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.
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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 .........