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.

March 19, 2011

My Life as a Stark Raving Mad Laughing Lunatic in Love with the Lord

Over the years people have shared with me that I need to write a book.

About what, I'm never quite sure when they suggest that.  To me, this "Life with Autism" blog is my book.  It's a daily reflection. A daily adventure. It's not anything that can be typed as in a "period." "the end." type thing.  No, I'm constantly going back, changing perspectives.  Re-writing that which I once thought was a finished product because of that new perspective, insight, or realization.  The present ever evolving, fluid. Not something I could permanently capture on a page with a perfect "In the beginning" and a "Happily ever after..."

The future not something I am privy to.  Except for the "Happily ever after" part I suppose. As a Christian, I do know the ending thank goodness. And it's a good one. It makes this sometimes anything but fairytale life, worth it.

Yes, I prefer simply sharing about the present. Today's thoughts, if I have any.  Today's mistakes, of which I will no doubt have many.

Today's success of simply surviving it.

I want a book to be something that I look forward to reading each day of my life; not just something I write once, read once, then put away for once and for all.

I think God likes things that way too.  I think it's what he designed the Bible to be...that ultimate book.  That daily inspiration.  Not something to be read once then put away on a shelf to forget about and gather dust forever after.

So I dare not ever try to beat that!

Not that I could if I tried!

However ~

When people mention writing a book to me, I do entertain for a few fleeting moments possible titles.  And the stamina of the editor who would have the monumental task of fixing my run-on sentences, lack of grammar-finesse; and use of periods, comma's, and dashes that would make my English teacher from High School roll over in his grave.

Let's see....

I like "There's Poop Floating in my Tub! ...and other Absurdities of Autism."  Yep, that says it all for our family.  It's been my particular brand of "Life with Autism".  I would so want that to be a coffee-table picture book.  One I would give to those "special" people on my Christmas list.  To do my part in raising awareness that not all autism is:  "Oh....autism... like the movie Rainman?"  And then the ensuing commentary: "What is your son's extraordinary talent?  Music?  Painting?  Memorization?"   I'd have to answer them by saying painting. With poop...his own poop...on the walls...on him...on the bed...  And then I would ask, "Would you like one of his masterpieces for your wall?  I'll sell one to you for the cost of yet another Endoscopy & Colonoscopy."

I'll be sure to send Brian Deer an autographed copy.  Autographed not in ink, but, yes, you guessed it....

And as far as the "other absurdities of autism" go, I think this book would have to be a series.  There are just too many absurdities to explore for just one volume.
It would be more like:
Volume One - exploring the 'WTH' concerning vaccine policy gone bad. I mean mad. I mean both.
Volume Two - exploring the 'Are you kidding me' concerning the mainstream view of treatments.  Or non-treatments I should say. In that they will prescribe and insurance will pay for pills to mask behaviors, but not diagnostics to evaluate and treat the conditions that cause the behaviors.
Volume Three - exploring the 'Have you lost your mind?' of cutting the budget that doesn't adequately fund the disability community in the first place.
Volume Four - exploring the hilarity of the military's most pressing problem being what to do with gays wanting to serve; when at the current rate of the autism explosion, in another generation or two they will have no recruit options but autistics who would rather hum to the engine sounds or line up their bullets in neat rows versus actually being able to hunt down and kill our enemies!

This could go on to infinity, and beyond!

For my friends who have kids with my kid's brand of autism -- my book would have to be the ever unpopular title:   "So your Kid's still got Autism?  What'd you do Wrong? ...and other Guilt Trips Mom's Endure."   No, I definitely wouldn't need to do much research for that book.  I have gone everywhere and tried everything out there. And I've spent everything and more in the process.  And while many things did help, not anything recovered or cured my son.  Finally, I had to decide that for me, and for our family's future, I had to make the decision that I would not continue to paddle a rowboat across the ocean and mortgage my house another three times to chase after yet another doctor, in yet another city, to fund yet another therapy, - even if that might be the one that "cures" my severely autistic son.  Hence the guilt trip sub-title.  If I tried all those things and they didn't work, I must not have tried them hard enough or long enough.  I must not have done them right.  I must be like the refrigerator mothers of long ago who were thought to just not care enough. Oh I know the critics would have a field day with that book.  As parents we are to go to the ends of the earth for our children, and spend whatever we must to help them.  I do believe that.  Within reason. But when it takes everything out of balance as it had in our lives, and interferes with the faith of a perfect God who designs perfectly, - then maybe worldly imperfections are a part of that perfect plan for whatever reason, and whatever I do, however much I spend, will never ever be enough....

Knowing that, accepting that (dare I use that term) does not mean that we give up in any way, shape, or form. It means for us, that within reason and within our financial means, we will do all we can.  Our son is recovered in a few areas, constantly improving in other areas, and yes, is still severely autistic in most areas. We do what we can and trust God to do what we can't. And live guilt-free and at peace with that.

Or maybe this book that is already creating firestorms over current claims of recovery:  "Cured, ...does it mean your Kid wasn't Autistic enough in the First Place?   My personal jury is still out on that one.  I do know many friends' children with autism who have overcome so very many challenging aspects of autism. I rejoice with them. But with autism being such a spectrum, it's hard to define what severity of autism in the first place, would qualify for being "cured" of autism.  And I do know many who claim their child was cured, who I would question the degree of their child's autism or asperger'ish-ness in the first place.  Either way, I don't want to sit on the jury panel for that book review.  I do believe in recovery from many of the biological aspects of autism. Gastrointestinal issues, allergy issues, immune issues, behavioral issues....  And I will say that definitely in this day and age especially, there is much hopeism to be had in allowing those affected by autism, to have many of those symptoms relieved or recovered from, no matter how "severe" the autism was in the first place.

Which leads me to the last book title I would come up with in those fleeting moments of book signings, royalties, and a life of ease from the fame and fortune that would follow...

"To Cure or not to Cure?  ...conversations with my Creator"  This book is one I've been researching for years now and the theme of many of my writings.  It's one such book that I've re-written many, many times already. It's a book where if I had penned it those first few years of "Life with Autism", I would have definitely said "Cure!"  Autism was so very bleak and devastating to us then. We saw absolutely no good ever coming from it and just wanted it gone from our lives. We wanted to wake from that nightmare knowing it was indeed, only a nightmare.  But one where gradually it got better. We saw less bad and more good.  We worked like crazy for even more and more good, but in the process of trying to change our son, 'cure' our son, we found that we were the ones experiencing the healing.  We were shaped.  We were molded. Everyone around us because of Brandon, forever changed for the better.

It's hard to say that if God were a genie in a bottle and I could rub his belly and be granted only one wish, that it would be to totally cure Brandon and make him the child we dreamed of before autism.  I just don't know! The things that biologically hinder him and prevent him from living a life of the highest expectations possible for him, yes. Cure those things!  But to totally make him a different person, a 'perfect' person, - well, isn't that going against the very things I stand for as an advocate?  In accepting people for who they are?  Isn't that going against the very things I stand for as a Christian in not judging others by implying they are broken and need to be fixed?  Is by doing that saying that God is not a Sovereign God and doesn't in fact, know what he's doing?  I mean, God is God.  He can cure my son, but for whatever reason, chose not to as of this writing.

There is only Psalm 139 for me to understand about my son.  Perfectness, potential, planning, purpose, and future prosperity. There is no need for me to ponder beyond that.

So at the risk of further controversy, I would have to say no.  For us, autism is who Brandon is, and it's made us as his family, who we are.  Brandon's imperfections have been the most perfect thing that has ever happened to any of us.

Either way, I could never end that book. This particular conversation with my creator will not ever be over until I'm standing before him, asking him about the "What the heck were you thinking with this autism-thing" in person.

And God indeed knows, I would ask it like that.

So you see, I could never write a book. More than coming up with something about autism people don't already know or live with, I could never decide what to call it!  And based on my above commentaries, it would be much too controversial, sarcastic, and personal,  for anyone but me!

Instead, I'll stick to blogging about it on the days I can actually get around to doing it.  Sharing the good, the bad, and the extremely ugly.  The lightheartedness, laughter, and lunacy.  And the love of my Lord that I must cling to daily, if I'm indeed to survive this life with autism!

Who knows, maybe after I'm dead someone could compile them all in a true autobiography. I'd like it titled:  "My Life as a Stark-Raving-Mad-Laughing-Lunatic-who-Loved-the-Lord."

And besides, just like a line in a song implies, right now while I'm alive, it's only:  "A penny for my thoughts..."

But much later after I die at around 200 years old (mom's of kids with autism like my kid's autism understand that age thing) it'll be:  "... Oh no, I'll sell 'em for a dollar. They're worth so much more after I'm a goner!"

Maybe then my typical son who we could never save college money for because of autism, could use that money to indeed graduate from college one day!

So you see, it's pure strategy why I don't write a book now!


1 comment:

TonGa :) said...

Yes, you are stark raving mad! That's why I love you so much darling! :)

I'm thankful that, as your friend, I get to read your heart and humor...for free! I just wish that you could get paid for it! Maybe then we could meet for lunch and you could pay!!!! Yes, I've given it away that I'm one of your friends that's just dying for you to write a book! I'm your journal and facebook stalking friend! But who could blame me?!?

Where else can you get a book or movie for that matter that causes you to snot bawl AND blow coffee out of your nose due to deep diaphragm laughter?! You just can't BUY that sort of marvelous from a store shelf!


Now where's that book...I'll wrap a hundred to give as gifts!