Our beautiful girl
Sunday, September 18, 2016
Friday, August 26, 2016
Update on Olivia
Hey. :)
Again, it's been a while. My summer is screaming by (like everyone else) and between necessary house projects and activities for my two other children, my thoughts on Olivia's "summer of weaning" have been swimming around and around in my head, just itching to get out and find their way to you. We had a little bump in the road early in the weaning schedule. As easy as it sounds, it always becomes complex and difficult.
As mentioned in a previous post, we met with a Pharmacogenetics doctor and he performed a couple new blood tests that revealed that Olivia lacks the enzymes necessary to break down the Keppra properly (remember.....I have been saying she can't handle it for years). In a nut shell, because she lacks those enzymes, over time she becomes toxic on the medication and it starts causing problems (in her case, more seizures and a host of other serious side effects). The natural response to this is to just get her off the drug, but going too fast has also caused problems due to her hypersensitivity to change. Believe me, if I could just stop it right now --- today --- I would love to but it's just too abrupt for her sensitive.....complex......fragile nervous system. So, for the time being she will be on some of it until we get her completely weaned off.
Thought I would share a picture of a tile I made with Lauren during Olivia's stay at Children's Hospital this past May. Over the last several years, Lauren's company during long hospital stays has been a much needed respite from the stressful, long days of unsuccessful seizure control. On this particular day, we walked down to the sibling play area for some distraction. Immediately upon arrival, I laid down on a comfy couch as she sat down to participate in the day's art project. But soon, the begging and pleading for me to participate took hold and I found myself digging through jar after jar of fun, colorful accents to glue to the blank tile that was laying out in front of me.
Tired from late night wakings --- I just kind of winged it. As I glance at it today, I realize the symbolism that screams from the artwork I created on that stormy day in May. It conveys the message of our story and my writing on this recovery blog. How is it that I've been able to cultivate this crazy ability to believe in an impossible looking dream?
I feel compelled to inspire you to believe in the miracle of healing, rather than in just instantaneous "miracles". I see my heart, once broken and submerged for over a decade in the deep, dark, murky waters of unrelentless chronic illness; finding it's way to the surface where the light is. At the surface, finally able to see true transformation - like the butterfly emerging from it's chrysalis to find it's new life and much needed freedom.
Does God always want to heal? Is it God's will to heal everyone? Is it His will to heal Olivia? Those are good questions! Gosh dang it! I needed to educate myself on this subject matter because many I have talked with about believing for this healing have asked me if I know if it's God's will. "Why wouldn't it be?", was my immediate, knee jerk reaction. I realize it's been a long time (16 years) and it looks impossible, but can't God make everything possible? Am I too naive? Is my thinking too childlike (wait a second, that's the kind of thinking we need for faith - right)?
This summer I picked a book off my bookshelf that has been sitting there for about 8 years. "Christ the Healer" by F.F Bosworth. A friend gave it to me and I always had the intention of reading it - and I tried, on several occasions. It was written in 1924 and for some reason each time I cracked it open I became distracted and it was soon repositioned on the bookcase during a bi-weekly clearing off of my bedside table.
But now, I am serious. Serious about learning about God's will on healing --- and these are a couple highlights that stuck with me (remember.....I am not a pastor, or a theologian. I'm just a Momma seeking wisdom for the healing of my girl. Seeking. Knocking. Waiting. Wanting to tap into His Ways):
The bible speaks of expectations. Expectations of healing, expectations that become solid after truly believing; but the world only educates on acceptance --- on complacency, or contentment. Those who choose to believe that Jesus' healing days are limited to bible times most often refer to Paul's "Thorn In the Flesh" scripture:
And lest I should be exalted above measure by the abundance of the revelations, a thorn in the flesh was given to me, a messenger of Satan to buffet me, lest I be exalted above measure. Concerning this thing I pleaded with the Lord three times that it might depart from me. And He said to me, “My grace is sufficient for you, for My strength is made perfect in weakness.” Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me. Therefore I take pleasure in infirmities, in reproaches, in needs, in persecutions, in distresses, for Christ’s sake. For when I am weak, then I am strong. 2 Corinthians 12:7-10 New King James Version (NKJV)
Paul asked God to remove his thorn and God said "No" ---- three times --- non the less. Those who believe this line of thinking against the ministry of divine healing ---- against the possibility of miracles --- are of the opinion that "God is the author of disease, and that He has chosen some of the most devout of His children to remain sick and glorify Him by exhibiting fortitude and patience." Did God strike Paul, one of His most humble servants with a sickness and then refuse to heal him? Is the very idea of healing not applicable for our day?
Mr. Bosworth's intense study of the word reveals that in all the instances the word "thorn" is used in the bible, sickness is not the intended meaning. In one, it referred to the Canaanites, for David it was the son's of Belial and for Paul it was the messenger of Satan. Always a person -- never a disease. This phrase really had me thinking ----- "a messenger of Satan to buffet me".
Buffeting. The definition is confirming. Who can't relate to the feeling of being buffeted?
Definition - To strike against or push repeatedly. the action of striking someone or something repeatedly and violently. knock (someone) over or off course.
To strike against forcefully and especially repeatedly; batter: winds that buffeted the tent.
To cause repeated difficulty or harm to (a person or group).
To force one's way with difficulty: a ship buffeting against the wind.
(Of misfortunes or difficulties) afflict or harm (someone) repeatedly over a long period.
_______________________________________
That's it! This explains so much, because how in the world could I be so unlucky...so wrong....so, um fooled. God's will is for Olivia to be healed, but who do I listen to? Unfortunately, for the last 16 years I have chosen to listen to experts who fully admit they do not understand why Olivia is having seizures and why a medication does not work. Her neurologist just confirmed this again at her last appointment. Over a million people live with uncontrolled seizures, and that is just the United States. Why on earth did I continue to listen when time after time, year after year the answer's were just as wrong as they were on day one? I chose to rely on them, even when they have no idea what caused her to disappear behind those beautiful blue eyes.
Several months ago I had one of the most vivid dreams I have had in a very long time. I was dropping my younger daughter (Lauren Faith) off at an ice skating party with friends. As I looked down at her sitting to my left, she was lacing up her skates. In a moments notice, I glanced to the right and the rink had transformed into a huge bay of water with rolling hills surrounding it with thousands of people sitting together talking. Soon, I too was sitting amongst the masses and all of a sudden a huge "Loch Ness type" monster surfaced in the water and instantly locked eyes with me. Before I knew it, his enormous, long neck made its way toward me as Lauren (faith) clung to me.
It was obvious I was his target, and as his huge head came barreling towards me. I stood my ground - but he like, nudged me. Soon, I realized that although intimidating, all this big monster could do to me was this weird nudging thing. He took his nose and came up to me and nudged (buffeted?) me over and over. I felt as though I was in a movie, falling over, holding onto Lauren as he pushed and prodded me across the hill until I finally woke up. It wasn't until I read Mr. Bosworth's book that I realized this was buffeting, and that I have been buffeted for 16 long years.
Buffeting for me (and Olivia) has included......medication failures........broken bones due to falls from seizures....relationship difficulties......wrong decisions........choosing wrong doctors/practitioners....decisions based on fear.....decisions based on untruths and guesses
It's clear that these things were allowed, but somehow I can rest knowing that with God's help, I chose to become stronger through each one of these "distresses and persecutions". It's incredible to pull these pieces together and realize that I am stronger because of the constant nudging and it reinforces my interpretation of this dream that all he could do was nudge me. He could not take me out or destroy me. I'm just too fierce for that.
So, that got me thinking. I'm only fierce because of Him ---- Paul said it, right? "For when I am weak, then I am strong". Did He allow that junk or did I choose it in some weird way because of the choices I made for Olivia's health.....the advice I took from people I trusted, who ended up being wrong....dead wrong on how to build a healthy immune system.
Just like the Israelites, I never questioned my influencers. I blindly trusted them over what God was clearly saying and I wasn't listening because my eyes were focused on them, not Him. Their diagnosis. Their prognosis. Their belief to try the tools from their toolbox over and over again.
God enables me to be fierce for Olivia, because His love for her is for good. Like the song Fierce by Jesus Culture teaches. "He wants to answer, He's relentless in pursuit, He rushes in to meet us wherever we are. How could we be lost when He has called us found?" His Love is fierce, and at the end of the day, we all know that it takes someone strong to make someone strong (Proctor and Gamble Mother's Day campaign slogan).
It is not God's fault when the physical healing doesn't come. It's man's. It's a hard realization. A friend of mine sent me this comment about God's will in healing from Bill Johnson at Bethel Church, California.
"When we submit the things of God to the mind of man, unbelief and religion are the results. When we submit the mind of man to the things of God, we end up with a renewed mind that enhances a life of faith. The mind makes a wonderful servant but a terrible master."
I made choices presented to me from the influencers I chose to have in my life. Choices have consequences that unfortunately need to be played out. I feel it's not a coincidence that I am writing on this subject while weaning her off the Keppra. Things are tough right now. Weaning off anything is difficult with Olivia because she is so hypersensitive to change. I would call it "Metabolic Mayhem". It's also not a coincidence that my beautiful sister sent me this quote along with a birthday wish last week:
Again, it's been a while. My summer is screaming by (like everyone else) and between necessary house projects and activities for my two other children, my thoughts on Olivia's "summer of weaning" have been swimming around and around in my head, just itching to get out and find their way to you. We had a little bump in the road early in the weaning schedule. As easy as it sounds, it always becomes complex and difficult.
As mentioned in a previous post, we met with a Pharmacogenetics doctor and he performed a couple new blood tests that revealed that Olivia lacks the enzymes necessary to break down the Keppra properly (remember.....I have been saying she can't handle it for years). In a nut shell, because she lacks those enzymes, over time she becomes toxic on the medication and it starts causing problems (in her case, more seizures and a host of other serious side effects). The natural response to this is to just get her off the drug, but going too fast has also caused problems due to her hypersensitivity to change. Believe me, if I could just stop it right now --- today --- I would love to but it's just too abrupt for her sensitive.....complex......fragile nervous system. So, for the time being she will be on some of it until we get her completely weaned off.
Thought I would share a picture of a tile I made with Lauren during Olivia's stay at Children's Hospital this past May. Over the last several years, Lauren's company during long hospital stays has been a much needed respite from the stressful, long days of unsuccessful seizure control. On this particular day, we walked down to the sibling play area for some distraction. Immediately upon arrival, I laid down on a comfy couch as she sat down to participate in the day's art project. But soon, the begging and pleading for me to participate took hold and I found myself digging through jar after jar of fun, colorful accents to glue to the blank tile that was laying out in front of me.
Tired from late night wakings --- I just kind of winged it. As I glance at it today, I realize the symbolism that screams from the artwork I created on that stormy day in May. It conveys the message of our story and my writing on this recovery blog. How is it that I've been able to cultivate this crazy ability to believe in an impossible looking dream?
I feel compelled to inspire you to believe in the miracle of healing, rather than in just instantaneous "miracles". I see my heart, once broken and submerged for over a decade in the deep, dark, murky waters of unrelentless chronic illness; finding it's way to the surface where the light is. At the surface, finally able to see true transformation - like the butterfly emerging from it's chrysalis to find it's new life and much needed freedom.
I know what you may be thinking - it all sounds well and good....even inspirational, but when is it going to start happening? You know - the transformation I've been believing for. I can write about faith, belief and healing until the cows come home but when will it start to materialize?
I kind of set you up in the beginning -- right? I told you that by following our journey you could be witness to a healing miracle.....although I did warn you that it may take some time. I kind of look like a failure. No one wants to look like a fool. Believing in the unseen has it's side effects. I mean, yes, we have seen a hint of it. Like a pinch here, a dash there, but nothing sustainable. A couple weeks/month of no seizures and walking on her own and then a tough patch - ugh. Medicinal Cannabis is an amazing start, but I want more. Am I being unreasonable? Is acceptance of her life of suffering more reasonable? More accepted?
Remember this scripture? "Hope deferred makes the heart sick, but a dream fulfilled is a tree of life." Proverbs 13:12 ---- things can appear deferred.
This summer I picked a book off my bookshelf that has been sitting there for about 8 years. "Christ the Healer" by F.F Bosworth. A friend gave it to me and I always had the intention of reading it - and I tried, on several occasions. It was written in 1924 and for some reason each time I cracked it open I became distracted and it was soon repositioned on the bookcase during a bi-weekly clearing off of my bedside table.
But now, I am serious. Serious about learning about God's will on healing --- and these are a couple highlights that stuck with me (remember.....I am not a pastor, or a theologian. I'm just a Momma seeking wisdom for the healing of my girl. Seeking. Knocking. Waiting. Wanting to tap into His Ways):
- God's word is the seed. Until the person seeking healing is sure from God's word that it is God's will to heal him, he is trying to reap a harvest where there is no seed planted. It would be impossible for a farmer to have faith for a harvest before he was sure the seed had been planted. 'He sent His Word: it healed them' (Psalm 107:20) The farmer does not dig up the seed, he trusts the seed will do it's work.
- While on earth Jesus healed them all, not just some. See Luke 4:40, Matthew 4:23-25, Matthew 9:35-36., Matthew 8:16-17, Acts 10:38...I could go on and on. My favorite, however, is Mark 9:14-29 about the epileptic boy whom the disciples could not heal, but Jesus did. I love what Mr. Bosworth says about this scripture I've referred to over and over in my writing. He says, "By healing the epileptic (Mark 9:14-29) Jesus proved it to be the Father's will to heal even this one whom the disciples, divinely commissioned to cast out demons failed to deliver. We see by this verse that it would have been wrong to call in question and to teach God's unwillingness to heal because of this failure on the part of the disciples. Jesus, by healing shows them that the failure proved nothing but unbelief."
- Some think healing only referred to his earthly ministry but the bible clearly teaches that He only began to do and teach....and heal...He continues through the Holy Spirit. "I tell you the truth, anyone who believes in me will do the same works I have done, and even greater works, because I am going to be with the Father." (John 14:12)
The bible speaks of expectations. Expectations of healing, expectations that become solid after truly believing; but the world only educates on acceptance --- on complacency, or contentment. Those who choose to believe that Jesus' healing days are limited to bible times most often refer to Paul's "Thorn In the Flesh" scripture:
And lest I should be exalted above measure by the abundance of the revelations, a thorn in the flesh was given to me, a messenger of Satan to buffet me, lest I be exalted above measure. Concerning this thing I pleaded with the Lord three times that it might depart from me. And He said to me, “My grace is sufficient for you, for My strength is made perfect in weakness.” Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me. Therefore I take pleasure in infirmities, in reproaches, in needs, in persecutions, in distresses, for Christ’s sake. For when I am weak, then I am strong. 2 Corinthians 12:7-10 New King James Version (NKJV)
Paul asked God to remove his thorn and God said "No" ---- three times --- non the less. Those who believe this line of thinking against the ministry of divine healing ---- against the possibility of miracles --- are of the opinion that "God is the author of disease, and that He has chosen some of the most devout of His children to remain sick and glorify Him by exhibiting fortitude and patience." Did God strike Paul, one of His most humble servants with a sickness and then refuse to heal him? Is the very idea of healing not applicable for our day?
Mr. Bosworth's intense study of the word reveals that in all the instances the word "thorn" is used in the bible, sickness is not the intended meaning. In one, it referred to the Canaanites, for David it was the son's of Belial and for Paul it was the messenger of Satan. Always a person -- never a disease. This phrase really had me thinking ----- "a messenger of Satan to buffet me".
Buffeting. The definition is confirming. Who can't relate to the feeling of being buffeted?
To strike against forcefully and especially repeatedly; batter: winds that buffeted the tent.
To cause repeated difficulty or harm to (a person or group).
To force one's way with difficulty: a ship buffeting against the wind.
(Of misfortunes or difficulties) afflict or harm (someone) repeatedly over a long period.
_______________________________________
That's it! This explains so much, because how in the world could I be so unlucky...so wrong....so, um fooled. God's will is for Olivia to be healed, but who do I listen to? Unfortunately, for the last 16 years I have chosen to listen to experts who fully admit they do not understand why Olivia is having seizures and why a medication does not work. Her neurologist just confirmed this again at her last appointment. Over a million people live with uncontrolled seizures, and that is just the United States. Why on earth did I continue to listen when time after time, year after year the answer's were just as wrong as they were on day one? I chose to rely on them, even when they have no idea what caused her to disappear behind those beautiful blue eyes.
Several months ago I had one of the most vivid dreams I have had in a very long time. I was dropping my younger daughter (Lauren Faith) off at an ice skating party with friends. As I looked down at her sitting to my left, she was lacing up her skates. In a moments notice, I glanced to the right and the rink had transformed into a huge bay of water with rolling hills surrounding it with thousands of people sitting together talking. Soon, I too was sitting amongst the masses and all of a sudden a huge "Loch Ness type" monster surfaced in the water and instantly locked eyes with me. Before I knew it, his enormous, long neck made its way toward me as Lauren (faith) clung to me.
It was obvious I was his target, and as his huge head came barreling towards me. I stood my ground - but he like, nudged me. Soon, I realized that although intimidating, all this big monster could do to me was this weird nudging thing. He took his nose and came up to me and nudged (buffeted?) me over and over. I felt as though I was in a movie, falling over, holding onto Lauren as he pushed and prodded me across the hill until I finally woke up. It wasn't until I read Mr. Bosworth's book that I realized this was buffeting, and that I have been buffeted for 16 long years.
Buffeting for me (and Olivia) has included......medication failures........broken bones due to falls from seizures....relationship difficulties......wrong decisions........choosing wrong doctors/practitioners....decisions based on fear.....decisions based on untruths and guesses
It's clear that these things were allowed, but somehow I can rest knowing that with God's help, I chose to become stronger through each one of these "distresses and persecutions". It's incredible to pull these pieces together and realize that I am stronger because of the constant nudging and it reinforces my interpretation of this dream that all he could do was nudge me. He could not take me out or destroy me. I'm just too fierce for that.
So, that got me thinking. I'm only fierce because of Him ---- Paul said it, right? "For when I am weak, then I am strong". Did He allow that junk or did I choose it in some weird way because of the choices I made for Olivia's health.....the advice I took from people I trusted, who ended up being wrong....dead wrong on how to build a healthy immune system.
Just like the Israelites, I never questioned my influencers. I blindly trusted them over what God was clearly saying and I wasn't listening because my eyes were focused on them, not Him. Their diagnosis. Their prognosis. Their belief to try the tools from their toolbox over and over again.
God enables me to be fierce for Olivia, because His love for her is for good. Like the song Fierce by Jesus Culture teaches. "He wants to answer, He's relentless in pursuit, He rushes in to meet us wherever we are. How could we be lost when He has called us found?" His Love is fierce, and at the end of the day, we all know that it takes someone strong to make someone strong (Proctor and Gamble Mother's Day campaign slogan).
It is not God's fault when the physical healing doesn't come. It's man's. It's a hard realization. A friend of mine sent me this comment about God's will in healing from Bill Johnson at Bethel Church, California.
"When we submit the things of God to the mind of man, unbelief and religion are the results. When we submit the mind of man to the things of God, we end up with a renewed mind that enhances a life of faith. The mind makes a wonderful servant but a terrible master."
I made choices presented to me from the influencers I chose to have in my life. Choices have consequences that unfortunately need to be played out. I feel it's not a coincidence that I am writing on this subject while weaning her off the Keppra. Things are tough right now. Weaning off anything is difficult with Olivia because she is so hypersensitive to change. I would call it "Metabolic Mayhem". It's also not a coincidence that my beautiful sister sent me this quote along with a birthday wish last week:
I will begin putting the things I learned in my study of God's will into practice. A big one for me is to stop focusing on her symptoms. Each and every one of those darn seizures are meticulously recorded and fretted over. Renewing of my mind is crucial and shying away from observing those "lying vanities" (symptoms) as Jonah did while lying in the belly of a fish. (Jonah 2:8) I want to be fierce. I want to do as much as I can to align my situation with God's will. I can confidently say Thy Will Be Done Lord.
Sunday, July 3, 2016
Surviving Yet Another Detour to our Promised Land - Keppra drug reaction and weaning.
Are you as upset as I am? Dang it, she was doing so well and then we get thrown off track again. Another detour on our trek to the Promised Land of healing.
Do I sense a snicker? Ha! Yes, despite the long road and the constant "wandering" off course, I still believe she can fully recover. I know ---- for some its painful to witness such faith. I have plenty of people in my life whose body language screams uncomfortableness as I "cling" to something that is an impossibility in their mind. But that's the point. God gives us all faith to believe in the work he's doing in our own lives -- He doesn't necessarily give it to those outside of it. Not to get too offtrack, but what do you think the scene was for Abraham as he met his friends at the watering hole 16 years after his original announcement that he would be a father in his elder years? Did they snicker and whisper to each other as he walked away? I'm sure they thought he had developed some sort of dementia!
I know my story isn't like Abraham's, the grandeur of his promise is too great for words - and my journey. I am just a momma......Standing in front of my God.......Looking for direction on how to heal my girl. I am willing to walk this out with you and share my journey, even if it doesn't make sense. Believe me --- I know it may look impossible. That's why God is in the drivers seat, and this time I cannot skooch him over when the need to control the situation overwhelms me. Trying to control, and actually thinking that I could reminds me of Natalie Grant's incredible song King of the World.
"I tried to fit you in the walls inside my mind, I try to keep you safely in between the lines, I try to put you in the box that I've designed, I try to pull you down so we are eye to eye
When did I forget that you've always been the king of the world?
I try to take life back right out of the hands of the king of the world
How could I make you so small
When you're the one who holds it all
Just a whisper of your voice can tame the seas
So who am I to try to take the lead
Still I run ahead and think I'm strong enough
When you're the one who made me from the dust
This kind of faith is almost childlike - right? Jesus said we need it (Matthew 18:2) and David had it when he defeated Goliath (1Samual 17:37). I was reminded of this "childlike faith" truth while listening to the "Grow Up" sermon series from Hosanna! church. God certainly wants to "grow us up". He wants strong, spiritually mature believers that retain faith that is similar to a child's trust.
My faith has drawn momentum from devotionals like this one from Streams of the Desert':
The "all things" do not always come simply for the asking, for the reason that God is ever seeking to teach us the way of faith, and in our training in the faith life there must be room for the trial of faith, the discipline of faith, the patience of faith, the courage of faith, and often many stages are passed before we really realize what is the end of faith, namely, the victory of faith.
Real moral fibre is developed through discipline of faith. You have made your request of God, but the answer does not come. What are you to do? Keep on believing God's Word; never be moved away from it by what you see or feel, and thus as you stand steady, enlarged power and experience is being developed. The fact of looking at the apparent contradiction as to God's Word and being unmoved from your position of faith make you stronger on every other line. Often God delays purposely, and the delay is just as much an answer to your prayer as is the fulfillment when it comes.
In the lives of all the great Bible characters, God worked this. Abraham, Moses and Elijah were not great in the beginning, but were made great through the discipline of their faith, and only thus were they fitted for the positions to which God had called them. For example, in the case of Joseph whom the Lord was training for the throne of Egypt, we read in the Psalms:
"The word of the Lord tried him." It was not the prison life with its hard beds or poor food that tried him, but it was the word God had spoken into his heart in the early years concerning elevation and honor which were greater than his brethren were to receive; it was this which was ever before him, when every step in his career made it seem more and more impossible of fulfillment, until he was there imprisoned, and all in innocence, while others who were perhaps justly incarcerated, were released, and he was left to languish alone. These were hours that tried his soul, but hours of spiritual growth and development, that, "when his word came" (the word of release), found him fitted for the delicate task of dealing with his wayward brethren, with a love and patience only surpassed by God Himself. No amount of persecution tries like such experiences as these. When God has spoken of His purpose to do, and yet the days go on and He does not do it, that is truly hard; but it is a discipline of faith that will bring us into a knowledge of God which would otherwise be impossible.
I've done several bible studies on the Israelites Wilderness/Promise Land journey and with each one I gain a deeper understanding of just how similar my modern day trek (16 years) is to the 40 year one detailed in the bible. Like them, I have been frustrated, grumbled, complained, struggled with humility, misunderstood His leading and regrettably let fear control my decision making.
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
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
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.
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| 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
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!
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!
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.
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!
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