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

Her story briefly -

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

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

Our beautiful girl

Our beautiful girl

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

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

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


Hebrews 11:1 -

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

Have a question or comment for me?

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

Sunday, July 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.

xoxo




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!

xoxo  

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.

xoxoxo


Sunday, April 17, 2016

NOT THIS!

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 .........


UPWARD!












Tuesday, April 12, 2016

How does one Rebuild a brain?

Hi ;) it's been awhile, I know. I am sorry. Please forgive me.





Trying hard to do the above. I've also been feeling a bit whiny.......and did not want to ruin your day. But then, I was thinking how the purpose of my blog is to show you the good....and the bad. To be real. To show the vulnerability of living with and loving someone with a chronic medical condition; all while attempting to keep the faith of restoration that was whispered to my heart 16 years ago. Did I mention it's been 16 years?

The subject that has been burning deep within lately is how to rebuild her brain. I know - crazy, right?Not physically....silly; rather, restoring the cognitive regression to enable her to start learning again. Learning like she did before the damage. With this kind of "crazy thinking" going on, other thoughts begin to race through my mind..... expectations, faith, wishful thinking, reality......or do I need a reality check? It's been over 14 years since I heard her sweet little voice say the very last word she spoke......."Bob". As in Bob the Tomato, a VeggieTale leading character. We were watching her favorite episode as we snuggled in the chair, when Bob came on the scene. She looked up at me with those gorgeous blue eyes, pointed with her chubby little toddler hand and whispered "Bob". Last word. The memory fresh - as if it were yesterday.

Truthfully, Olivia continues to do much better, especially when you compare her life today to her life last summer. Things have been pretty consistent for the last couple months. She has three wonderful, seizure free / walking more independently weeks and then BAM, she has a bad week. Isn't it ironic how definitions of "bad" take on a completely different meaning? Presently, "bad" means 1 or 2 seizures a day for a 5-7 day period. Last summer, "bad" really equalled 10-50+ seizures/day everyday for a week, sometimes weeks. Perspective taking is vital - things are much better. But, I want more..... I want her back.

Rebuilding and restoring is a common practice in many senses of the word. In the alternative health care field, rebuilding your immune system is all the rage; restoring mental health through therapy and lifestyle changes is miraculous, and of course, rebuilding and restoring communities after storm destruction is common place. With Olivia's health slowly returning (she has gained 20 pounds), and her nervous system quieting, the concept and hope for this rebuilding process has become center stage. Most think it's unrealistic - even crazy. But what about Martin Pistorius? You know....the author of the best-selling novel Ghostboy? My previous post tells his miraculous story of restoration with an ending no one would have believed was possible.

Restoration is possible and it happens over and over in the lives of people used by God. One such story that I feel relates to our situation with Olivia is Nehemiah's story. Nehemiah was called by God to reconstruct a damaged wall in Jerusalem. His story is made up of intense opposition, resistance and struggle. Metaphorically speaking, it's a story we can sink our teeth into don't you think? I cannot deny the similarities here. Nehemiah’s call was to reconstruct a physical damaged wall. I feel as though I have been called to reconstruct Olivia's damaged immune system.

With every great story, there is the underdog and an enemy. Sanballat was Nehemiah's biggest opponent, and greatest critic. When Sanballat heard that Nehemiah was attempting to rebuild the wall, he became angry and was greatly incensed. He ridiculed him, doubting his ability to complete an impossible task. His criticism screams "Can they bring the stones back to life from those heaps of rubble—burned as they are?" Nehemiah 4:2.

I actually wrote about this rebuilding process for Olivia back in 2014 in my personal journal. Comparing Olivia's situation to Nehemiah's came to mind after hearing a sermon by Shea Strickland (Under Construction - Opposition - Pastor Shea Strickland) at Hosanna. Shea's words reignited my hope that Olivia could get better. That God calls us to impossible tasks. Tasks that we were never meant to do alone. At the time I heard this sermon, Olivia was unable to sit up by herself, had been hospitalized many times, and even came home on a feeding tube because she was so weak. Restoration looked impossible, and the world view of her situation was depressing and definite.

In Shea's words, "Sanballat is a type of character who reminds us of the devil. He discourages Nehemiah. He accuses him. He has a condemning voice. He points out all the things that are wrong about the mission, that there is too much rubble. Sanballat reminds us of the mess we made, constantly reminding us of our failures and tempts us to fall away. Sanballat is trying to distract Nehemiah from what his is doing. Distract him from the mission at hand. He points out everything that is going wrong with what Nehemiah is trying to do. The rubble represents the stuff that happens in our lives because of our own dumb decisions. All of us have messed up."

Olivia's health became a heap of rubble, and sadly most people do not believe in this kind of restoration. Most "Sanballat" characters think they are doing you a favor --- that they are helping you get a grip on reality. We can all mistakenly take this role if we are not careful. Missions get hard, our hearts give up and cry out things like - "we don't want to watch our daughter suffer anymore and we feel like giving up". Sometimes I simply get weary and the "want" to believe is just too hard. I have failed so miserably with trying this and then that, the "rebuilding" of Olivia seems to have stretched out over too many years, with too many twists and turns for the worst. The enemy sees this weariness and uses it. But I know that this darkness cannot overcome the light and the hope these new pieces offer for Olivia and her recovery. Medicinal Cannabis being the first and desperately needed piece.

For me, I have always tried to focus on what Shea says we can get from opposition. Resistance makes us stronger and walking through those hard times develops perseverance. But, I must admit that I have been swayed momentarily by my Sanballat characters because even though I try to not focus on Olivia's health "mess" instead of the "mission", fear sometimes surrounds me and the rubble is all I see. Nehemiah doesn't choose to focus on the mess; he focuses on the mission. He maintains the right perspective even though Sanballat is pointing out the obvious. It is a big pile of mess. He doesn't have much to work with. Still he knows that if He focuses on the faithfulness of God and he focuses on what he was called to do even with the mess, something great can rise out of the ashes. Shea continues to say that "Nehemiah could have chosen to focus on the rubble, and it would have diminished the faithfulness of God in his own eyes. It would have diminished what God had called him to do in his own eyes. We all have the choice to look at our rubble with God's perspective." For me, sometimes the rebuilding seems impossible and with that focus "God's faithfulness diminishes before my eyes". The temptation is to lose heart and walk away from what God is trying to do in our lives, especially in Olivia's. It can be so hard. Sometimes we are unknowingly used by the enemy.

Nehemiah refuses to be discouraged, even when Sanballat enlists others to convince him to abandon his mission. He focuses on the faithfulness of God. He refuses the invitation to go to the Valley of ONO. He rebuilt the wall in 52 days. Wonder just how long it will take to "rebuild" Olivia's fragile system.

Nehemiah had expectations of God. We need expectations to have faith - right? Because faith is more than wishful thinking. My dream was that the Medicinal Cannabis would provide instantaneous results --- and it has to some degree.......but as you have read I want more ----- I want her back, and time will tell if my wants line up with God's will. I'll be writing a lot about patience. It's on my heart.

So, I continue to trust this unseen path that God seems to be straightening more and more over time. Refining my trusting skills. Laura Daigle penned this incredible song about that very subject.- Trust in You.

Letting go of every single dream
I lay each one down at Your feet
Every moment of my wandering
Never changes what You see

I’ve tried to win this war I confess
My hands are weary I need Your rest
Mighty Warrior, King of the fight
No matter what I face, You’re by my side

When You don’t move the mountains I’m needing You to move
When You don’t part the waters I wish I could walk through
When You don’t give the answers as I cry out to You
I will trust, I will trust, I will trust in You!







Tuesday, January 26, 2016

Are miracles always instantaneous?




I've been thinking about miracles a lot lately. Probably because I am waiting and believing for one.




So many of the stories surrounding Medicinal Cannabis as a medication for uncontrolled seizure disorders use this coveted word. Coveted because parents like me want a part of that miraculous effect. Pretty sure I have never personally known anyone who experienced a miraculous healing. I mean, yes, I know many children who have recovered from Autism through diet and biochemical intervention, but to hear of someone receive healing-----someone who was so utterly fatigued, so utterly incapacitated to the point of being unable to speak, and barely drink and eat ------ suddenly recover ------ to regain normal mental functioning ------ like what I am praying for for my precious girl ---- I have not.

But then, out of the blue, I did. Have you heard Martin Pistorius' miraculous story? He is the author of the International Bestselling book "Ghost Boy".



Today Show Interview with Martin Pistorious

I was so intrigued by his interview, I just had to read his book, and when I did my already God given, strong faith skyrocketed.  When Martin was 12 years old he came home from school one day with a sore throat......and never returned. Over the next year he stopped eating, started sleeping a lot, and said his mind started fading away. He fell in a coma for about 4 years..... and then at 16 his brain started waking up, but no one knew it.  He could not communicate that he was in there.....that he understood everything that was going on. His parents were told he had a degenerative neurological disorder to which the cause and prognosis were unknown. Hmmmm....sounds familiar.

But he was in there. And so is Olivia, I know she is. Martin's story flooded my aching heart with confirmation...just in the nick of time. Not sure if I have mentioned that its been 15 years. 15 years of feeling certain that behind those beautiful blue eyes is my girl....knowing she is in there but living with the daily frustration that I've been unable to help her, despite all the attempts; just like Martin's parents.

Martin and Olivia share some similarities. 1) They were both cognitively and developmentally normal 2) both slowly lost the ability to talk.....and then walk.....and their limbs began to curl inward as their families could only watch as they slipped away 3) Both were treated with medication after medication with no success 4) Test after test were run but they found nothing - with Olivia this included genetic testing.  5) Both went beyond the scope of conventional medical treatments.

Olivia in the early stages of losing the ability to walk. We had to tie her to the chair so she wouldn't fall.


His book shows many pictures of him being tied to his chair.


We started to refer to her hands as "claws" just as Martin talks about.




(All pictures of Martin were taken from his book "Ghostboy")

As I read his words I began to feel as though I was hearing Olivia's voice too.... I am certain she probably feels as he did, for instance he said he felt like "A nothingness that is washed and fed, lifted from wheelchair to bed", or that her ".....body ached, the straps on the wheel chair cuts through to his skin... his body aching as he sits for hours every day. He "longed to be with his family, cherishing every moment with them without them even realizing the conversations he played out in his head......if only he had control of his useless body and silenced voice. 

Martin explained in detail the effect his illness had on their entire family, and while reading his story it soon became my families story as my mind started flipping through hard memories that paralleled their anguish. The fights. The darkness. The hope that resided in one while the other searched for a better place where "professionals" could take care of the child's withering body. It's hard to believe when the world's experts have given the definitive diagnosis and His Hope isn't lodged in your heart. The recurring war that would erupt as desperate hopelessness would fight to no longer witness the deteriorating "shell" that once housed the soul of our loved one. Painful. Achingly real. He explains that while sitting there he knew that it was he who has caused the painful suffering to his family, and after each war was over and the silent calm settled into evening, then bedtime and he's in his bed for another night. These powerful words describe his recurring anguish:

"Suddenly I know that I'm not alone. Reassuring presences are wrapping themselves around me. They comfort me. They want me to follow them. I understand now that there's no reason to stay here. I'm tired of trying to reach the surface.  I want to let go, give myself up to the deep or to the presences that are with me now ---- whichever takes me first. But then one thought fills me: I can't leave my family. They are sad because of me. Their grief is like a shroud that envelops me whenever I break through the surface of the waves. They'll have nothing to grab on to if I leave. I can't go. Breath rushes into my lungs. I open my eyes. I'm alone again. Whatever was with me is gone. Angels. I have decided to stay."

This is one aspect of parenting a chronically ill child that many people do not see. The entire family is affected as the parent's hearts break.....and continue to break. The time it takes to be the child's caregiver is immense with feeding, changing, bathing, all in addition to the emotional heartbreak that is present - especially in his case (and ours), where the child used to be normal.

I was overwhelmed as I read Martin's account of knowing that God was with him as his mind began to "knit" back together. Can you even imagine? Martin had no control over his his body as he lay there, depending on people to meet his every need. He talks at length about feeling thankful that he could control his mind and when the fear and darkness overtook him he could use his mind to retreat to a world of imagination where he was able to lose hours, if not days in order to retain his sanity. True bravery. To remain when life beckons to be over. His face is all I see now when I hear the song "Held" Natalie Grant  - a song about loss, a song about unfairness, a song about God's promise to "hold" us when the "sacred is torn from your life and you survive. This is what it is to be loved and to know that the promise was that when everything fell --- we'd by held".

And God held him. For Martin, God was a constant companion. He could feel Him, and was held for 13 years - 4 years while he laid in a coma, and another 9 years during his mind's restoration. We all need to be held --- don't you think? God holds on to us.....even when we resemble a squirming toddler trying to break free from His strong arms. He holds us as we strive, as we run into brick wall after brick wall. He holds us while we try and figure it out. Reading of Martin's strength and courage has put Olivia's situation in perspective. He held me tight, gently pressing my broken heart back together day after day, seizure after seizure....holding me tight since my fleeting flesh longed to escape the daily suffering I was forced to participate in. That right there is the promise, and humility gladly accepts it.

Martin was the recipient of two miracles. He survived an illness that took him into a coma AND his brain was healed. Neither of these miracles were instantaneous, but took years to come to fruition. This is what I am getting at. The concept of Olivia's healing was a seed planted in my heart 15 long years ago, and I believe it will come to pass, even though the world may see it differently. In Martin's case, no one believed for years until a massage therapist "felt" he was in there as she talked with him during their daily massage sessions. Her belief and determination to help him was the beginning of his freedom.

Medicinal Cannabis is the beginning of Olivia's miracle. Olivia's freedom. She continues to make strides like now being able to walk by herself more and more often:



Of course, there are recordings of instantaneous miracles in the bible (like my favorite --- the epileptic son's miraculous healing by Jesus (Mark 9:14-29)), but God also performed miracles that took days, months...even decades. Consider Abraham and the call on his life. God chose him and promised to make a great nation through him and his descendants. The miracle of becoming a father at 100 years old was actually promised 25 years earlier as he accepted God's calling and set out from Ur. The "father of faith's" journey shows how God gives His miraculous strength to us.... to enable us to persevere through the challenges of even the most difficult calling, like Martin's. Perseverance and the testing of our faith work hand in hand as God uses us in what looks like a "delayed" miracle.

Currently I am doing a bible study that starts at the beginning. Genesis. I have done so many of Beth Moore's recent studies, but this is one of her first - 2005 is the copyright, but perfect timing for me. Studying the Patriarch's of the bible enlightens my faith journey as I get acquainted with the struggles of the early bible greats.

Why do you think God chose Abraham's lineage to build into a 'great nation'? I guess I had never thought of that question, but as you dive into commentaries relating to these early days, the answer is really quite simple......Because he would go. I feel I can relate. My choice to go ahead and run with this crazy healing notion that God planted in my heart 15 years ago is worthy of believing, or going with. Others may have accepted, may have given up, may have gotten too weary or pulled away from the opinions of the masses. I was intrigued to learn that God had called Abraham to leave Ur and head to Canaan, "but when they came to Haran, they settled there."Genesis 11:32

The reason they stopped short of their original destination could be Terah's (Abraham's father) health, the climate or fear. For whatever the reason Abraham's calling came to a temporary halt until Terah died. Questions of our long haul have been circulating in my brain since the beginning, to which Beth answered in one short paragraph. What can "Terah" represent in our journey?

"It becomes us to be very careful as to whom we take with us in our pilgrimage. We may make a fair start from our Ur; but if we take Terah with us, we shall not go far...Let us all beware of that fatal spirit of compromise which tempts us to tarry where beloved ones bid us to stay. "Do not go to extremes," they cry; 'we are willing to accompany you on your pilgrimage, if you will only go as far as Haran...' Ah! This is hard to bear, harder far than outward opposition." F.B. Meyer

God can call a group, a family or even a village for a certain task, but that doesn't mean they will choose to believe in the calling. Believing is hard, and for some it can be impossible, but that does not change the call God may have on your life. That's where perseverance enters in. Love enables us to go to the extremes necessary to move beyond our "Haran". I love how Beth asks "how do we explain our callings to those affected? Especially those who have never met the Caller personally?"

I feel my journey has had different stages, just like Abraham (the first recorded believer). His time in Haran is looked at as a period of transition, which God is famous for. Transitional periods of waiting help us depend on him and trust HIS timing. Can we do His will during those times when it seems like he isn't hearing our cries? Like me, Abraham's journey has its moments of bad decisions made out of fear (telling Pharaoh Sarai is his sister), taking things into their own hands (Hagar and Ishmael) and moments of doubt along the way.

But even with Abraham's mistakes he learns that to move back toward God and His will for his life he needs to retrace his steps, just as I am doing with Olivia and her big neurological puzzle. I sense a hearty laugh as you read this. Even Sarah laughed as God and his companions stood outside her tent talking with her 99 year old husband about Sarah having a baby that very time the following year. She laughed, God heard her. She denied it and he said, "Yes, you did laugh". Genesis 18:15

Is anything too hard for the Lord? Genesis 18:14     Obviously not in Martin Pistorious' case. Can you imagine witnessing Martin's miracle? Like watching it play by play as he first began to recognize and name pictures then use them to finally communicate his wants and needs to his parents. What a thrill that must have been. And to be there as his hand steadied and his vocabulary exploded. I don't want to divulge his entire story otherwise you would miss out on his incredible page turning book (which Hollywood is currently fighting over the movie rights). Not to be missed!

Now imagine. You can be here for Olivia's miracle. You have come this far. How awesome for you to be a witness to a miracle in the making! Think a bit about my favorite instantaneous miracle from the bible (Mark 9:14-29):

14 And when they came to the disciples, they saw a great crowd around them, and scribes arguing with them. 15 And immediately all the crowd, when they saw him, were greatly amazed and ran up to him and greeted him. 16 And he asked them, “What are you arguing about with them?” 17 And someone from the crowd answered him, “Teacher, I brought my son to you, for he has a spirit that makes him mute. 18 And whenever it seizes him, it throws him down, and he foams and grinds his teeth and becomes rigid. So I asked your disciples to cast it out, and they were not able.” 19 And he answered them, “O faithless generation, how long am I to be with you? How long am I to bear with you? Bring him to me.” 20 And they brought the boy to him. And when the spirit saw him, immediately it convulsed the boy, and he fell on the ground and rolled about, foaming at the mouth. 21 And Jesus asked his father, “How long has this been happening to him?” And he said, “From childhood. 22 And it has often cast him into fire and into water, to destroy him. But if you can do anything, have compassion on us and help us.” 23 And Jesus said to him, “‘If you can’! All things are possible for one who believes.” 24 Immediately the father of the child cried out[a] and said, “I believe; help my unbelief!” 25 And when Jesus saw that a crowd came running together, he rebuked the unclean spirit, saying to it, “You mute and deaf spirit, I command you, come out of him and never enter him again.” 26 And after crying out and convulsing him terribly, it came out, and the boy was like a corpse, so that most of them said, “He is dead.” 27 But Jesus took him by the hand and lifted him up, and he arose. 28 And when he had entered the house, his disciples asked him privately, “Why could we not cast it out?” 29 And he said to them, “This kind cannot be driven out by anything but prayer.”[b]


Hebrews 12:1 Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us.

You are the witness' to our story. So, if you feel led, share it. If you are on facebook, like our Community Page - it's under the same name - Restoring Olivia - Facebook

To those who are also on a long difficult journey..........................I'm there too.
I'm there too - Michelle Featherstone

p.s. Spoiler alert!!!! Martin Pistorious is happily married and is a Web Designer! Go God!!!!

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!!!!