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 11, 2013

Of comfort zones, common ground, and conquering fears.

I learned something about my son this month.  Just how much joy and happiness jumping on the trampoline brings him.  I could always see it in his face, the joy, the happiness --- in how his whole body comes alive.  I could see when he jumps, that there's no autism.  No seizures.  No GI Disease.  No mitochondrial dysfunction draining his energy.

I could always see that - but I could never feel the freedom he was feeling.

Until lately.

I should first further my transparency in sharing that I have a few sensory issues.  Fear issues.  I mean, when it comes to anything autism-related -- I'm a fearless autism warrior mom.  I've been to Washington, D.C.   I've been labeled a "riot risk" - I guess was the term the Capitol police really meant to say - when they wouldn't let me in the Rayburn Building while wearing my "My Kid Got Autism From a Vaccine" t-shirt.  I've testified in Austin in front of Legislators.  I've taken on a school district (and won) and I've at times been the last appeal letter standing in simply wearing out insurance claims managers until they just pay the thing so I quit appealing.  I have taken on doctors, I've been on T.V., and I've been in the newspapers. 

I've lived a fearless autism advocacy life.

But personally?  Not really so much.

Until recently.

My own eyes were opened from a situation where people refused to step outside their comfort zones.  I realized I didn't want to be like that.  That even though there are very severe limits to what my husband and I can do -- we should still always attempt to do.  And not make excuses.

So I decided that if we ever get a chance to go on a vacation in the future, it would be nice to have a Dive Certification.  Our son Matthew does, so I figured that would be something we could all do together.  If not the opportunity for me to join them, then at least it would be something neat that father/son can do.  We've had so few of those opportunities in our life.

Talk about wayyy out of your comfort zone -- Todd took the class first.  It would seem that as "Guppy's" swimming would come second nature.  But for Todd Guppy -- not so much.  He was a Football player in High School and College.  Big, muscular-built football players typically don't swim.  They sink.  So much so that if sinking to the bottom of the pool were an Olympic event, he would be your Michael Phelps.  Oh, he can swim -- when jumping off a cliff into the water below, he can swim to get to where he needs to get back out to climb back up the cliff to jump off and defy death again.  But recreational swimming or competitive swimming like our son Matthew did, -- not so much his forte.

While he was taking the classes, I could tell, and he could tell, - that this was way out of his comfort zone.  But I was so proud of him for doing it.  And he was so proud that he did.  Like me, he didn't want to be like those who refuse to do something out of their comfort zone.  He didn't want to grow old and complacent. 

You stay young by constantly stepping out of your comfort zone.  And for autism parents like us, we must do all we can in finding that fountain of youth to live forever!

You can't grow as a person when confined in a comfort zone.

I wish doctors of today understood that.  The future of our children with autism depends on them being brave like my husband was in stepping way of their comfort zone.  Learning new things in this new biological disorder called autism.

I knew the challenges Todd had to overcome in doing that class - and when it was all said and done and he had his Open Water Diver Certification -- I asked him if he was glad he did it.  He was.  He actually wants to go do that for fun now.

Which brings me to my turn......  My fears...........   I am a true "Guppy" in that I love the water.  I love being in it and I love swimming in it.  I love the thought of being underwater and seeing a whole new world.

But I have sensory issues with things touching my head -- goggles, mask, etc.  With my face being in the water.

And I have never swam a true swim-stroke in my life. 

I know how to swim.  Well, let's just say that I know how to get from point A to point B in the water.  But like Todd, I have never taken any proper swim lessons to learn how to swim each stroke.  Which is probably why I was so insistent on Matthew taking lessons and being on swim team. 

I would go to the pool and do laps, but it was always using a kickboard.  Alternating swimming with my arms or my legs.  Rarely both at the same time. And never with my head in the water.  But knowing that with this Dive class I vowed to take, my bluff was close to being called.  I would have to swim a certain distance, without my beloved kick-board as my crutch.

And I would have to put my face in the water!

Under water.

With a mask on.

I gotta say, I understand now why doctors don't get out of their comfort zone when it comes to autism and realizing that indeed, gut issues could be related to brain issues.  That biological disorders could cause behavioral manifestations.   It's scary to get on those starting blocks and stare down at that water and have to jump in head first!

But we must if we are to grow.  Overcome.

And so I did.

I left my fear, and my kickboard, behind.

I swam one lap freestyle.  One lap breaststroke.  One lap butterfly.  One lap backstroke.   Albeit with my head out of the water, but I did it.  No kickboard.

It felt wonderful.

It was hard.  I was sore.  But I did it.

I remembered watching Matthew swim all those strokes at all those swim meets all those years, and I just pictured how Matt swam each stroke as I was swimming.  I've watched so many swim meets of his, that the form, the style, the technique is ingrained in my brain.  No matter how ugly I'm doing the stroke, I at least know how to do it.  Whether my arms and legs follow suit or not.  Perhaps one day what I do will somewhat match how he did it!

I realized so much about myself through this process - but even more, I realized so much more about my son Brandon and how he must systematically do things.  How many individual things he must overcome to be able to do the slightest thing.  Learn the slightest skill.

I am sure that his "want" to do something is as great as my fear was in doing something.  And that breaks my heart for his autism all over again.  How many things could there be that he wants to do but can't because of very real medical dysfunctions holding him back.

And here I was perfectly capable to do something all these years, but never did for fear of fear.

Shame on me.

Never again.

Autism Awareness month totally blows for the person with autism -- but this April, this Autism Awareness month -- it has taught me so much about my son that I hadn't realized before.  It has reignited a desire in me to push harder in helping to heal him so that he can do more! And for that I'm thankful.

For me personally, this month has taught me to live as fearlessly as he does. 

So fearlessly, that I bought a pair of goggles and a swim cap.  I figured if I was going to do this, I best do it all the way.

So I put the goggles on, the cap on, and I put my face in the water.  I swam all the strokes with my goggles on, eyes open, and head under water.

And it was the most marvelous feeling in the world.  AmazingWonderful

So very often happiness has been a choice.  A fierce determination in defiance of the unhappiness autism sometimes is.

But until that day when I overcame a fear and swam like you are supposed to, I don't think I've truly felt that happiness.

I don't think my smile has gone away yet.

It was a whole other world totally under the water, seeing the black line at the bottom of the pool I was perfectly positioned atop.  Seeing the wall I was about to come to in completion of yet another lap swimming real swim strokes.

All those years of fearing the magnificence of what I'd just experienced!

All those years of watching Matthew swim - then finally doing it myself.

I wonder if that is what learning a new skill is like for Brandon.  All those days, weeks, and months of repetitive learning -- then finally the mastery of it.

In my self-taught swim class I do as often as Brandon's seizures allow me to be at the pool -- I'll probably never learn to do the strokes quite right, quite like I picture myself doing what I remember Matt doing -- but I can still consider myself a success in trying.

You can only be a failure if you never try.

I think that's why so many alternative doctors are seen as heroes to us.  They may not cure our kids, but at least they're trying.

The only failures out there are those who never try, who never step outside the box of what they were taught.

I feel amazing. 

There were so many fears I had to conquer, not to mention the fear of humiliation of the lifeguards watching me flop around like a two left-finned fish.   There were laps where I literally choked my way through them in trying to figure out how to come up to breathe, while swimming, without breaking stroke.   Oh my goodness how much more respect I have for my son's swimming accomplishments!

I feel like I found common ground with Brandon.  Like I shared earlier, I could see how free he felt when jumping on the trampoline.  But until I experienced my underwater-eyes-open swimming miracle, I never felt what he must be feeling as he jumped.

That freedom.

But now I know.

Being underwater there was no "Life with Autism."  There was no back pain, no discrimination, no judgements of if I'm too radical, not proper.  There were no advocacy fights to fight.  There was no fear of the future. 

There was nothing but joy and happiness and amazement of accomplishment.

There was no "I can't."

In the "Dream! Dare! Do!  NDCQ!" motto that I so love -- there was only "I did!"

I did something I thought I would never do.  Could never do.  And I'm still buzzing from that. 

It's giving me HOPEISM to keep dreaming, daring, and doing for my son so that perhaps one day after watching everyone else do things he can't do -- that perhaps one day I can get him well enough to be able to do them.  Clear that fog in his brain so he can.  Take the shackles off his feet so he can dance.

So yes, you must endure this picture of me in my Camo-swim cap and goggles --- it's my symbol of a long overdue hard earned victory.

A victory that perhaps only my Brandon as he's jumping on the trampoline, could ever understand.

To the HOPEISM that one day soon Brandon, you too will have your own "victory-buzz" in being able to do something you have wanted to do for so very long, but couldn't ----


(And yes Matt, I do know that the hair goes under the cap -- but that's just not as cute as this way is...)

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