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 21, 2011
For Susan Dominus of The New York Times
An Autism Awareness Message for reporters like Susan Dominus from The New York Times, who feel they can trivialize anything for a good spin...
The above picture is my son.
I didn't take this picture for the purpose of sharing it anywhere, except for my own personal documentary of my "Life with Autism". The picture was sweet and peaceful to me, taken right after he had yet another chaotic seizure in the tub. I texted that picture to my husband at work so he would know to pray for his sweet son that day.
But in light of the recent story in The New York Times, by Susan Dominus, (read here), I felt this picture would go well with my reply to what she implied.
Apparently my warning to her at the event my Autism organization co-hosted where Dr. Wakefield was a featured presenter, that she quoted, wasn't clear enough. She had come up to me and asked about our "armed guards" and my thoughts of Wakefield's work, and shared that she was following him to do an in-depth article about him... I half-jokingly but totally seriously said, "Great, be nice to him or we will hurt you!".
I was honored to receive a call from her a couple times over the next few weeks asking more about our son and how we came to know of Wakefield, (er, should I now refer to him as: The Autism Guru), and subsequently get treatment for the very things he found in his research, for our son.
But now, sitting here after having read that article, I could very easily have that ruin my day.
But it won't.
It's sad, yes. But not surprising. In fact, thought processes like hers, that I'm sure she felt was good journalism that might earn her an award of some sort, are a dime a dozen, if worth that much.
All one has to do is refer to Brian Deer's "journalism award" for confirmation on that....
Wording something to have readers infer that my son would have miraculously "matured out of" those horrible daily bouts of diarrhea, after a decade of suffering from it already, is not provocative, it's pathetic. And it shows a total lack of knowledge about what Autism is and how it affects a child in so many debilitating ways.
Let's take my son's seizures as another example, Susan, et al.
For oh, the last six years now, he's had Grand Mal, Atonic, Myoclonic, and Absence seizures off and on, occurring in cycles ranging in severity.
This last cycle started in September 2010. It is severe, and hasn't stopped. He's been to the emergency room twice now because they were so bad he was dehydrated from them.
If a doctor actually took the time to relate the cause of those to a viral infection or result of vaccination, and actually found a treatment that helped them, and he recovered, would you as well conclude that he "just matured" out of them? That if I was just patient enough, waited long enough, they would go away?
Like you seemed to imply with the GI Issues he had for a decade?
We haven't been so lucky thus far. No one has helped us determine the cause or potential trigger. No one. And we've tried everything and have seen the best our medical center and insurance can offer us.
So do I just give up Susan?
Do I just take it on your authority that "he will mature out of it"?
Tell me Susan, and all others like you --- when my son was in the tub like he was right before that picture was taken, and went into a Grand Mal seizure, to slip under the water if I wasn't there to potentially drown, what would you have me do? What is your answer?
When would you start giving credit to a man who would dare be different, be brave enough, to help a child like mine no matter how controversial his theory?
It's reporting like yours, that keep children like mine in diapers all their lives, with incredible stomach pain, and dozens of bouts of diarrhea daily.
It's implications like what you wrote, that will keep my family on constant "red-alert" for seizures where we don't know if this one will be the last. When he drowns in the tub in the split second we leave the room. Where he falls down the stairs during a seizure and breaks his neck. When he is laying face down in his bed and has a seizure and suffocates because he can't breathe.
Where he has to lay on the bathroom floor naked because all the strength my aging-self had in lifting up my soaking wet, soapy, 145 pound dead weight son, was spent in just getting him out of the tub and onto that floor where all I could then do was wait until my son came home for lunch to help me get him dressed and on the bed.
Wakefield is not a guru. He is not the leader of some misguided cult. He is not some charming maverick that parents are smitten by.
What he is, is the sacrificial lamb for a group of people with nothing better to do than discredit one of the few physicians/researchers who have ever brought anything useful to the table of autism research. You, the reporters who value their paycheck and career advancement opportunities over daring to sway a story against the tide of mainstream cover-your-ass-at-all-cost politics. The physicians whose very reputations would be ruined if that truth came out. The vaccine manufacturers who would have to find another way to fund their posh paychecks if they were ever held liable for the damage they have done.
Wakefield is simply a man who dared to tell the truth.
Who dared to listen and do something about it when a mother told him her son was in pain and no one else could tell her why or help him.
Wakefield is a man who believes in the Hopeism us parents cling to, because some days that's all there is to cling to...
That belief that through the muck and mire of reporting like yours that we must wade through daily, that Tuscany is indeed out there. We can see it clearly. It is within our reach.
And that someday we too, might actually get to stop fighting for a moment, sit down on our back porch, and enjoy it.
You want to call him something? Call him a brave Knight who was not afraid to have given his life for the cause.
Or in American words, a hero.