Olivia's journey has been rough - to say the least. Born perfectly healthy, her declining health has always been called a mystery. Fifteen years have come and gone, with no change to the daily seizures that have held our hearts hostage..... until now. Finding HOPE and healing for our girl began with the introduction of Medicinal Cannabis - A controversial treatment for untreatable seizure disorders.
Her story briefly -
At 18-months she developed little "shaking spells" in the middle of the night. Olivia's journey has been rough - to say the least. Born perfectly healthy, her declining health has always been called a mystery. Fifteen years have come and gone, with no change to the daily seizures that have held our hearts hostage..... until now. Finding HOPE and healing for our girl began with the introduction of Medicinal Cannabis - A controversial treatment for untreatable seizure disorders.The Neurologist called them "Generalized Myoclonic Seizures". In many cases this can be the beginning of a degenerative condition, but month after month Olivia “defied” this inaccurate diagnosis by continuing to develop normally. Several months later, after a medical procedure, the little "shakes" became large jerks that would catapult her to the floor. She stopped talking, stopped responding to our voice and appeared have entered her own little world. The seizures continued to change. They soon became "drop" seizures and would come on with no warning and she would fall or crash into whatever was in front or below her. They continued to worsen into classic tonic clonic seizures that would last anywhere between 40 to 90 seconds.
Complexity was the word often used to describe Olivia's condition. We've done our due diligence.....we tried all the medications, none worked. We tried the supplement route through a well-known clinic in Chicago. We then tried the Specific Carbohydrate Diet (SCD), to which the Gut and Psychology Syndrome (GAPS) diet is developed from. We saw such amazing results from this diet we decided to take her off the many supplements she was taking because we didn't think she needed them. Well, we were wrong, and she crashed. Apparently, the supplements were helping her --- it was not a coincidence. It made sense that to get her back (at least to the place before pulling the supplements away), we should just put her back on the supplements -- but it didn't happen that way. The complexity often used to describe her was now ten fold, any change we made "upset" her fragile hypersensitivity to change and her path became even more confusing and "crooked". The Medicinal Cannabis has finally given us a mechanism to control the extreme Neurological Inflammation racing through her little body -- something every anticonvulsant medication failed to deliver on.
Our beautiful girl
As a parent to a severely autistic child who has daily uncontrolled seizures, the memory of her being "normal" has never been forgotten. The hope of helping, if not stopping her daily suffering has been an uphill journey. Approaching her situation from a diet perspective is not an entirely new idea. Olivia was on a version of the SCD diet in 2005 with some success because I never introduced the homemade yogurt, which is the main healing modality. The main difference between then and now is the knowledge base of Dr. McBride and her ability to share the wealth of information she personally gathered as she cured her own severely autistic child with the SCD diet.
I do respect and am thankful for the excellent emergency practices of the conventional medical institution. Their services have literally saved Olivia's life on numerous occasions. Alternative care has taught me so much about the power of your own immune system, and the tragedy that can follow when the immune system is damaged. Why these two worlds can't work together to shape and protect us all is a shame.
This blog is really about our journey over the last 15 years. Although the focus is Olivia and her recovery, I will also include how this has affected our whole family and how we have dealt with this unexpected interruption in our lives.
Hebrews 11:1 -
Now faith is confidence in what we hope for and assurance about what we do not see.
Have a question or comment for me?
Sunday, April 17, 2016
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 .........
Tuesday, April 12, 2016
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!