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?
Saturday, February 4, 2012
Thoughts on Beth Moore JAMES Bible Study
"Consider it a great joy, my brothers, whenever you experience various trials, knowing that the testing of your faith produces endurance. Perseverance must finish it's work so that you may be mature and complete, not lacking anything. If any of you lacks wisdom, he should ask God, who gives generously to all without finding fault, and it will be given to him But when he asks, he must believe and not doubt, because he who doubts is like a wave of the sea, blown and tossed by the wind. That man should not think he will receive anything from the Lord, he is a double minded man, unstable in all he does." James 2-8
Like many people, this page of my bible is dog eared. I have always believed in God, but never took the time to develop a relationship and rely on him - until my life fell apart with Olivia's tragedy. These verses soon became a "battle cry" of sorts. Faith producing perseverance, asking and receiving wisdom....all things a young mom would need to navigate out of the complex mess that fell upon her little babe. But, finally, the "believe and not doubt" portion - now that would become the real challenge.
I know God has provided much wisdom to me, I know because it always makes sense when I look back. I think the unfortunate thing for me, in my situation, is the emotional charge that seemed to dominate my decisions. For 11 years everything seemed so confusing and complex, but then the truth of the damage to her system was finally realized. The explanation fit perfectly, described her to a T, and thereafter became oddly simplified. Simplicity over her severe, complex diagnosis was not only beautiful, but Godly. It just makes sense that her restoration would lie in a modality that allows the system to work "just as it was created to work". I love that! I crave this kind of wisdom that only He can provide.
I have felt like God planted this seed of faith that Olivia will recover, but it has been a long journey to actually believe it intellectually - if that makes sense. So many times I tried to "WILL" her healing into place. I felt compelled to voice it strongly to people, even though my fear constantly diverted me back to what the world sees - a severely handicapped epileptic who's future consisted of an ongoing illness with worsening symptoms. I felt as though God gave me this little morsel of wisdom & truth, that he chose not to give even the closest people in my life (Marty, my mom). I always talk in reference to "when she is better, when she is healed" and most often everyone would get quiet. It was like they didn't want to comment, much less ENCOURAGE that sort of thinking because the evidence (which was Olivia's health) was quite clear - no way was she going to be a normal kid. So, as someone who has tried to 'believe without doubt' as verse 6 says to do, it became increasingly hard to not ride the waves when no one else was seeing my "fantasy". I would say that some people (particularly self-proclaimed Christian types) would try and "talk me out" of my faith for her recovery. I understand that they were just looking out for my best interest, most would explain that they didn't want to see me disappointed. For some, the crystal ball in their hands did not include my dream. When I started my chocolate fast, my mom was like, "Oh Kelly, what if you can never have chocolate again?" It's funny, it really affected me in the beginning, but the more I leaned on and got to know God those opinions seemed to matter less and less.
I feel as though the "double-mindedness" in my situation has also gotten less and less throughout the years, and has been replaced by that genuine faith filled hope that I always longed for in the beginning. I remember looking at Kathy one time as she prayed, thinking how I wished for the peace and assurance that she had. I felt as though I would never get there and ------- here I am (thankfully). It reminds me of the day I called her crying uncontrollably, I repeated over and over "it's just so intense", the fear that is. She assured me that God wants a relationship with me. She said, "He has Olivia's situation under control, what He wants is YOU."
The seed of faith for her restoration...this was completely confirmed through Beth's reference to Matthew 13:11-12 "The knowledge of the secrets of the kingdom of heaven has been given to you but not to them." I look at this verse very personally - That God indeed just gave me this hope for her - me alone. I have finally gotten to the place where I don't need "someone" to concur with me on it - and that is very freeing.
He finally has become my source of stability - even when she goes through a day of 5 seizures (like Friday). No longer do I doubt, my increased understanding of what exactly happened to her provides the explanation and I know it is unfortunately the path to her healing. In those incidences, my patience is the thing that is tested, not so much my faith in what I feel He whispered to me 11 years ago about her life/her destiny.
But the waves are calling my name and they laugh at me
Reminding me of all the times I've tried before and failed
The waves they keep telling me
Time and time again, "Boy (girl), you'll never win."
But the voice of truth tells me a different story
And the voice of truth says "Do not be afraid"
And the voice of truth says "This is for My glory"
Out of all the voices calling out to me
I will choose to listen and believe the voice of TRUTH (CASTING CROWNS-VOICE OF TRUTH)