can feel scared to death of Him. We can go through the act of going to church, singing praise and worship songs - our mouth is open to Him but we hold our heart far from Him because now we do not trust Him, because God did not do what we told Him to do, and God did not behave. We can live the rest of our lives without recovering from that one if we want to. Some people do not move past their devastation with God because they are going to figure it out or their not taking another step with Him."

To trust God in the midst of unexpected circumstances is something that we are challenged to do, like David was. This really made me ask myself - have I truly moved past my own personal devastation with what happened to Olivia? I was angry that God let this happen to her and I was/(am?) afraid of what else He may allow. Has my heart recovered? Do I really trust Him? I have put on a really good show, and I can honestly say that I might not fully trust Him with what He has planned for Olivia's life. So many times I have felt like saying to Him - "what --- again???!!! where did that come from?". I am trying to do all the right things here --- I mean I am in the Word, I am doing a bible study, I am seeking His guidance and direction and one failure after another seem to mount. I hear stories of other people who start to make decisions for the welfare of their sick child and step by step their children walk out of that dark hole called autism/mental illness. I've been stepping and walking in circles. So that is where the fear enters in and I wonder and doubt and ultimately sink.

This week I finally understood that in no way, and in no uncertain terms could I move past this devastation without His help. Everything I am doing is useless if I don't trust Him. I strangely never thought of asking for His help in reconciling my anger, but in the end I realized that I was simply powerless in my attempts to cover it up and put on the ultimate show for Him. He wasn't buying it, and apparently deep down I wasn't either. I feel as the blinders have been taken off my heart as well as my eyes and I now know that the fear I have been living with for the last 13 years was rooted in the fact that I was most afraid of Him - of what He was going to do to me (or allow) next, and at the same time angry that He chose me to be a person who has had to watch my daughter suffer for so many years. Makes you wonder how He does his choosing. To humble myself and allow Him to repair my broken heart was the only way to move past this devastation.

Currently, I absolutely love a song called "Jar of Hearts" by Christina Perri. For some reason, I am so drawn to her lyrics. I am convinced that she would never intend someone to interpret them the way I do. This particular song's video drew me in. It is about her boyfriend, who was the ultimate womanizer and betrayer. He slithers around from one woman to the next "stealing' each woman's heart, while depositing it neatly in his possession. Although I have never known a man like this, I have to admit I completely identified with the singer as someone who has been preyed on. For me, I overwhelmingly relate the bad guy of this video, to the "bad guy" of the world - the enemy, the devil ----  as he prowls around stealing hearts for his very own jar.

Some may be reading this, thinking ----- oooohhhhhh the big scary devil, but it's very real and very biblical that the enemy is prowling around looking to kill, steal and destroy our lives (Johns 10:10). As Priscilla Shirer said, "He will kill your dreams, steal the truth of God from your heart and lips and destroy your family. We have an enemy. He seeks to divert us from the course set for us by our Father." He loves to distract us with his hopelessness and fear. Or, we can be dazzled by the things that many times aren't so good for us. We are all tempted by different things over the course of our lives, that change the path that God prepared for us.

Of course, the entire lyrics can't qualify for my interpretation, but many do --- like:

"No, I can't take one more step towards you - 'Cause all that's waiting is regret", how many times do I believe his lies and doubt God's promise? I feel as though whenever Olivia is going through a difficult time this is what I do. I turn my focus to her circumstances get incredibly scared as I step (sometimes run) to him and he brings me down. When she makes it through the adjustment, or whatever it is all I do is regret my unbelief. It's been an incredible difficult season to believe and I continually fall victim to him stealing my faith by making me question that God is actually FOR me. Quite literally, I learned to live half alive - And now you want me one more time. The good news is that as the song progresses you can see that questioning, her strengthening and her wondering why she gives him (her boyfriend, but in my eyes the enemy) so much dang power --

And who do you think you are?
Runnin' 'round leaving scars
Collecting your jar of hearts
And tearing love apart
You're gonna catch a cold
From the ice inside your soul
So don't come back for me
Who do you think you are?

By the middle of the song you see her grow stronger and proclaim that I have grown too strong to ever fall back in your arms.

Maybe my comparison is silly, but as you watch her song, you see the other women who have lost their hearts to this same betrayer, as they rise up and come together against him. They choose to express their collaboration through an artistic dance. This scene is so symbolic to me. As mothers of special needs children, we tend to feel isolated ---- like ours is the only heart that has been destroyed as we watch our children struggle to do things that they should be able to do ---- think clearly without anxiety, talk, play........live.  Many of us really do learn to live half alive, as we helplessly watch them suffer. But what if these mothers could band together like the scorned women in this video? I love this quote by Graham Cooke:

"The enemy goes to great lengths to denigrate women, because the enemy has a pathological need to prevent the bride from emerging. History tells us that whenever women are treated with love and respect, a society flourishes."

Towards the end of the video, I can identify with the passion and strength in her voice as she belts out "Don't come back for me, don't come back at all", and as I watch it I envision myself with the same confidence belting this out to my betrayer. Watching her reminds me of the frequent dreams/visions I have had over the years of crawling on the ground with an invisible weight trying to keep me down. Not surprisingly, this recurring dream has changed throughout the years as I work my way up to standing despite the incredible oppression pushing me downward. Finally, as He as made me stronger, a shrug is all it takes to release myself from what seems to be invisible grips on most days, while on just a tiny few now, I am regrettably held captive.

By the end of the video, it is me, not Christina who recaptures my own stolen heart as I step over the prince of darkness as he crumbles to the floor and I triumphantly walk right over him.  Because for me, he is the creator of my hopelessness and the frequent nudges to just give up ---- to accept her as she is. He is the father of sickness, greed, immorality, destructive emotions. He instigates the feelings of self pity and anger when day after day she seems to be exactly the same --- still terribly sick. Is it a coincidence that Christina is in a make-shift bridal gown? ---I  think not. Maybe God is setting the stage for mothers to come together and create a society to protect our children from the fate that unfortunately belongs to so many in the United States. To stop him from "tearing love apart". Oh - and the rest of John 10:10 says 'I came that they may have life, and have it abundantly. (John 10:10 NASB) I claim that for my Olivia and my family ---- Abundance!


Scriptures/Quotes I am liking:

"Sometimes there is more at stake than just the circumstances we are believing for. There is more on God's agenda than just your current problem. Our circumstances are not just about situations being resolved, they are about us being changed in the process." Graham Cooke

By faith Abraham, even though he was past age --- and Sarah herself was barren --- was enabled to become a father because he considered Him faithful who had made the promise. Hebrews 11:11

Because the Lord, the Eternal, helps me I will not be disgraced; so, I set my face like a rock, confident that I will not be ashamed. Isaiah 50:7

"If we do not allow God to transform us we will find ourselves repeating our past." John Paul Jackson

"When pride comes, then comes disgrace, but with humility comes wisdom." Proverbs 11:2

Saturday, October 17, 2015

Olivia only had 1 seizure in 21 days!!

For still the vision awaits its appointed time;
It hastens to the end—it will not lie.
If it seems slow, wait for it;
It will surely come; it will not delay. (Habakkuk 2:2-3)

Believing for this vision - waiting for it, hoping for it, and finally seeing it.

Olivia was fortunate enough to finally start Medical Cannabis in late July of this year. In Minnesota, Epilepsy is one of 7 qualifying conditions a person must have to receive treatment with this life changing medicine. The other conditions are Cancer, Glaucoma, HIV/AIDS, Tourette Syndrome, Amyotrophic Lateral Sclerosis (ALS), Severe and persistent muscle spasms, including those characteristic of Multiple Sclerosis, Crohn’s Disease, Terminal illness, with a probable life expectancy of less than one year.

Olivia receives her prescription from Leafline Labs located in Eagan, MN. This medicine comes in the form of a medicinal suspension homogenized with coconut oil. There is some confusion for the lay person on what it consists of and if the patient receives a "high" when taking it. The specific medicine that Olivia is taking is part of the "Cobalt" line at Leafline Labs. The Cobalt line of medicines are high in Cannabidiol, or CBD, which is an ingredient that does not cause psychoactive effects, and low in Tetrahydrocannabinol, or THC, which causes the psychoactive effects of "getting high."

Medicinal Cannabis is, among other things, anti-inflammatory, anti-convulsant, anti-anxiety and can improve sleep. I will be doing more research for further posts. If interested, you can read about general Medicinal Cannabis information for Epilepsy at the Epilepsy Foundation.

For 15 years, Olivia did not respond to any anti-seizure medications. Like many of the patients who receive Medicinal Cannabis, we tried approximately 10 drugs throughout those years. Many people assume that seizures can be controlled through medication. This has not been the case with Olivia, and apparently with many, many others who live in the United States. I just read an article recently that states there are 3 million people who have epilepsy in our country ---- and 1 million of them live with seizures that are not controlled. I have always felt so alone in this journey, but according to those numbers, too many people suffer like Olivia - a large percentage on a daily basis.

Leafline Labs listened to Olivia's story to provide an individualized treatment plan from the very beginning. Because she is extremely hypersensitive to changes in her body, the pharmacist developed a "weaning up" schedule with the Cobalt, titrating her up slowly while keeping a journal, detailing what her days were like. Almost immediately I noticed her sleep was better. For many years, Olivia would be up most of the night regardless of any medication we tried. Inevitably, she would not only respond poorly to the medication, but eventually it would start causing problems. We would put her on a medication only to start weaning her off a few months later.

Our first month on the Cobalt she had 15 seizure free days, followed by a cycle of seizures and an illness which landed her in the hospital. Her hospital stay was lengthened due to an adverse effect of a medication - this girl is so sensitive to medications! Time will tell what her therapeutic dose will be.

Night time was the worst. Each and every night her suffering would begin. As she drifted off to sleep in her hospital bed, I would lay my head down on my pillow knowing I would be up moments later.

The seizures would ravish her throughout the night, sometimes stopping for a bit. But, inevitably, the awful sounding morning "alarm" would begin as her screams could be heard throughout the early morning quiet. Our whole family suffered along with Olivia. Every. Single. Night. The Cobalt changed all this. The quieter nights came all at once, approximately 4 weeks after starting the medication. I relished in having to use a regular alarm clock by 6 weeks in --- the morning tonic clonic had disappeared into the night. "Could this really be working?" is all I could think as I climbed out of bed each morning without the old familiar heavy heart.

She could never gain weight......ever. She was so thin and frail, her wrists and ankles felt as though they could be snapped at any moment. Within 6 weeks on the Cobalt, her bones felt and looked heavier - she had gained 6 pounds in 4 weeks. For those of you who have followed our story, I still believe that the GAPS diet will be the long term solution for her. The GAPS diet is an anti-inflammatory diet. Many of the children who have seizures and have responded to the diet were fortunate enough to have success with an anti-seizure medication while their bodies healed. Within a couple years on the diet they were able to discontinue the medication. Natural healing is hard. There are many ups and downs, healing crisis's and metabolic changes that happen as the body heals naturally. Olivia's system has been so screwed up for so long making any change (even for the better) would send her into a tail spin. Having something that could stabilize her nervous system became mandatory - but no drug offered this kind of success. I am hopeful that the Cobalt will offer her this stability so we can proceed to introduce the GAPS healing protocol.

While looking through my journal, I came across this writing from two years ago when Olivia was in the hospital. I thought I would include in this post to provide a frame of reference on what I learned about waiting ----- waiting for her miracle.


Written October 2013......
I truly feel as though I have had a "front row seat to the longest wait", as Francesca claims in her song "Strangely Dim", and I am sure there are others out there that may feel the same way. What I didn't realize, as I laid down on my hospital pull out bed for the night, was how much this book "WAITING: Finding Hope when God Seems Silent by Ben Patterson" I purchased on a whim would change my waiting and ultimately change my hurting heart. What's interesting is that the content and/or idea's presented in this book are not new to me. In fact, I have read many books that talk about the concepts he describes, but for some reason the way he explained it with the stories of two bible greats, it resonated deep to the questions I have had for 13 long years,

Ben Patterson raises the questions that any good "waiter" has mumbled under the pangs of despair...."Can I trust You? Is there any meaning in all this? Why me? How much more do you think I can stand? What are You doing Lord?" His central conviction centers on what God is doing with us while we wait. The character He is forging - "because we know that suffering produces perseverance, perseverance character; and character, hope". Yeah, yeah, yeah - I have heard it and read it before and intellectually I can wrap my head around it, but at the end of the day my heart was still flailing and continued to ask  - "Why her, and why me?"

He explains that, "To wait with grace requires two cardinal virtues: humility and hope. Humility comes from being very clear on the fact that God is God and we are merely His creatures. Humility recognizes that we exist for God's sake, not He for ours. Only the humble can wait with grace, for only the humble know they have no demands they can lay on God and his world. We believe we have the right to be happy - now. Hope is also essential to waiting. Why wait unless there is something worth waiting for? To wait with humility and hope is essential for graceful waiting." He dives into the lives of two bible greats who had to wait ---- Job and Abraham. Job's struggle was with humility, while Abraham's was with hope. I felt comforted when I read that waiting with these two virtues rarely comes to us naturally ---- most need to cultivate this perspective.

We all know the story of Job ---- A wealthy, God-fearing man who loses everything - his children, his health, his wealth. Even Job wondered why it had happened to him and why was God so silent? But as Mr. Patterson states, "Our waiting will remain intolerable until we get clear on who God is and who we are before God". Job had this going for him....he knew that he had nothing when he arrived on this planet and he would have nothing when he left. He viewed everything he lost as a gift - his famous words, "The Lord gave and the Lord has taken away". He never thought that his rights had been violated or that he was the victim of a great miscarriage of justice..... unlike me. I have a 5 disc cd set all about Job and for some reason I did not get this jewel of information from it. Totally missed this virtue as I submerged myself in resentment and injured pride. "How dare He" were the words that floated around in my head, as the fairy tale of entitlement encased my heart. Why is it that I believed that I deserved happiness? Job was thankful, even with his monumental loss - me I was angry, because gosh darn-it Olivia deserved a good life - that is what many Americans are taught. I like how he says it:

"There is no single area where the faith of the Bible is more sharply at odds with twentieth-century American culture that this. We all seem to believe we have certain rights: the right to be happy; the right to a culturally acceptable standard of living; the right to health and pleasure; the right to a happy marriage and a fulfilling job. But if we are to think as people of the Bible, then we must never think in terms of our rights. We have no rights! We came into this world with nothing and will leave this world with nothing. Whatever we have, we have because God in his grace and generosity has given it to us." I felt I had always been thankful, but to retain that thankfulness while my heart was breaking with grief became the real challenge. So I did as any mother in my shoes would do, I forgot about this important ingredient and instead focused on my baby girl - to fight for her "rights".

One of the first books I read during those "crazy" years was "When Bad Things Happen to Good People by Harold Kushner. For years, Rabbi Kushner cares and helps his parishioners hold onto God as they deal with tragic life altering situations. Just another day at the office for him until tragedy hits his own family. His 3-year-old son is diagnosed with Progeria, a rare disease in which a person ages rapidly. Watching his son suffer, he began to think why God would allow such an awful thing to happen to an innocent child (hmmmmmmm...... sounds familiar). His conclusion is that God is good and God is compassionate but not even God can be everywhere at once. We live in a random universe, God can do nothing to prevent our suffering - i.e. He doesn't have control. When I first read Mr. Kushner's book, this kind of thinking actually was comforting ---- see I am not a victim of God's. He loves Olivia as much as he loves other children, he just couldn't protect her. Mr. Patterson has a different view:

"This is not the God of the Bible nor the God of Job! That is why Job's faith, rather than giving him comfort in his loss, instead is the cause of his greatest agony - at least at first. Job loved God and was convinced of his absolute goodness and his absolute power. Job knew he had done nothing to deserve what had happened to him. Then why? To use the words of Archibald MacLeish, from his play J.B. "If God is God He is not good. If God is good he is not God." For Job and the Bible, Harold Kushner's good God is not God. Neither is Macleish's. Job's faith will survive this great trial, but not without a monumental struggle."

As we know, Job had friends that came and reasoned and conversed with him about why this terrible thing had happened to him and the detrimental downward spiral of the pages and pages of "dialog". In the end God finally spoke and "shatters" Job's egotism by reminding him of the limits of his intellect.  I love how Mr. Patterson says it:

"Job's egotism is more than intellectual; it is the unique kind of egotism that often comes with great pain. The effect of pain is claustrophobic: it has a way of making the sufferer implode upon himself. The great temptation of suffering is to let your pain become the whole world and to start believing that all that ever was, is and will be, is your private hell. As hard and as brutal as it may seem, God's frontal assault on Job's egotism really liberates him from the notion that his suffering is the whole world. It tells him that there is a great big world out there, a world that is infinitely greater than his suffering."

Olivia's tragedy became my whole world and was the vehicle that drove me to try and figure it out - but I obviously have limits to my intellect, and so do the professionals that treated her. It reminds me of the day that someone close to me told me that I "am not smart enough to figure out what happened to Olivia." That there are "medical scientists and doctors that can't even figure it out." As focused as I was, I never saw that limitation. Soon I clung tightly to Philippians 4:13 -- "For I can do all things through Christ who gives me strength." Why I strangely thought I could google my way to a cure was in a sense being the egotist that Mr. Patterson talks in further depth about. My My My.... My strength, My intellect, My reasoning. There was no room for God's opinion or God's leading.

Bad things do happen to good people, and I happen to be one of them. Olivia is one of them. I finally found comfort in the sovereignty that is all God. As Mr. Patterson says, "With the departure of Job's egotism came a wise agnosticism. He didn't know why everything happened, and he didn't have to know why. All he had to know was who was in control. Job concluded that what puzzled him was no puzzle to God, and that was enough. That is what the word agnostic means --- one who doesn't know. There are some things in this life that we cannot know, and the sooner we come to terms with that fact the happier we will be. Usually it is our egotism that feels it must know everything." And here I thought I had no ego ---- ha - just kidding.  Basking in His sovereignty I can lay claims to Romans 8:28 "And we know that in all things God works for the good of those who love him, who have been called according to his purpose." I still have that going for me. God knows I love Him -- and at this point that is all that really matters.

It's ironic how I thought I had grown so much, but in an instant God sends me deeper still. I love how He reveals all that may not be right in the exact dosage. The true journey for me as I poured over Job's life with a new perspective is that indeed my ego must depart to make room for the trust that is long over due. To understand that "we serve a God who can be trusted even when his ways transcend our intellects."

Finally, I am humbled. I can acknowledge the pain as I watch Olivia have seizure after seizure, but I can also now see and accept that our lives are just a "vapor". There is freedom in clarity. Clarity as to my (and Olivia's) place in this vast universe. And as Mr. Patterson explains that "Until we are absolutely clear on the fundamental truth that God is indeed God, our imperious egos will forever be clamoring for God to explain himself to us. And if He chooses to remain silent, we will conclude he is incompetent or malevolent or uncaring or simply absent. And our acute, intense waitings will embitter and destroy us. That clarity is nothing more nor less than the virtue of humility."

I do not know the reason  ---- why have we been waiting so long? But I now know that although God is aware of my "warrior" capabilities, He is looking for the humble reverence that He knows I need in order to wait with PEACE - that 5 little letter word that I use a lot, but had such little understanding of it's soul quieting power.

Waiting gets to the best of us. I can't stand it - they couldn't stand it. He continues to say, "(Waiting) demands persistence when common sense says, "Give up." It says, "believe" when there is no present evidence to back it up. Faith is forged in delay. Character is forged in delay. The forge is the gap between the promise and the fulfillment."

"Humility and hope are the essentials of waiting. But it is humility that makes hope possible. Until you are clear that it is God, not you, who is the master and you, not God, who are the servant, you will feel your rights have been violated whenever you are forced to wait. You will resent your waitings and find every rationalization to take matters into your own hands. In other words, you cannot hope in God until you have ceased to hope in yourself." Even Abram second-guessed God, more than once. Does he remember Egypt and his poor decision-making? Apparently not because he got together with Haggar to "help" God along.

But God is patient with us, him...... me. After reading this book, I was hit with one of the big "Ah Ha" moments that could come across as common sense to someone who has never been in a pit as large as the one I have been living in. That, in the end, God is actually the one waiting --- waiting on us that is. "However long it takes, he can wait until we open our eyes. If we wait it is because God is waiting for us to become the people he wants us to be. Part of the waiting God does for us is to see us through the consequences of our bad choices." This is where we are at this point of time --- I feel it, I know it. God is so incredibly gracious to my family. He is there as we work our way out of the bad choices that were made in several different areas. Haggar called out as God told her to return to Sarai, ----- "You are the God who sees me" (Genesis 16:13). I know now he continues to refine me, and that He does see Olivia. In fact, He has been coaxing me over and over throughout the last thirteen years to just give her to Him. It was apparent to Beth McDonald when so many years ago I told her of the vivid dream I had. I was sitting on a grassy hill and all of a sudden this hand came out of the sky and was sort of cupped like it was holding water. I interpreted it as --- God is giving me information ---- he is leading me on this journey. Beth saw it differently, and I believe she is right. She thought it was God's way of saying - "Give her to me". Shamefully, I really thought I had some control.


More on waiting later......I don't want this post to get too long. ;)

I think what Ben Patterson's book taught me in simple terms is that first I need to have humility in order to seek Him  --- once there He can teach me how to believe and have hope --- so that my prayers can be powerful.

Wednesday, September 30, 2015

Why Believe?

I am sure many people who have familiarized themselves with our journey wrestle with this very simple question ----- "Why on earth does she still believe her daughter will be healed?"

It has been 15 years. 15 years of searching, striving, reaching, trying, clinging (to hope), pursuing (and perfecting faith); and failing (miserably along the way). Who do I think I am anyway?

Failing is inevitable when no one seems to know what is going on. Therefore, believing can be difficult when left up to ones self to accomplish it. Believing can take us out of our comfort zone and propel us to where the magic happens. More often than not, this is easier said then done; especially when your kid is having seizures everyday and nothing seems to stop them. How is it I continue to believe?

This wouldn't be one of my writings if it didn't include one of the amazing songs that feels like it was written for me. Laura Story's "I can just be me" fits nicely.

I've been doing all that I can 
To hold it all together, piece by piece 
I've been feeling like a failure 
Trying to be braver 
Than I could ever be 
It's just not me 

So be my Healer, be my Comfort Be my Peace 
‘Cause I can be broken 
I can be needy, Lord, I need You now to be, be my God 
So I can just be me 

I've been living like an orphan 
Trying to belong here 
But it's just not my home 
I've been holding on so tightly 
To all the things that I think 
That satisfy my soul 
But I'm letting go 

So be my Father, my mighty Warrior 
Be my King 
‘Cause I can be scattered, frail and shattered 
Lord, I need You now to be 
Be my God so I can just be me 

‘Cause I was lost 
In this dark world 
‘Till I was finally found in You 
So now I'm needy, desperately pleading 
Oh Lord, be all to me 

So be my Savior, be my lifeline 
Won't You be my everything? 
‘Cause I'm so tired 
Of trying to be someone 
I was never meant to be 
Be my God, please be my God 
Be my God so I can just be me 

This song resonates deep within. I identify with its entirety. For so many years I have felt so alone in my belief that she could recover - feeling kind of like an "orphan" trying to belong in this wilderness place I have been living. I now know that the work the Mighty Warrior has completed in me over the last several years makes me able to finally achieve the meaning of my name, which happens to be Warrior. I would think that a warrior at heart is able to believe in a worthy battle, with impossible odds - don't you? All I know is that He makes me want to be brave. You need to be brave when immersed in the dark world of mental/neurological illness. It's dark. It's confusing. It's a mystery, it doesn't make sense and even the "professionals" do not have a handle on it. It literally sucks the belief right out of you.

be·lieve (biˈlēv/)
1.     accept (something) as true; feel sure of the truth of. To be convinced by, trust, have confidence in the truth, existence, reliability or value of something, consider honest, consider truthful, to have religious faith

2.    hold (something) as an opinion; think or suppose.

Believe, or........better yet believing.

I've been thinking a lot about the word believe. In order for the epileptic boy in scripture to be healed, believing was not optional for the boy's father. True believing........deep down.......absence of mistrust....hiding in there behind the fear, kind of believing. The kind that is sought after by those who suffer deeply, those who try to believe the concept that true hope is born in suffering. I needed to remind myself of that boy, and his father, for whom has taught me:

"Teacher, I brought you my son, who is possessed by a spirit that has robbed him of speech. Whenever it seizes him, it throws him to the ground. He foams at the mouth, gnashes his teeth and becomes rigid. I asked your disciples to drive out the spirit, but they could not." "O unbelieving generation, " Jesus replied. "How long shall I stay with you? How long shall I put up with you? Bring the boy to me." So they brought him. When the spirit saw Jesus, it immediately threw the boy into a convulsion. He fell to the ground and rolled around, foaming at the mouth. Jesus asked the boy's father, "How long has he been like this? From childhood, he answered. It has often thrown him into fire or water to kill him. But if you can do anything, take pity on us and help us. "If you can?" and Jesus. Everything is possible for him who believes." Immediately the boy's father exclaimed, "I do believe; help me overcome my unbelief!" When Jesus saw that a crowd was running to the scene, he rebuked the evil 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." Bus Jesus took him by the hand and lifted him to his feet, and he stood up. After 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 and fasting." Mark 17-29

My little one, Olivia's sister was fascinated this summer with Helen Keller. She read her books, watched the movie and did a bit of research on the Internet. She was spellbound to the point that she and her bestie, Summer, began to role play the characters of Helen and Anne Sullivan (Helen's teacher). As I watched them march around in our backyard, I instantly realized that Lauren was playing the part of Helen. She was stomping away, refusing to be held, refusing any help or direction that Summer (Anne Sullivan) was offering. Lauren acted out the fear, uncertainty and unbelief that one would expect from a little girl who was both blind and deaf. Complete darkness. As I watched this adorable free show, I soon felt as if God was bending my ear to whisper that I am much like Helen - only spiritually. The last three years had led me to a spiritually darkened place of confusion and uncertainty. Because Olivia's health had quickly deteriorated, I was blind-sided and began entertaining the fear again. He went on to show me how I was refusing to grasp what He wanted me to hear because my ability to ask Him to help me believe was slowly slipping away.

I have read and reread the Charles Spurgeon sermon 'The Secret of Failure' over and over. It speaks life into my questioning heart and keeps me focused on that very powerful word ------- believe.  Mr. Spurgeon says, "There was faith, even though it was mixed with unbelief. It was a faith that made him pray, as I have already told you, and the Lord Jesus Christ found out where the faith was. He had, as it were, broken the great black lump of dead coal that looked to be nothing but unbelief, and there was the living light of faith burning in the very center of it."

God has had me in the wilderness lately, even with my strong desire to "believe". Living it.......enduring it, learning from it and about it. The Beth Moore Deuteronomy study is timely and deeply educational for my wilderness encamped soul. This study details the Israelite's as they are poised on the east bank of the Jordan River, preparing to finally leave the faithless generation in their wilderness graves, and courageously fight for and possess their Promise Land. The ever-faithful Moses reviews their parent’s failures and gives them courage to fight for the land that God swore to give to their fathers. It calls them to remember who God is and what He has done for them. The mistakes made by their parents should not be repeated. I can imagine how anxious and expectant they felt and the thrill they must have had bubbling out of them at the prospect of finally leaving the wilderness of unbelief for their promise land. "And He brought us out from there, that He might bring us in and give us the land that He swore to give to our Fathers." Deuteronomy 6:23

Have you ever thought about Joshua and his time in the wilderness with all the unbelievers? He was one of two of the spy's, sent to scope out this so called "promise land" that actually believed they could defeat their enemies and take hold of it. He believed; yet he was left to wander in the wilderness for 40 years, right along side the unbelievers. I often wonder if he had any "human moments", like maybe deep down he was angry, even bitter at the rest of his contemporaries for their inability to trust and believe God. Have you ever wondered why we, like Joshua, seem to get pulled into other people's wildernesses? To believe, yet not receive.

God called Joshua to believe and he continued to, even when he was left in the wilderness. It is within these scriptures that I ultimately find the strength to believe --- even though it has been 15 years. The father of the epileptic boy encourages my heart. He teaches me as I fiercely cry out "I believe"; but humbles me in the next breath as my heart is sent after the One that can banish the unbelief that hides in the corners of my suffering. It took me years to figure this gem of a lesson out, but then again I was watching this everyday. And many times they didn't stop:

Always thankful for His guidance, and even more thankful for His love and protection over Olivia as we have navigated this painful journey.

"He brought us out from there that He might bring us in and give us the land that He swore to give our fathers." Deuteronomy 6:23

Monday, September 21, 2015

We are home! - Thank you for the prayers!!

Thank you so much for your prayers for my girl!

We were finally able to leave the hospital after a long 10-day stay. She is still not recovered from this huge setback and unfortunately lost a bit of weight, but we are home. Olivia is very fragile and extremely hyper sensitive to any upset in her system - especially when she gets sick.

If you choose to continue reading her story, you will learn my opinions on what I believe caused the decline in her health. It involves the wellness care she received as an infant, and subsequent advice during different stages in her life.

Today, though, I want to celebrate the amazing emergency medical treatment she received while she was at Minneapolis and St. Paul Children's hospitals. I am truly thankful for the caring, wonderful nurses that took care of my girl during that stressful and confusing 10 days and the open minded doctors at St. Paul Children's. They saved her life and I am forever grateful.

Tonight I thought I would share an entry to my journal originally written in August of 2013. We were well into the second year of her health crisis. These were very stressful days.


I’m tired...I’m worn...My heart is heavy...From the work it takes..To keep on breathing (believing) ...I’ve made mistakes....I’ve let my hope fail...My soul feels crushed...By the weight of this (my) world...And I know that You can give me rest...So I cry out with all that I have left...Let me see redemption win...Let me know the struggle ends...That You can mend a heart that’s frail and torn....I wanna know a song can rise....From the ashes of a broken life...And all that’s dead inside can be reborn...'Cause I’m worn...

I know I need to lift my eyes....But I'm too weak, life just won't let up.....I know you can give me rest....I cry out with all I have left...I'm worn....My prayers are wearing thin....I’m worn.....Even before the day begins....I’m worn....I’ve lost my will to fight...I’m worn.....So Heaven come and flood my eyes (Worn, Tenth Avenue North).

Worn - Tenth Avenue North Video

How symbolic this music video is for me. If you haven't taken the time to watch this 4 minute video please do. God has given me so much insight to my own struggling journey through this amazing song. I love how they use the "tree of life" which is barren and worn --- all the leaves dead and laying on the ground. In my rendition, Olivia is the tree, seemingly lifeless and consequently fruitless.  As I watch the sun's brilliance shine upon the tree causing the dead leaves to rise as they turn a healthy gorgeous green, I feel as though it's Him rebuilding her "leaf by leaf". While watching the leaves rise, my mind's eye sees an added scene take place behind the blinders of my heart. 

In this scene, God shows me the leaves being blown here and there as they desperately tried to stay on course to their proper home on the branches. As I watched this, I felt the nudge from Him saying that this 'wind" really represents the things that may have delayed His intent for Olivia's life. The wind, which has blown her leaves around, really represents the fear and anger I have entertained, the fighting Marty and I have partaken in, and of course the plan of the enemy's to stop her restoration. Add to this impatience, pride, unforgiveness and, of course, faithlessness. I've always been so focused on "chasing the wind". The wind is fast and that's how I wanted it to be  ----- hurry up, figure it out, move on with life. Unfortunately, in hind sight I now know I was too focused on entering my promise land with the wind instead of chasing His love, His will and His ways.

I want Redemption to win. Most think redemption means "the action of saving or being saved from sin, error, or evil: "God's plans for the redemption of his world"." For me and my purposes, and what I see and feel about redemption lies within a couple other definitions, namely, an act of redeeming or atoning for a fault or mistake or better yet - "Recovery of something". Redeem, Recover, Rebuild the three R's that are on my heart as I write about my hope for my girl.

Olivia is not doing well. Hasn't been for a while. Sometimes as I try to go to sleep at night, I often think to myself, "What is the point of this?" Really, what is the point? Laura kindly reminded me of the meaning of my name: warrior & defender. I have been a warrior, fighting for my baby girl, but what has the fight produced? I will say it again ---- What is the point? I love the three verses she included with the email:

Isaiah 61:3 To all who mourn in Israel, he will give a crown of beauty for ashes, a joyous blessing instead of mourning, festive praise instead of despair. In their righteousness, they will be like great oaks that the Lord has planted for his own glory. 

Isaiah 61:4 They will rebuild the ancient ruins, repairing cities destroyed long ago. They will revive them, though they have been deserted for many generations. 

Isaiah 61: 7 Instead of shame and dishonor, you will enjoy a double share of honor. You will possess a double portion of prosperity in your land, and everlasting joy will be yours. 

I love these words from her ---- "Faith is the "substance" - like actual weight and matter - your faith for Olivia & your family is not wishful thinking, it's faith - which is assurance! You know, that you know, that you know God is bringing healing. You can't not because it feels wrong or off whenever you entertain that because you already have the substance of faith (which is more than hope)."

I started a new study this past January ---- Beth Moore's The Law of Love - Lessons from the pages of Deuteronomy.  Unfortunately, this study started when Olivia was going downhill on the Phenobarbital and consequently, I was unable to participate in the video showings. Even when I did go, I was either late and/or I was so checked out due to Olivia's condition, I wasn't able to "soak" in the truth that Beth is able to deliver so easily. This summer I decided to buy the CD set and I am now doing a private study with this incredible teacher.

I love soaking in her knowledge. Deuteronomy is the inspired word of God, written by Moses. It is about a generation of people who had been in a long-term rebellion. They were the definition of faithlessness and because of their refusal to believe God; an 11 day journey to their promise land took 40 years. Wandering in the wilderness. Sounds familiar. I see now, I personally spent the last 13 years there.

For many the theme of this book is "Remembering what God has done for us in the past - how he brought us through". For the Israelites, the 40 years of desert wandering comes to an end in this 5th book of the Pentateuch (The first 5 books of the bible).

Moses retold the story of the spy mission that originally happened 40 years ago (numbers 13, 14) the spies were sent out determine where they should enter the land that God had given them. 'See, The Lord your God has given you the land. Go up and take possession of it as The Lord, the God of your fathers, told you. Do not be afraid; do not be discouraged.'

But, they were afraid. They grumbled...'the Lord hates us; so He brought is out of Egypt to deliver us into the hands of the Amorites to destroy us. Deuteronomy 1:27   This idea was delivered by the 12 spies - the majority of the spies were afraid of the giants. But there were two spies - Joshua and Caleb - that had a different report. They said the land was fertile - the enemy was vulnerable and God was on their side. When we focus on the negative we become fearful and immobile. We could choose to believe that God has brought us this far, why on earth would he leave us now? God's direction and promises are the positive that we could focus on - it sounds so easy, like a no brainer - but then feelings and negative circumstances enter the picture and we lose direction.

In the Israelites case, God had already promised their victory, fear that He wouldn't pull through left them stuck. They did not remember the signs and wonders they experienced in the wilderness - or the exodus, for that matter. In my situation, I believe the direction for Olivia is the Gaps diet while being supported by the Pfeiffer supplement therapy until the healing takes place. I have read over and over that when we are confronted with these important decisions we need to move out in faith. The stumbling block for me lies not in failing to focus on the positives, rather, trusting that God will overcome the negatives flips me downward. Maybe because there have been so many intense negative situations in such a short time ----- one after another.


This is so hard for me to read. Especially since I am still in my own personal wilderness. It also begs the question - why did Olivia spiral down in 2012?

When I first put her on the GAPS diet, she was doing amazing!!! She gained 10 pounds in 2 months and things finally felt like they were going in the right direction. It was then that we decided to take her off the supplements she was taking from Pfeiffer Treatment Center. Within a month of being off, she crashed and it's been an extremely hard road to get her back on track. Although I received a lot of "opinions" about the supplements and why I was giving her so many, it now appears that they were actually keeping her body stable.

This blog is really about my Wilderness Experience. I am hopeful that as I write you will see me walk into my Promise Land of healing for my girl and our family.

Do you feel as though you have been in the Wilderness lately?

Do you feel God's leading?

Friday, September 18, 2015

Happy Birthday Beautiful!

I am sitting here at the hospital on my sweet girls 17th birthday. What on earth has happened? Never in a million years would have I guessed this is where we would be at this stage of her life. Never.  It is almost as though her life has been suspended in time. The years go by and her generation has grown up, yet she is still in that hedged off space. A place that I haven't been able to reach her. In many ways I am still back here:

Here she is 10, before significant regression. This is before my heart was broken beyond repair. Now, she lay in a hospital bed recovering from what started as an infection and worsened by a bad reaction to a medication. 

As I am sitting here listening to the radio, Morgan Harper Nichol's song Storyteller comes on and tears start flowing down my face. Why? Because I know I need to tell her story.

On a Sunday evening I'm
looking back over all the years
and where I've been
Looking at old photographs
I'm remember
you were right there,
and you have been ever since

With every page that turns
I see your faithfulness

Oh the mountain where I climbed
The valley where I fell
You were there all along
That's the story I'll tell
You brought the pieces together
Made me this storyteller
Now I know it is well, it is well
That's the story I'll tell

There were some nights that felt like
They would last forever
But you kept me breathing
You were with me right then
And all that you have done for me
I could never hold it in
So here's to me telling this story
Over and over again

Take a listen to this wonderful song:

If you are listening to the music I have running, scroll down and hit the pause key so both songs don't play at once. :)