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.

June 23, 2018

Once Upon a Marriage...

Once Upon a Marriage there lived a strong, handsome  Spartan-in-shining-armor King whose smile lit up the Kingdom; along with his beautiful, supermodel-tough-mudder-warrior of a Queen.  Their Royal Castle was filled with money, things, and the laughter and antics of their two Royal Prince's: Matthew and Brandon, and the muddy paw-prints of a Royally Neurotic Labrador Retriever named Chevy....

Ok, fine.

Back to reality...

I've been at my desk off and on for a week trying to find the words to reflect on thirty years of marriage. 


And not just your typical kind of marriage, but an autism kind of marriage...

Big difference.


I even went digging through stacks of pictures in hopes of finding some inspiration to commemorate such an occasion.  I mean, for a marriage (add in life with autism, seizures, and a side of PANDAS) to last this long in the midst of today's drive-thru-disposable society is worthy of some sort of fairy tale story, right?

A medal?

A million dollars?



I guess a dose of "Life with Autism, Seizures, and a side of PANDAS" marital truth will have to suffice.

It was hard looking at all those pictures.  

It brought back the floodgates of should have been, could have been, would have been if not for...  I mean, as parents of young children you expect it to be hard.  You expect your marriage to time together to take a back seat to raising kids.  You expect the sleepless nights and sacrifices.  But then you know that ends and then you can pick up where you left off, so to speak.

Our child is twenty-four years old.

We have yet to be able to have that transition.  We've been in the starting blocks with the adrenaline rush just waiting for the gun to sound so we can go full speed until we cross our finish line. It has yet to be fired. I have to laugh at how if it ever does go off I'll be so stiff from being in the starting blocks so long that I'll fall flat on my face and not be able to go anywhere!

More than anything, looking at those pictures made me laugh at how naive we were.  Looking at pictures of how we thought we were in love, and then knowing what love actually is, are two very different things.  I see the posts of typical young (or older) people living typical lives with the typical challenges - either with typical children or no children yet - and how they gleefully share how proud they are in how their marriage has "endured" those typical things, and I have to laugh.  Hard.  They have no clue.  None at all!

(Heck, looking back at our pictures of our early years in  "Life with Autism" before all the seizures and PANDAS - I had no clue either!  I mean, we were bigger, stronger, and faster than a young Brandon!)

And I pray they never have to have an inkling of a clue of what kind of  "enduring" our marriage has had to have...


I guess to even begin to share about what kind of marriage we've had since autism, how we have learned about what loving someone and true commitment to that person really is; I would have to go back to Valentine's Day 2010.  It was on that day Todd and I stood in a court before a judge, and when he asked each of us if we would vow to protect our son and his rights for the rest of his adult life, - we said, "I do".  Knowing full well that saying "I do" to him, meant giving up yet another piece of us and the "I do" to our marriage.

But we did it...


Because only in thinking about and fully realizing what his vaccine injury/autism means to him, could we understood what our marriage commitment truly means to us.  And what unconditional love truly is.  You may marry for love, but you stay married because of unconditional love.

(And it's how I do boldly say that any marriage that does not have the magnitude, --the length, depth, width, breadth of the all encompassing consequences of vaccine injury as ours does, --you've not understood what true commitment is, nor has your marriage endured on this lifelong level.  Nothing compares to what this community of marriages have to face, and for the length of time they must face it. Nothing.)

Brandon cannot divorce his autism when it hurts, gets too hard, gets old.

Think about that.

I have.

Many times.

Sometimes the weight of  trying to be everything to everyone gets so heavy that I just want to run away.  But then I think of Brandon and his vaccine injury.  His seizures.  His PANDAS.  How he has no choice but to endure.  To fight.  To survive.

Our marriage deserves that same mindset.  

We see all the pain, frustration, and limitations his autism places on him.  We see in him all that he has lost.  We know what it's like to want to be free of what those things mean for us as his parents and caregivers; and can hardly imagine how that impact is a thousand-fold for him in being the one who must ultimately bear the weight of his injury and all that comes with it.

Yet he must.

He has yet to be able to think or say to all that affects him, "Ok, I'm done!"
"Autism, I'm packing up my things and am out of here!"

"We had a good run of it autism, but it's over!"

"I've found someone way better than autism!"

"We are never, ever, ever, getting back together again, like, ever..."
(cue Taylor Swift song)

He can't.

That is the depth of marriage commitment someone like us has to have with autism.

Brandon has no choice but to deal with what hinders him.

Therefore quitting cannot be an option for us for lesser things.

And trust me, anything other than life with autism, is a lesser thing.

Much like there is no magic potion to restore what was lost in an entire generation of vaccine injured children - there is no marriage counseling, marriage seminars, marriage books, or marriage retreats that can come close to advising a couple how to endure a vaccine injured marriage.

There's just not.

For one, there's not even a way for most parents to go to such things.  No one has even understood that basic first step yet!

Those of us whose marriages have endured, have had to learn how to do so essentially on their own.  We are thankful, grateful, and blessed that for us, our faith has been the rock where each of us has been sand a time or two (or three) over the years.

While many things have happened to cause us to question that faith a time or two (or three), it has never been washed away.

Our faith is a faith that has been forged not by conviction, but by fire.

And in this rock, paper, scissors game of married with autism, fire wins.

While God has been, is, and always will be the mountain; that I have been a pebble, and Todd a rock, is only because of the boulder Brandon is.  He has had to hold fast through the storms he faces; and in seeing the incredible amount of strength he has to survive all he must survive, we have found a great strength for our marriage to survive all it must.

For as long as it must.

We've endured the tenderness of a rare moment to actually get to look at each other and share a thought with one another; and we've endured the eternal heart-stopping terrorizing moments of a PANS flare.  We've cherished the bittersweet Kodak moments we've managed to capture in seeing Brandon without his autism, and we have tried our best to delete the horrific, sometimes bloody moments of what that autism has done to Brandon.     

With the exception of a few, we've been abandoned by family who should have been (and be) our closest allies; but in their place we've found a tribe of warriors, most of whom we have never personally met, who have stood beside us and fought alongside us and who have helped us up each time we have fallen down.

There have been fleeting marriage moments where we could get in thirty seconds or more of a conversation before being interrupted by humming or the demands of autism; and there have also been many more weeks or months where we felt more like nurse and doctor giving shift reports as one clocks in and the other clocks out in caring for our son.

In a marriage that thrives on putting each other first, because of how deep the claws of autism are, not only has "each other" been last, but the "marriage" hardly made its way on the list at times.  No marriage seminar advising regular date nights to keep the love kindled is titled, "Date Night, table for three please!"

In reality our marriage has been so tag team based that it's like the child of a divorced couple -- one week Todd does what he wants on the weekend, the next week I do, and then when Brandon is feeling good and we're feeling brave, we all attempt something together!

And there's not a thing we could (or can) do to change that.

Not on our own at least.

We needed (and need) a village to help, but sadly more often than not we've found ourselves on a remote island with way too many other husbands and wives in the exact same situation.

Autism is spelled C.O.N.S.T.A.N.T  D.E.M.A.N.D.S.  It is not something that can entertain or care for itself for any length of time.  It is not something that can go out to play, be put in front of the television, or sent off to a friends house or to Grandma's for the weekend.

Oh, how we've longed for those opportunities - to simply be in our own home by ourselves for just a weekend or two here and there.

Despite the challenges, we have done our very best to live well, laugh often, and love much in this crazy, mad, wonderful marriage journey.

We've had memorable's, forgettable's, regrettable's, and in Todd's words, "non-recoverable's".

There have been moments we've laughed so hard we couldn't catch our breath, and moments we were sucker-punched so severely it knocked the wind right out of us.

We are ever so thankful & grateful to those who have been our tribe; those who have been a blessing in helping to ease a burden, pray us through, provide respite, a vacation, a bucket of water for our journey through hell.

We have cherished the times on top of the mountain, and have loathed the times in the valleys.

And we have been humbled in having to admit that it has been in the those valleys where we have learned the most about life, love, marriage, fairy tales...

Because of autism, we've been apart more than we've been together.  But because of that, our precious times together have meant so very much more.  We have learned to take nothing for granted.

It has only been through our journey from the hell of autism to the HOPEISM our faith gives us, that we truly understood what a fairy tale marriage is.   For us, it will have nothing to do with happily ever after.  It just won't.  Vaccine injury rewrote such endings for an epidemic number of marriages (the ones that have survived) and unless God chooses to completely heal our son, or calls him home before our time, there will not be peace in our final marital sentence knowing we leave behind our most vulnerable, completely dependent son who we love with all that is within us.  Happily ever after will be for those who leave behind children and grandchildren who can live independently and take care of themselves...

I think perhaps though, we've learned something far better...

That a fairy tale is more about slaying dragons than happily ever after.

And I think I can say that as the King and Queen in our fairy tale marriage, we have slayed a hell of a lot of dragons to get to this point.

The most fierce dragon being divorce.

We've won some battles, lost some battles, and our marriage has been beaten and bruised beyond recognition at times by those battles; but we've never quit.

Each dragon bravely fought with all the strength we have.

There has been no fairy godmother, no carriage, no kingdom...

Only a sword:


Deuteronomy 33:29

"Blessed are you, Israel! Who is like you, a people saved by the Lord? He is your shield and helper and your glorious sword. Your enemies will cower before you, and you will tread on their heights.”

We can't know what the next years of marriage might hold...  And unless society changes how it supports those with autism, unless the government changes how it financially helps those with autism, and unless families, friends, and the church fully grasp the enormity of autism and step up to help in whatever tangible ways they can -- our marriage with autism will only get harder.  Life with autism will continue to steal the very air a marriage needs to breathe.

All we can cling to with all the strength that is in us, is the HOPEISM that God will continue to sustain us, provide for us, and be that shield of protection around us with His Love, Grace, Mercy, Faith,  --- and Humor.

Lots and lots and lots of humor...

Fairy Tales are more than true; not because they tell us that dragons exist, but because they tell us that dragons can be beaten. 
Neil Gaiman, Coraline


Our marriage in "Life with Autism, Seizures, and a side of PANDAS" will no doubt continue to be paved with many more dragons to come; but together we plan to slay each and every one of them!




A trip down our memory lane...

Oh how little we knew about love, life, marriage, anything!

It was thanks to our Navy-son, Matt, who through the path he chose to pursue, introduced us to the warrior mentality that would get us through the many battles that would be coming our way soon after this calm in the storm.

Baby shower!  Where was my tribe then to guide me in the wisdom of how to prepare for our first child!  Oh, how I wish I had my tribe back then to warn me NOT to allow all the things I allowed!

We have certainly had our share of high's on this journey.  We cherish these few precious times together of being able to go, do, and be...

Laughter.  It has been our saving grace.  The precious few and far between times we've had to be together, we've, .....needed adult supervision.

I think this picture captures the essence of our marriage in "Life with Autism, Seizures, and a side of PANDAS" in how you freeze-frame the good times, and delete from the camera the bad times.

Endurance.  That's what a marriage takes.  But oh, when you cross that finish line, the sense of accomplishment is worth all the tears shed to get there.

Marriage Moments... courtesy of Team Guppy 1.0 who were caring for Brandon so we could spend "Christmas in Cali".   And yes Todd, I still remember why you have that smirk on your face!  Not funny!  :-)

Marriage Moments, thanks to those who offer to be the hands and feet of Jesus for Brandon so that we can run a hundred miles an hour with our hair on fire, er, full of mud.

In a marriage like ours, "Date Night" has often been during "Day Surgery" for our son...

Marriage Moments thanks to Camp Blessing, TX

Marriage Moments made possible only because of those who offer to care for Brandon.

Oh how we cherish those moments of solitude, peace, tranquility when Brandon sleeps...

The key to marriage is to laugh until you can't breathe.  This was yet another "Date Night" during "Day Surgery".  And another reminder of why we need adult supervision when out in public.  Who knew taking a selfie could be so hilarious!

Unleashing our inner hippie while Brandon is at Camp Blessing, TX

Warriors.  Till death do us part!  HOOYAH!

We still do...

HOPEISM...and eternal Praise to our Lord and Savior Jesus Christ.  That is the rock that holds our marriage together.  This vacation of a lifetime was made possible by Happy Someday.  We were so very Thankful, Grateful, and extremely Blessed by them giving us this most precious gift.

Hand in hand, side by side, my ride or die...

Never Quit.....

Finish Strong.

June 17, 2018

Dad: The Man, The Myth, The Legend

It's hard to put into words the above pictures.  Taken at a time of such innocence, before the ravages of "Life with Autism, Seizures, and a side of PANDAS" truly took over.

The pictures represent what our hopes and dreams of children would be, our little tank of Guppy's and the crazy, mad, wonderful world of adventure that awaited us as we began our family. 

A lifetime of mischief...mayhem...milestones...

But as life does sometimes - it brings you lessons you never wanted to learn.

It is the wise person, the wise father in this case, who has the choice to find the purpose in them where none can be found, or be defeated by them.

I know my own thoughts as a mother; but as I have watched Todd all these years as a father - seen his prayers - watched his tears - was amazed at his strength - I wondered if even in all that I could fathom what it truly felt like to be a father of two such opposite boys...

One who fearlessly ran toward the world at high speed...

One who lives in such need of protection from that very world...

How thankful I have been for Todd's strong arms of protection as time and time again he attempted to shield his son from the world that confused him, tried to hurt him, was painful for him, or that he simply did not want to be a part of as much as we have tried to include him in.

Where Brandon preferred to be the moon with its black & white serenity and simplicity....

... Matthew was our sun. 

That bright, shining star that brought such vivid color and complexity to our home.

Todd was that father who ran a hundred miles an hour with his hair on fire teaching Matthew all there is to know about being a boy; yet who sat still for eternities on end simply praying Brandon through yet another trip to the emergency room.

Todd has been the warrior dressed in Camo in support of one son who wanted to join the Navy and conquer the seas...

While at the same time sterilized in scrubs as he waited time and time again to take his other son in the procedure room for a simple dental exam.

It's hard to put into words what it must feel like for a Dad to be able to go on a vacation of a lifetime with one son; knowing the other son is home, unable to go to the places he longs to take him.

A Father bears the weight of the world for their child - and some fathers like Todd must bear the greater weight of that very child on their shoulders.

One son can never even know that he has a father, and the other son who does know he has a father, will never be able to fathom the length, depth, breadth, and width of that love...

Todd spent many hundreds of dollars to sit on a wall for a week and watch as one son went through hell. Knowing he couldn't help him through it, he still wanted to be as close as he could to will him through it.

While one son only had to conquer one week of hell, Todd has taken countless trips through hell in sitting beside his son though yet another meltdown, yet another doctor visit, yet another sleepless night, yet another attempt to help him be able to simply navigate the world around him.

Countless more dollars spent than prayers answered... 

Yet in that he has learned what typical fathers never will:  the true humility and humbleness of living well, laughing often, and loving much.  Living simply and being thankful & grateful for God's provision that provides for his family.  Of being able to understand what being the hands and feet of Jesus means to another person.  

Despite the hardships Todd has been the kind of father who paves the path in finding peace through prayer and a faith forged in the fires we've had to face.

Through it all Todd has been the father the father is no doubt so very proud of.

Todd has seen the highest of highs and the lowest of lows with his sons.

The many good times with Matthew ---

The rare times with Brandon that are even more precious because they are so very few and far between... 
Those times where he gets a glimpse of his son and not his autism.

So many adventures where Todd has been able to teach Matthew survival skills in the outdoors to shape him into the man he is today and the father he one day in the future be.

Such bittersweet moments of anguish, care taking, and trying to teach basic life skills to his other son who was denied the ability to be on his own with his own family - and who will instead require a lifetime of care in our home.

I long to be able to put into words all that this day means to Todd.
How he has flown to such heights with one son while being grounded by the other.  Such extremes of fatherhood...
Yet as I've watched him all those years I've seen how it has shaped him and hardened him.  Not in the world's harshness, but as a believer who builds his faith, his convictions, his prayers, on a rock that cannot be moved.

He has been shaken, greatly.

But he has never fallen.

He will never quit.

And I think that is the greatest legacy he will leave the son who can understand it, and especially the son who never will.

Where as a father Todd has such pride in one son and his career of  honor, courage, and commitment ---

 He has even more pride in the other son who taught him what those words truly mean.

 ~ ~ ~ 

While it may have been this son who made Todd a Father...

It was this son who has shown Todd who God the Father is...

His Grace, Mercy, Unconditional Love, Faithfulness - 

...and sense of humor.

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ 

It's hard to quantify what "Life with Autism, Seizures, and a side of PANDAS" has stolen from a family...

One can only put it in the perspective that on today, Father's Day, it has stolen the very essence of a boy to even understand that he has a dad. And with that has stolen all the typical milestones and memories there are for a father/son to have...  

But in their place, bittersweet memories and moments that only a father of a son like Brandon can understand.  Those times when you truly know what it is to love a son unconditionally. 

Perhaps more than what was stolen from Todd as Brandon's father, the true theft has been what was stolen from Brandon...

The chance to one day be a Dad.

~ ~ ~

Two fins way up to you Todd - for the being the best bad-ass Bone Frog to our two Guppy's whose worlds are as opposite as can be...