On being forged into a warrior mom
If I could summarize our journey from Hell to HOPEISM, it would be in my faith, which I call HOPEISM. It has been my weapon of choice to get me through each battle I have had to fight in my mission to win our war called life with autism and seizures. Vaccine injury to be more specific. It would also be in committing to heart, soul, & mind the words and motto's from Forged, NDCQ, the Lone Survivor, and Levi Lusko in his book, "Through the Eyes of a Lion." I will be forever grateful to the inspiration, encouragement, and mental fortitude found through all of them collectively. Because of that, I am not allowing this tragedy of vaccine injury that has come into our lives to be an obstacle to being used by God. I am instead turning it into an opportunity to be used like never before!
This blog is dedicated to Brandon. His life has been forged by difficulty, obstacles, & all too often because of seizures - pain, blood, broken teeth, & broken bones. Yet through all that he has shown such fortitude. The bravery, strength, & resilience of a true warrior. He taught me that having strength through adversity means that even if you lose every battle, like the Lone Survivor, you never quit fighting until you win the war. That in the words of "NDCQ," you keep "dreaming," keep "daring," & keep "doing." As Team Guppy has yet to be able to escape vaccine injury, we have no choice but to as Levi Lusko writes, "Run toward the Roar." God has indeed given us such incredible power in enduring such impossible pain.
Some days the HOPEISM in that simply takes my breath away.
April 27, 2013
Autism's Swan Song
It was an ending of sorts. Brandon's last office visit with our longtime Pediatrician. He's the only Pediatrician Brandon has ever had. He walked in the exam room and said with a smile, "So, this is our Swan Song...." I remember thinking how odd that was for him to say that. We've had a love/hate relationship the entire time. He loved vaccinations, I hated them. We would banter back and forth with our facts. Well, his fantasies and my facts. But, he was nice, he did what I asked of him in terms of paperwork for Brandon, and my other son liked him, so we stuck it out. No sense breaking in new ones all the time. Especially since they're all bound by the same Pharma-brainwashing. While he would begrudgingly order some tests for my "wild goose chases" and "quackery" as I'm sure he called them; I can honestly say that as far as autism, he never did a thing for my son. So how can one have a 'Swan Song' to a dance that was never danced? How can you have an ending to something where there was never a beginning?
There lies the root of our autism travesty. At least mine. And it's why I have hated every single autism month anything I have seen. Like my Pediatrician, autism organizations and agencies make it out to be this great Swan Song - this great finale to the hallucination that anything of use has been done for the rampant epidemic called autism. This great ending to an autism treatment performance that has been non-existent at best. To the healing that for most is out of reach. To services, supports, and respite that has yet to be offered.
Sharing facts about autism awareness, pumping people up about it, encouraging them through it, - posting perfect pictures about it -- that's not what this month is about.
Finally, I had the chance to experience what this month is about. In finding a doctor who is educated on the latest treatments autism has to offer. In dusting off their biochemistry book in going back to the beginning of medicine in understanding how the cells work. In finding a doctor whose focus is more on what the body says to do, and less on what traditional texbook or HMO protocol dictates doing. This doctor goes where the path leads whether it makes sense according to typical manifestations or not. This doctor listens, treats, and as we've experienced this month --- helps to heal.
And is healing.
Brandon has been seizure-free since April 5th.
Something all the traditional medical professionals in the world-class medical center thirty minutes from my house has failed to do for my son's nineteen year career with autism. For his decade-long struggle with seizure cycles. For this latest three year relentlessly devastating seizure cycle.
Even with all the drugs Pharma can push.
There's your swan song, Mr. Pediatrician.
Brandon deserves to sing it, not you.
That doctor earned it, not you nor any of the myriad of neurologists or specialists we've seen in that medical center for years upon years.
As Randy on American Idol would say, "Yo Dawg, this doctor -- this doctor IS IN IT TO WIN IT for us!"
That's what this month should look like.
That's where the HOPEISM of this month should come from.
From real doctors practicing real medicine for real healing.
Yet sadly, as long as I have to drive sixteen hours away for the rare doctor who understands autism, we haven't accomplished a thing for autism awareness, let alone autism action.
As long as the underground autism treatment network is stronger than the traditional medical one - where parents desperately e-mail each other asking where they got this, how do you treat that, what state must I travel to now to get help for my child -- we haven't accomplished a thing.
Twice now this month I have had to go back to our traditional doctors. The Neurologist to check the settings on Brandon's VNS, and the Pediatrician for a physical to get paperwork signed. I briefly shared about our seizure-free streak with each of them and what I felt was contributing to it. The treatment of underlying chronic conditions, and natural supplements other than Pharma's seizure-drugs. They both looked at me with less than enthusiastic expressions. Oh, they were happy for me, but there was no A'HA intrigue in where they ask questions so they can possibly apply that information to other such patients. There was no invitation to share our success with others in a "Grand Rounds" type educational setting. Most dishearteningly, I could see no "blue light" going off in their head in that maybe they needed to look at autism a bit different. Look at lab tests a bit differently. From each of them there was only, "Do you need refills on anything?" For me there was only the horrifying thought as I drove home, "Did my son even need that Neurosurgery, that VNS implanted in his body?"
The answer is no. Not if I had found this doctor, before that surgery.
That was the moment I realized just how little the medical establishment understands about autism.
That was the moment I realized just how miserably we are failing at this month of autism unawareness and inaction.
As this month comes to a close, and that "Pediatrics" chapter comes to a close, Brandon sang his own Swan Song. For the first time in the eighteen years of that Pediatrician trying to stick the ear thing in his ears to check them, he didn't kick, punch, scratch, scream, or require three of us to hold his arms and head still. He didn't render the Pediatrician infertile for life. No, because of the help and healing of a real doctor we've only seen for barely two months now, Brandon sat there and let a stunned Pediatrician check his ears.
While I sang mine in declining for the last time, his recommended vaccinations.
And I hope...
Oh how I hope with the Hopeism of all Hopeism - that come May 1st, we can finally begin the work of educating those who need it most -- each and every doctor -- in each and every medical center, about the real treatment of the myriad of disorders and dysfunctions called autism.
So that next April --- can be every parents autism swan song.