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.
September 16, 2011
Adding insult to injury...
Tough advocacy issues to battle, tough prayers to pray, tough medical issues to sort through, and tough times to tackle. It sometimes seems too tough for even a tough warrior mom like myself to face.
But I must.
We must persevere, saving the pity-party for another day when there's time for it. And though many may view this as my pity party - it's not. We would do ourselves an injustice to not acknowledge when we're overwhelmed. We portray ourselves as anything but human when we only share the "Don't Worry Be Happy" stuff. Acknowledging the "other" stuff is how we sometimes cope. Not how we complain.
My son Brandon is seventeen years old. Born a happy, healthy child. Apgars 10 and 10. In newborn terms, that means perfect.
Now, today, he is vaccine damaged. Where he did have words as a toddler, he now has none.
Where he was once "a healthy newborn," his formal diagnoses over the years have become words like "non-verbal", "cognitively impaired", "autistic".
As if those weren't enough, after years of chronic diarrhea that the Children's Hospital where I live dismissed as nothing but "autism" -- I finally found a Pediatric Gastroenterology Specialist, from New York - (I live in Houston) - who properly evaluated him, properly scoped him, and properly diagnosed him with words like "colitis" and "inflammatory bowel disease". Real medical words that have very real medical treatments. It was that physician who first gave us new words to add to our vocabulary. Words like "proper diagnosis", "proper treatment", "hope", and the "promise" that in two years time if we did the diet other doctors said was not valid, we would see "healing".
From words we became all too familiar with over the years in the "broken trust"of vaccine policy, politicians who "sell out" to the highest contributor, and pediatricians who "refuse" to see autism as a biological disorder and not merely a mental one, - we could once again let out a breath of relief in savoring words like "promise kept," "integrity," and "truth," in the doctors/researchers who vowed to help my son no matter what the personal cost.
Other words I must experience daily are "atonic seizures," "myoclonic seizures," and "grand-mal seizures." But even among those thousands of seizures he's had over the years, one word has faithfully countered them, defeated them.
God has been the antidote to any and all insults to injury my son has experienced. And he's experienced a lot of them in his sweet, innocent, life. And as much as people like Brian Deer spread lies about how we parents as well as Dr. Wakefield are "wacko," - I will just as passionately share how God is so very true, so very sovereign, so very loving. So very much the only one who gets our family through this "Life with Autism."
In this "autism world" where "medical centers" designed to help instead practice prescription drug dealing more than medicine, and therefore, don't help, us parents have always had at least one person, one clinic, who did help that we could turn to. That is changing. Where "autism centers" that were designed specifically to address the growing epidemic of children with autism once helped, they don't anymore. Now, they only address autism issues to the point their pharma-funders allow. Any brave, courageous, actually-knowledgeable-about-autism physician who dares to actually think outside the box and who actually help uncover a biological basis and medical treatment -- is run off because "there is just no evidence that what they are doing or thinking is valid." It doesn't matter that many children are helped, treated, healed, or dare we say cured, in the process, --- that doesn't matter if someone doesn't like the "process".
Or where that process leads...
Which is were I find myself. Living thirty minutes from three major hospitals, two of them with Children's Hospital's as a specialty. All staffed with the world's bestest and brightest, -- yet I am abandoned. My son abandoned. As an autism advocate who gets dozens of calls or e-mails weekly from parents, parents who ask where to take their child, -- I have no one. No one to refer them to. Even though again, I live thirty minutes from three major Hospitals.
Autism Speaks, where are you in this? Where are your millions that you take from parents who desperately need help and who give you their last dime? Who walk for you, fundraise for you.... turn to you? Where are your offices in each medical center in each state, instead of an uptown office in New York?
Abandoned. That word again. That word that in every Children's Hospital when it comes to their "Autism Clinics" needs to be replaced with "help," "hope," "healing."
That word that is trumped instead in those very Medical Centers, by "cowardice," "money," "politics."
Some days things like that are just too much. Too many children wandering away and drowning because of autism. Too many deaths due to autism, too many divorces due to autism, too much corruption in organizations claiming to speak for those with autism, too many great physicians run off for defying the definition of autism, and too many dadblasted defeats in fighting autism.
But words like "found alive" balance it. And I must cling to that. For every ten Billy's, Bobby's, Michael's, and Matthew's who have wandered off and were found dead in a pool, pond, or river, -- there is a Joshua Robb who was found. Alive.
For every defeat there is a victory.
For every bit of bad news, there is good news.
For every idiotic Pat Robertson pseudo-Christian leader who says it's "Ok" to divorce a spouse who has a disease or disorder or injury that renders them "like a kind of death" --- there is a Joni Erickson Tada whose own marriage assures us of God's Grace, Blessings, and Purpose in sticking with those vows of "for better or for worse". Until "death" do us part. Not until "something like a death" becomes a burden and I'm off the hook.
For every satan's-spawn Paul "Pharma-Proffit" Offit who comes to town for a martini-mixer sponsored by a medical center, there is a group, no matter how small, of warrior moms who will not let that go unnoticed and unchallenged.
When it seems we're losing the battle of autism on all fronts, I must remember these things. That we only truly lose when we stop. That we're not weakened by admitting that our obstacles are heavy, but rather strengthened in allowing others to bear that load with us, if only through prayer.
All summer we've been going through yet another insult to Brandon's vaccine injuries. He had some tests done in seeking to find answers for the relentless seizures, and the results were not good. They didn't indicate anything to shed any light on the seizures, but instead, gave us a new diagnosis to deal with. A degenerative movement disorder that has no real treatment or cure. There are risky medicines to give that might slow progression, but nothing to stop it. But since he's been undiagnosed for so long, the very medication that could slow the progression, could actually cause it to speed up. If I wasn't already stark raving mad at just plain ol' autism, that might have tipped the scale in my sanity being non-recoverable. And while I should be crying at that, I can do nothing but laugh hysterically at the 12 vials of blood so far taken for the different genetic tests being done to figure out what caused that damage. I know why. The multiple vaccinations given while he was sick and on antibiotics damaged his basal ganglia, the part of Brandon's brain that is damaged according to these results. But yet everywhere around me are words like "vaccines are safe," "there is no evidence".
My son is evidence.
My son is the "Canary in the Coalmine" of vaccine policy gone wrong.
And I'll not hide that fact or run from that fact simply because those who caused that fact, are too cowardly to face those facts.
And on the days like lately when that, along with everything else our family is going through, - seems too much, I'll remember the hopeism we all felt when we read about how little Joshua Robb was found.
And out of the past ten or so news reports I've read this year about kids with autism wandering away and found dead, that one boy found alive is all the hope I need to balance what vaccine injury has taken from my son, with all the very good that God has given not only my son and my family, but all those whose lives have been touched by this angel with autism of mine.
I can be mad and hurt and betrayed all over again with this new medical blow my son who already has so very much to deal with, must deal with; - and I could allow it to render me hopeless, but I won't. I will not allow satan's slams to stop me from shouting to my Savior to save my son yet again.
That's simply not what autism moms or dads do.
When our kids or our kids health wander away, we search.
No matter how far. No matter how long. No matter what obstacle.
We search until we find them.
We fight until we recover them.
We never quit.
~ ~ ~
... and much like how so very many children with autism wander off and die, so too it seems has the truth behind the Pharmaceutical/Vaccine industry, the CDC, and our Government in acknowledging the blatant facts before them.
I promise you this Brandon. While you have been injured by vaccine policy gone wrong, I will not allow you to be insulted any longer by their lies and denial.
I will stand for you.
I will speak for you.
I will join others in the Canary Party to share the truth for you.
And the only thing that will drown and die, is the lies of the pathetic profiteering of Pharma.