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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Monday, September 19, 2016
Olivia is excited to show what she's been able to do consistently for a while! Just in time for her Golden Birthday - 18!!
Never once, had it occurred to me as I laid my eyes on my golden-haired blue eyed baby girl, that I would be changing her diaper and helping her out of her "crib" on the morning of her 18th birthday. She was perfect.
All morning I have oscillated between scores of emotions as I consider that she is now a young adult. Gone are her childhood years. Over. Never will she take part in the things of childhood that each and every mother swoons over as her little cherub's age. I think it may be harder because she did develop normally until 2. I got to witness her emerging personality. The silliness, the stubbornness and of course her sweet soft voice. She was incredibly smart. I remember once when she was 7-months old and we were in the kitchen. I asked her "Where's your nuky?" She immediately worked her way out of my arms and crawled to the other side of the house to her room. Once in her room, she crawled under her crib and came out from under with her nuk in her mouth! Smiling ear to ear. So proud of herself! I was amazed!!
Thankfully I was able to witness the sweetness of her as a toddler, but then she was gone. It's hard to not mourn that she was now a shell. She had withdrawn into a sea of neurological mayhem. Silent and suffering with daily seizures.
I completely missed out on the innocence of a 4-year old learning the first shreds of independence, silent to toddler church favorites like "Jesus Loves Me". Fabricated memories are all I have of her turning 6.......imagining her to be wide-eyed with excitement over her first tooth fairy visit or the belief in Santa and his reindeers and elves. I'll never forget that first Christmas as Marty and I lay next to each other, completely numb.....completely silent as the tears streamed down our faces in the dark of the night.
No longer can I think about the hilarity and confusion of being a tween girl and the coming of age as a teenager, with each and every milestone on the way. The first crush. Confirmation. The driver's license. First dance. Prom. Graduation. It's over and there is no getting it back for her. There is immense emotional loss when you lose your child to Autism and neurological disfunction.
But here's the good news. We're on a different path. A straightened one. One that honors faith instead of long hours of labor. Wisdom has spoken and several new pieces of Olivia's puzzle have been revealed.....as promised.
I refuse to mourn her lost childhood years any longer because the hope that resides in me now fuels my passion for the new milestones Olivia will conquer. For those who follow my blog...... remember my last post? I dived in head first to discover the Will of God on healing. With that information I started taking different steps; seeking wisdom from other experts.
And this is where the healing begins. Remember the story of the three lame men that Jesus and his disciples healed in the bible? Here's a refresher:
Jesus Heals a Lame Man
Afterward Jesus returned to Jerusalem for one of the Jewish holy days. Inside the city, near the Sheep Gate, was the pool of Bethesda,[a] with five covered porches. Crowds of sick people—blind, lame, or paralyzed—lay on the porches. One of the men lying there had been sick for thirty-eight years. When Jesus saw him and knew he had been ill for a long time, he asked him, “Would you like to get well?” “I can’t, sir,” the sick man said, “for I have no one to put me into the pool when the water bubbles up. Someone else always gets there ahead of me.” Jesus told him, “Stand up, pick up your mat, and walk!” Instantly, the man was healed! He rolled up his sleeping mat and began walking! John 5:1-9
A Lame Man Healed
Now Peter and John went up together to the temple at the hour of prayer, the ninth hour. And a certain man lame from his mother’s womb was carried, whom they laid daily at the gate of the temple which is called Beautiful, to ask alms from those who entered the temple; who, seeing Peter and John about to go into the temple, asked for alms. And fixing his eyes on him, with John, Peter said, “Look at us.” So he gave them his attention, expecting to receive something from them. Then Peter said, “Silver and gold I do not have, but what I do have I give you: In the name of Jesus Christ of Nazareth, rise up and walk.” And he took him by the right hand and lifted him up, and immediately his feet and ankle bones received strength. So he, leaping up, stood and walked and entered the temple with them—walking, leaping, and praising God. And all the people saw him walking and praising God. Then they knew that it was he who sat begging alms at the Beautiful Gate of the temple; and they were filled with wonder and amazement at what had happened to him. Acts 3:2-10
Jesus Heals a Paralyzed Man
When Jesus returned to Capernaum several days later, the news spread quickly that he was back home. Soon the house where he was staying was so packed with visitors that there was no more room, even outside the door. While he was preaching God’s word to them, four men arrived carrying a paralyzed man on a mat. They couldn’t bring him to Jesus because of the crowd, so they dug a hole through the roof above his head. Then they lowered the man on his mat, right down in front of Jesus. Seeing their faith, Jesus said to the paralyzed man, “My child, your sins are forgiven.”But some of the teachers of religious law who were sitting there thought to themselves, “What is he saying? This is blasphemy! Only God can forgive sins!”
Jesus knew immediately what they were thinking, so he asked them, “Why do you question this in your hearts? Is it easier to say to the paralyzed man ‘Your sins are forgiven,’ or ‘Stand up, pick up your mat, and walk’? So I will prove to you that the Son of Man[a] has the authority on earth to forgive sins.” Then Jesus turned to the paralyzed man and said, “Stand up, pick up your mat, and go home!” And the man jumped up, grabbed his mat, and walked out through the stunned onlookers. They were all amazed and praised God, exclaiming, “We’ve never seen anything like this before!” Mark 2:1-12
And, of course, my absolute favorite:
When Jesus saw that a crowd was running to the scene, he rebuked the impure spirit. “You deaf and mute spirit,” he said, “I command you, come out of him and never enter him again.”The spirit shrieked, convulsed him violently and came out. The boy looked so much like a corpse that many said, “He’s dead.” But Jesus took him by the hand and lifted him to his feet, and he stood up. After Jesus had gone indoors, his disciples asked him privately, “Why couldn’t we drive it out?”He replied, “This kind can come out only by prayer. Mark 9:25-29
Stand up Olivia, and leave that chair!
Her strength and endurance has gained momentum over the last several weeks. As of this writing she still needs the chair for safety, but my hope is that it will soon be parked in the corner and some day out the door! This video was taken on her birthday (yesterday), and she was walking in the back yard for about an hour. She just loved her new found freedom!! To be honest, she still has some bad days with seizures but they seem to be getting fewer and far between.
Faithful readers! God is Faithful. Even to those of us that have been waiting for years and years. Remember this post from September 21, 2015? Olivia had been in the hospital for 10 days and I was completely worn!
Just one year later and I am finally on the right path! It reminds me of the Beth Moore Deuteronomy study I did in 2013. One of the main goals in her series was to help people "regain their vision", or in my case - "discover her puzzle pieces", what went wrong and what are the pieces I need to get her on the road to health again? I've seen a lot of smart doctors (both conventional and alternative) and they haven't been able to figure it out. Beth shows the word "See" being used 29 times in the book of Deuteronomy. He wants to point us in the right direction.
"See, I have set the land before you. Go in and take possession of the land that the LORD swore to your fathers, to Abraham, to Isaac, and to Jacob, to give to them and to their offspring after them." Deuteronomy 1:8
He humbles me. His willingness to hold on tight encourages me. He has never given up on me and my fight for her. The true revelation He has for me comes as I watch Tenth Avenue North "Worn" video one more time.
As my eyes are glued to the screen, and I am belting out the memorized lyrics, He grants me the vision of a lifetime ---- the green leaves, which previously were brown, as they float upward toward the branches turn into puzzle pieces. As they rise, they are Meticulously joined together. He grants me the sweet vision of running toward the base of the tree where He is waiting. In no time flat, I am in His amazing strong arm as He points up to the puzzle pieces in flight, as they move to be joined. I look down his arm, to the end of His index finger and there is the tapestry of Olivia's life as a completed puzzle. This time, with my soul quieted, I am able to hear Him whisper, "See......See".
I have no words. Just tears of joy. OYYY!!ReplyDelete