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 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...



May 13, 2018

I am.....




I am…

I am the little engine that did.  When on my journey in life, my tracks led me to a mountain -  a diagnosis of (child’s disability) -  I looked at it with defeat - thinking there was no way I could climb over it.  I then pondered the obstacle before me, and I then said to myself over and over, "I think I can, I think I can...," then I slowly started climbing the mountain saying to myself over and over, "I know I can, I know I can,...."  and then I made it over that ominous diagnosis and continued my journey.
        
I am unstoppable. 

I am more devoted than Noah’s wife.  I sometimes feel overwhelmed in my  “houseboat” -- 365 days and 365 nights a year, constantly working with and teaching my child.   But when the storms of isolation and monotony become  most unbearable, I do not jump ship. Instead I wait for the rainbow that is promised to come. 
                  I am HOPEISM.

I am Xena.  Real life warrior goddess of (child’s disability).   With my steel plated armor I can battle anyone who gets in the way of progress for my child.    I can overcome the stares and ignorance of those without a disability in their lives - and educate them as to why my child is the way he is, and why he does the things he does.  With my sword of persistence, I can battle the schools to have them properly educate my child, and with my shield of determination I can block laws and legislation that would discriminate against my child.   Yes, I am Xena - and I am prepared for any  battle that might come my way...
      I am the invincible.

I am beautiful.  I have hairy legs because I get no time alone for me, I sport bags under my eyes from staying up all night with my child, and most days I feel I am simply running on fumes. The only exercise I get is the sprint from my house to my car - to take my child to therapy.  Dressed up to me is, well - just that I had a moment to get dressed!     They say that beauty is in the eye of the beholder - and so even on the days when I don't feel very beautiful - I will know that I am…….. because God is my beholder.
      I am fearfully and wonderfully made.

I am the Bionic Woman.  With my bionic vision - I can see through the disability my child has,  and see the beauty in his soul,  the intelligence in his eyes --- when others can't.    I have bionic hearing -  I can look at my child when he smiles at me,  and hear his voice say, “I Love You Mommy,” --- even though he can’t talk.   Yes, I am thankful to be Bionic.
      I am empowered.

I am Mary.  A not so well known mother of my son whose life would touch the souls of those around him, in a way that will forever change them.  And it started with me.  By teaching me things I would never have known, by bringing me friendships I never would have had, and by opening my eyes as to what really matters in life.  Things like  the Joy of just living in the moment, the Peace of knowing that God is in control,  never losing Hope,  and knowing an unconditional Love that that words cannot express.  Yes, I too have been chosen for a task I would never on my own have chosen, just like Mary.
     I am humbled.

I am Superwoman.  I am able to leap over tall loads of laundry in a single bound, and run faster than a speeding bullet, to rescue my child from danger.  I have eyes eyes in the back of my head and can hear a seizure gasp from my son in the other room even when I'm sound asleep in the middle of the night. Oh yes,  without a doubt, I am Superwoman.
       I am thankful.

I am Moses.  I  am imperfect.  I may at times question whether I am the right "man" for the job ---but God will give me the Faith I need to lead my child to be the healthiest and most independent he can be.     And like Moses, God will give me the  small Miracles here and there,  needed to accomplish my mission.
            I am a leader.

I am Stretch Armstrong – a mom that can be stretched beyond belief – and still somehow return to  normal.    I can stretch limited funds to cover every treatment and therapy that insurance won't.  I can stretch my patience as I bounce from doctor to doctor in a quest to treat my child.  I can stretch what time I have, and share it with my husband, my children, my church, and still have some leftover to help my friends.   Yes, my name is Stretch.  And I have the stretch-marks to prove it!
                               I am resilient.
        
 I am Rosa Parks.  I refuse to move or waver in what I believe is right for my child --simply because my view is  the minority, not the majority.   I refuse to believe "What can one mother do?"  But instead, I will write, call, and rally to the government if I have to, and  do  whatever it takes to prevent discrimination against my child and ensure that he gets the services he needs.
        I am brave.

I am Hercules.  The Greek god known for strength and courage.   The heavy loads I must carry would make others crumble to the ground.  The weight of Sorrow, Fear at uncertainty of the future, Injustice at having no answers, and the Tears of despair,  would alone possibly be too much, --- even for Hercules.  But then the Joy, Laughter, Smiles, and Pride,  - at my child's accomplishments, - balance the load to make it easy to bear. 
               I am indomitable.

I am touched by an Angel.  An Angel who  lives in a world of his own.   And it’s true.  He lives in a world of innocence and purity.  A world without hatred or deceit.  A world where everyone is beautiful and where no-one is ugly.  A world where there is always enough time when you simply live in this moment.  A world where he goes to bed with no worries of tomorrow and wakes up with no regrets of the past.  Yes, I most certainly am touched by an Angel, and in some ways,  his world is better….
            I am blessed.

I am a true "Survivor" - the mom of a child, who has faced, is facing, and will face, --some of the most difficult challenges life has to offer for longer than any human was designed to have to face them.   I am ready for the marathon to outwit, outlast, and outplay my opponent of disability.  The only things I will be given are the supernatural mental endurance and fortitude to last until the end; -- along with  a sense of humor to cope with all the twists, turns, and surprises along the way.   Oh yes, I am a  TRUE "Survivor" - and I only wish it were as easy as being on a television show and collecting one million dollars at the end. 
             I am the champion.

I am forged from the adversities I have been forced to face.  I have gained a strength from those fires that few could fathom. Where the most elite in the Military have a motto that says "The Only Easy Day Was Yesterday" - as the mom of my son who is vaccine injured I have found my motto to be, "There Are No Easy Days" - only battles to fight with little to no reinforcements for the weary.  And like those elite warriors, I will only be defeated in two ways:  If I give up, or if I die.  I am in it to win it.  I will run to the ROAR.  I will Never Quit.
          I am NDCQ.
    (not dead can't quit)

I am the mom of a child with a disability, all the above,  and so much more.   Some days I will want to be none of the above – and just be a typical mom with a typical child, doing typical things.  On those days I will know it’s o.k. to be angry, and to cry, and to lean on my family, friends, and church, for support.  Because after all, ---the most important thing I am, …..  is human. 
         I am unbreakable.

****

And on this day, and any other day I need to, I will read this as a reminder,  of just who it is,   I am………



I am Michelle and I live in vaccine-injury land because of the Jabberwocky called Pharma that feeds off of greed, fear, and dishonesty...

But you know what?

I believe in many more than six impossible things...

One of them being that Jabberwocky's can be slayed.

c. May 2000 By Michelle M. Guppy    inspired by Warrior  Mothers I have met on my journey - and dedicated to Warrior Mothers everywhere…….

Please contact MichelleMGuppy@yahoo.com for permission to forward or distribute or publish.


May 11, 2018

The Invisible Heroes...



I wrote the below "Letter to Society" several years ago...

I am sharing it here, for Mother's Day, in honor of all the invisible heroes who devote their lives to caring for their children who have lifelong disabilities, and especially for all who are not their mothers but who care for them as if they were.

I have been blessed to have had several invisible heroes in the course of Brandon's life thus far -- those who have gone above and to infinity and beyond for him. 

Who have loved him as their own.

But today, for this Mother's Day, I dedicate this to Brandon's current "Mom away from Mom" -- who cares for him at his day program.

There is nothing more priceless in all this world for warrior mothers than the peace of mind that comes from knowing that the person who you trust to care for your child - actually does care for your child.

And I especially want Trisha's children to read this "Letter to Society" and to know that of all the professions in this world, there is none.  I repeat, none --- that is more honorable, more valuable, than caring for the life of another person.  I see them at the center with their Mom and I wonder if they truly know what a remarkable person she is.  I see them watching her have to care for the most basic of needs in my son - and I wonder what they are thinking...if they truly understand the word "humble servant" and what it means to be the "hands and feet" of Jesus.  I wonder if they can even fathom how in Jesus' eyes, their mother is greater than the greatest and most accomplished and wealthiest person in this world. 

Society, school, everyone, everywhere tells you otherwise.

Don't believe it.

I wonder if they can understand that...  I pray that one day they do fully understand that...  It is my HOPEISM that they are so very proud of their mother in choosing to do what most others would shun or think is beneath them...

Because in heaven - it will be those who care for "the least of these" who will get the biggest "well done faithful servant" welcome.

Thank you Trisha --

Thank you to all the Trisha's of the world.

Thankful & Grateful,

Team Guppy



Letter to society

                                                              
I thought it was thunder rumbling in those late hours of the night… 

The calm, peaceful thunder that keeps you slightly awake, but yet relaxed enough to still rest, and sleep. 

But when the wee hours of the morning came, that thunder became not so peaceful.  Clanging and banging, but not in the rhythmic smooth way that thunder is.   That’s when I knew it wasn’t thunder.  It must be my son.  He’s up again.   I tried to ignore the sounds, thinking they would stop.  I was so tired….   Weeks in the summer when school is out can seem like  months when you cannot find attendant care.   But,  the mommy alarm in me wouldn’t let me ignore it for too long…  What if he’s wet… dirty….  hurt.  Then, as I lay there longer still, I became angry.  Why me.  Why again.   Why not wait and see if my husband gets up to check….

That made me angrier.  Knowing that really, even though my husband does his share,  I should get up and do all that needs to be done, because my husband has an important job to go to early in the morning.  He has responsibilities, meetings.  A paycheck to earn.  He must be fresh to do a good job, so he can keep his job.  Me, I don’t have a job, at least not one I get paid to do or can get fired from.  I stay home and care for my son and my family.  I don’t have to clock in.  I don't even have to get  dressed. 

And apparently, I don’t have to sleep either.

So it was with that anger, (and perhaps a bit of self-pity), that I trudged upstairs to my son’s bedroom to see why he was awake.  I didn’t need to turn on lights, I could follow the banging and clanging of toys being thrown, a bed being jumped on.  And by the aroma that met me when I opened the door, I didn’t need lights to tell me the reason why my son was up clanging and banging.

So in the dark I changed my son so I wouldn't disturb the rest of the family.  I perhaps grumbled too loud as I tried to maneuver a diaper on and off in the dark.  I perhaps grabbed a stray arm that was in the way of me cleaning him, a bit firmer than necessary.   And when diapers were changed, clothes changed, and sheets were changed, and he went back to banging and clanging, I know that perhaps I said to him way too angrily, “Go to bed!”

I’m not sure when he finally did go back to bed, but the next morning at 9:30am when I was to pick up my other son from swim practice, he was still sound asleep.  He looked so peaceful, so sweet.  Nothing like what I heard just a few hours earlier.  The guilt was quite a mouthful as I recalled what I was thinking about him in having to be up most of the night because of him.  I hated to wake him up, but knew I couldn’t leave him to sleep while I went.  So I woke him.  Once downstairs he was confused as to why he was turning to go outside to the car, instead of in my bedroom to the tub, his normal routine when he wakes up.

As I drove to the pool, I was now mad at myself, and not him.  Mad that I was mad about having to get up at night.  Mad about being tired all morning; and even madder that I had no one I could call to stay with him when I have to leave – or just to give me a break now and then.  I was mad that my back still hurt after two weeks of pain.   I guess a decade of bending and changing and chasing and dressing had started to take its toll.  Along with nearing forty, adding ten extra pounds; not to mention the lack of exercise because of taking no time for myself, even when I have it to take.  

Too many other more important things to do…

Then I happened to look in the mirror …

Not the rear view mirror, but the special mirror I have attached to my rear view mirror.  The one that allows me to watch my son like a hawk while I'm driving.  So I can see and hopefully dodge a drink he has launched my way.  So I can see when he’s escaped from his seat belt and can pull over before he gets to the front seat and grabs the wheel.

What I saw in that mirror humbled me. 

I saw a little boy with blonde hair, sleepy eyes, and disheveled hair.   I saw my child in pajama bottoms that were inside out and backwards because I had hastily dressed him in the dark in the middle of the night.  I saw a man, with a man’s body, in a sleeveless t-shirt.  A man I admired and who was worthy and deserving of my respect.  I saw a child who tries so hard to navigate a world he doesn't understand, and that doesn't understand him.

I saw my child who could not talk and who has autism, sitting there as pure and vulnerable and as sweet and as innocent as a human being could possibly be.

And I saw the real reason for my anger.

It wasn’t the little boy in the back of the van sweetly grinning and swaying his head to the beat as a song he likes came on.  It wasn’t the little boy who couldn’t sleep last night because he was wet.

It was society...

It was how society had slowly eroded my sense of self worth into thinking that it was a burden to care for or clean up after someone else.  That the job of doing that, wasn’t worthy of respect or an honest wage.  It was those subtle messages I am exposed to each and every day, that say that to be worthy, you have to be beautiful, perfect, smart, rich.   I am none of those things in the world’s eyes.  It was those messages I am exposed to everyday that say that I must be self-sufficient and have a career.  A title.  A degree.  The more initials after my name, the more important I become and the more pay I earn.   I have neither, and get paid nothing.  

So what does all that make me, or the job I do at home?

It was those messages that if you do have some sort of specialized training or position, that you have to do something the world deems worthy with it.   I did go through a policy-making class that trains you how to be a professional advocate.  I am a part of an important state agency council.  But am burdened that because I have no help in caring for my son, that the training and position is going to waste because I am not able to go out in the world and put that training to use.  All I can do is stay home and feed, change, and clean up after.  No traveling to important places to work on important policies to help pass important laws.  No, the most important thing I do each day is to remember to lock all the doors in my house so my child doesn’t run away or flood the bathrooms.

And it was that knowledge that had built up, that made me feel the angry way I did in the middle of the night as I changed yet another diaper, yet another set of pajamas, and yet another set of sheets; in caring for my son.  It was that knowledge that had built up that made me wonder if that is all I would ever get to do.  And if so, was it worth it?

I was sad at how society places value and worth on so many other things, except those things or people that matter most. 

I was sad at how the jobs where you care for others, are the most underpaid, understaffed, and ill-supervised. 

I was sad at how society teaches that no, it’s not worth it.

I was sad at the realization that I too, had slowly become a part of that society.

I was so consumed with finding someone to help me care for my son so I could go out in the real world and get a “real job,” a “real paycheck,” and do “really worthy things,” that I saw caring for my own son as a job that didn’t matter. And by seeing what I did as just a job that didn't matter – the person I was working for, my son, became an object. One that didn’t matter.  One that had no feelings.  By falling into that trap, I understood why there was abuse in state schools, nursing homes, and institutions.  Some there probably felt as I felt.  That their job didn’t matter.  They were working for clients or consumers, and not people.  So what if they talked to them rudely.  It was just a client, not a person. So what if they moved an arm out of the way bit rough.  It just belonged to a consumer, not a person.  So what if they made them lay there wet or soiled a little longer….  After all, it was the middle of the night, who would know?  

Who would care?

I do.

And my Legislator should.  

My state should.

The federal government should.

And above all, society must.

I am not angry anymore, I am humbled. 

At how God used my son, the least of these in the worlds eyes, to teach me a most valuable lesson that all the beautiful, smart, rich, degreed, important, initialed people in this world, could not ever have taught me.

He taught me that all I have to do to define worth, is to look in the special rear-view mirror of my car – and see what is worthy in God’s eyes.  To see what’s beautiful, rich,  and intelligent in God’s eyes.   My son’s worth is that he is simply a child of God. Not enabled, not disabled.  Just a child.  An individual.   My worth is further defined by knowing that in loving and respecting that individual that God thought important enough to create, I am doing what is most important in God’s eyes as well…

Caring for him…

~

And that is something I will never let society take away from me again.

Ever.

And if you are someone who cares for an individual in the way I must, do not ever let anyone take that away from you either.

~

Yes my son, if caring for you is all I ever get to do,  it is worth it; and I'm honored to do it.

Please forgive me for the times I ever felt otherwise.

And to all those caring for those like my son, you are the invisible heroes.

Don't ever let anyone make you feel otherwise.


Written by Michelle M. Guppy                                                         

For all the Brandon's of the world and those who care for them .......


April 6, 2018

Is my Suffering Showing?


Thank you to Timothy Welsh for making this image for me...
It is bittersweet seeing all the #saidnomother images.

Let alone the 7,000 names written in blood, sweat, and tears on the VAXXED bus that symbolize lives lost or forever altered by adverse vaccine reactions.

The sadness of all such awareness campaigns is too profound to put in words.

And then to add insult to injury upon injury, we have April.  National Autism Awareness Month.  Which for those of us who have seen the truth happen before our very eyes, should rather be named, "National Vaccine Injury Denial Month" where the book "Denial" by Dan Olmsted and Mark Blaxill is required reading.
I guess with the epidemic numbers of those affected by 'autism' growing exponentially every reporting year - those who even came up with such a month for society to be made aware of such a disorder - had to quickly back-peddle where instead of seeking to understand why - we now have an entire month to "light up" and "celebrate" the "new normal" that is here to stay.

Which is why most like me go into hiding this month.

It's hard to decide which is more unbearable -- living this "Life with Autism, Seizures, and a side of PANDAS" caused by vaccine injury -- or enduring a month that "lights up" and "celebrates" the chronic, painful, life-altering-for-all-involved disorder as if it were no big thing.

Each April in between blocking and hiding those who make a mockery of what children, and now young adults like my son must daily endure, - I try to pick one thing to share about that is real about what this month should be representing. 

That is something no family celebrates.

And that is the suffering.

I have blogs where I have shared about my son's journey - the good, the bad, and the very very ugly.

You can be educated about true autism and and how I survive it with true HOPEISM through any of my blogs:

Life with Autism in Pictures

From hell to HOPEISM

Where HOPEISM Blooms

God's Word Day by Day


But it was something a family member said to me that I want to share about for this month's awareness message...

And I don't share this to berate that person - but because so many others I come in contact with daily have had the exact same sentiment said to them either directly or indirectly.

It was something to the effect of, "So you want others to see how you suffer...".  I can't remember the exact words because as soon as I read them my warrior mom mode went from Proverbs 31 to Madea in .5 seconds.

As I do when faced with any adversity or accusation -- I did stop to ponder their words...

Perhaps that is the greatest dilemma in what this month is supposed to represent.

Do we take a disorder termed "autism" and truly show the horrors of it that would be beyond anyone's worse nightmare?  Or do we instead highlight the few and far between victories that give us brief glimmers of light from such horrific, epidemic tragedy?

Sadly, society has chosen the donuts with sprinkles.  Because everyone loves donuts, and sprinkles are all sparkly and pretty.

No one wants to hear the inconvenient truth of what this month should actually be representing -- which is wandering deaths, vaccine injury deaths, destruction of health, destruction of divorce, the severed artery that bleeds out financial destruction long after retirement, the no choices, no options, no treatments no respite.  The abandonment of family, friends, relatives.  The silence of the church, the apathy of society.  The absolute nothing of actual value being done to stop the exponential rate of more "autism" in terms of facing the reality of what is causing that exponential growth rate of autism.

My husband and I should be planning our retirement travels.  Yet sadly there will be no retirement nor any golden years to travel and enjoy our empty nest.

What there will be is constant care giving of our adult son with "autism".

There isn't even dying in peace to look forward to, no one I know can ever die because there is no one to take over the care of their loved one with autism.

But to say that, to type it, well, I've had Adult Protective Services called on me twice now for sharing the raw truth of what this life is like. 

People simply cannot handle the truth, let alone your truth.

If you share it, you must be endangering or exploiting the child-now-adult that you've sacrificed your whole life for in caring for to the best of your ability.  People allowed to anonymously judge you for actions they've never seen.  Just from what they've read.

Gawd-forbid people actually be allowed to know the truth that while we love our children/adults fiercely and do our absolute best in caring for and protecting them, helping them; what has happened to them should never have been allowed to happen and because it did - they, and us as parents/caregivers, suffer greatly because of it.

This month should be one that not only acknowledges the epidemic that is autism, but the suffering of the multitude that goes hand in hand with that.

Yes, there are inspirations and achievements and victories, and things within that suffering that we can, and do, celebrate in our children.

But make no mistake, it is the suffering that this month must be about for anything to change.

If not, then why do we have a Vietnam Memorial Wall?

Are all those names on that wall celebrations of those who survived the war?

No.

It is a wall to reflect on the 58,220 who did not survive the war.
Dare I say, the 58,220 who.suffered.greatly.
We can erect a National Monument to reflect that, but dare we as parents even but whisper about the sufferings of the 1 in 36 who have true autism via vaccine injury.

As of this writing, there are 7,000 names of those individuals or children/teens/adults who have a vaccine injury or who died from vaccines on the VAXXED bus, which is our memorial wall.

Those individuals who could sign their own name, didn't do that to celebrate what happened to them.  The parents who signed their names for those who couldn't, certainly did not do that to highlight to the world how great their life is in living with vaccine injury!

The moms whose children are but ashes in an urn or coffin didn't sign their dead infant's name in celebration that they took one for the herd!

No.

Each of those 7,000 names that represent but a fraction of the carnage caused by vaccine injury/autism - is a symbol of their suffering.
As inconvenient and politically incorrect and as ungraceful as that truth is, it is still the truth.

It seems that it is ok for any other issue to highlight suffering so that society is moved to action to help stop that suffering....

As long as it's not autism.

No, we as a society choose to celebrate that devastating diagnosis of autism and anyone who dares portray the truth, well, they just need some prozac to help deal with their extreme negativity.

Cue the Miranda Lambert lyrics, "It don't matter how you feel, it only matters how you look..."
And it seems we do like our autism awareness to be beautiful.

At all costs, we must hide our broken hearts lest someone actually see it bleed.

I have known what it's like to suffer in silence, and that is why I love to be a sponge for other warrior moms on this journey.  I am not a talker, I am a listener.  If I must be confined to my four walls along with my son who cannot tolerate the outside world - at least I feel I can do something -  listen to and help encourage others in this journey from hell to HOPEISM.

And the stories I hear, the heartache shared, the devastation, destruction, isolation, abandonment -- is literally heartbreaking.

Parents who are shunned by their own families.  Ignored as if they don't exist.  The horrific reality of not knowing what to do, who to turn to for help.  The absolute despair in having a child who needs infinite funding from finite funds.

For the vast majority, it is fellow warriors on this journey who are the support system, not their family.

Certainly not society.

In most cases, not even the church in their own back yard.

I've often wondered why that is.  Perhaps we have been wrong in shielding those around us from our reality.  We've had to be so strong and so positive to survive that if for once we become vulnerable and share how it really is, we are deemed weak or negative.

Or in need of therapy.

If I had one wish for this month, it would be for everyone to go to Joshua Coleman's Facebook page to view the #saidnomother album.

#SaidNoMother Campaign

It would be for everyone to go to the VAXXED bus on The Autism Trust property and trace their finger over the name of someone with autism...


But I warn you, in answer to the title of this blog, "Is my Suffering Showing?"

Yes.

Yes, the suffering of an entire generation of children whose health was stolen by adverse vaccine reactions and the parents who must forever care for them -- is most definitely showing.

And rightly so.

The suffering that goes on behind those photos is unimaginable and unbearable and to make a mockery of that by celebrating or lighting up anything blue this month is reprehensible.

But yes, the other thing that shows behind the #saidnomother photos, behind the 7,000 names on the VAXXED bus, -- is survival.

We do survive only because we must, we have no choice.

And maybe, just maybe one day when the media is brave enough to allow society to see the true enormity of the epidemic of autism - the true suffering of the real individuals with autism and their families living their very real life with autism - something worthwhile might have a chance to actually shine for each of us this month...

#HOPEISM


The HOPEISM that the acknowledgement of their suffering would bring.

That direct tangible help to them and their families would bring.

That appropriate day programs would bring.

That safe, appropriate, and affordable housing alternatives would bring.

That regular respite or short term reprieves for caregivers to actually take a weekend off or a vacation would bring.

That treatments and supplements actually covered by insurance would bring.

That financial help for items and services our children and adults need would bring.

That the public governmental acknowledgement of what caused this epidemic would finally bring.

That......

Oh I'm sorry, is my suffering showing again?


Yes, it is.

But for those who are brave enough to walk alongside us and see what our life is truly like and help us instead of judging us when we share about the suffering, you might just learn how our #NDCQ shows just a little bit more.

February 26, 2018

A weekend to glow...


I've been thinking about the "A Night to Shine" event a lot lately.

The Tim Tebow  Foundation provides for an unforgettable prom night experience for thousands of individuals who have disabilities - and their volunteer escorts for the night who are the gracious and loving hands and feet of Jesus in making them feel like true Kings or Queens for a night.

I have seen many who I know participate in this and I've seen the pictures of pure joy on their faces in how much it meant to them, but at the same time, I found myself once again letting out the deep sigh of longing for something similar for those of us who have children of any age who cannot participate in the fun party-like atmosphere events. 

Not because they don't want to do things others do - it's just that for a large population like my son,  their "shine" needs to be more of a "glow" suited to their unique sensitivities... 

Our "Life with Autism, Seizures, and a side of PANDAS" is something that significantly affects our son.  He is non-verbal, an escape artist, and cannot handle large crowds, loud music, and overwhelming simultaneous sensory stimulation.  Events like "A Night to Shine" would be more "A Nightmare on Elm Street" for him.  He would be overstimulated, stressed, and a ticking time bomb of total meltdown waiting to happen. 

For my son to shine, the atmosphere needs to be more of a glow...

Yet all these years later, all these "Autism Awareness Months" later, - society still doesn't understand that.

How for those who can participate and enjoy and look forward to "A Night to Shine" - there are dozens of opportunities for them out there - programs they can participate in.

But for those like my son whose needs are so different, there is nothing.  Few to no programs, -  so they, and their parents, are left in their eternal isolation.

Those like my son need "A Weekend to Glow" while their parents/caregivers get a much needed "Weekend to Remember" where both win.  Where my son gets an opportunity to be away from us.  A low key opportunity for him to glow in the peace and serenity of things he likes.  Simply having a buddy who has fresh wind and fresh fire to chase him, tickle him, take walks with him, or simply sit on the couch and rub his hair as he so likes.  The opportunity to be on the stage feeling the vibration of the music that is playing. The opportunity to be around others in his own low key way. 

Where their parents get to have time to enjoy what others take for granted - a weekend of spontaneous.

I am blessed, thankful, grateful, and any such word that describes the absolute gift it was that someone "got it" with regard to the population of those who have disabilities as my son has.  Those significantly affected by autism who cannot handle events like "A Night to Shine" but who still need the ability to "glow" for once.  To get out of the confines of the four walls of their fortress from the world at home.  To be the center of someone's attention in their own way - whether that means simply someone to play video games with them, listen to music with them, line up trains and cars with them, or simply take care of them and keep them safe.

Camp Blessing, TX "got it" this past weekend with their pilot respite weekend.  And for once, I was able to let out a sigh of thankfulness and not one of longing.

No longer was I jealous of what the "A Night to Shine" had meant for others, because for once something was just right for us in a weekend for our son to simply glow and for us to relish in and remember.  So many have asked what we did, where we went, and there too - is a lack of awareness.  We didn't want or need to do anything special -- it is special just to have a weekend sans autism.  Just to be able to complete a task without a hundred interruptions.  To be able to get up and go somewhere and do something without the constant hum of autism tagging along.  We don't need a vacation from our life, we need a vacation from autism in our life - and this past weekend we had that it was absolutely priceless.

And from the look on Brandon's face on the way home from Camp Blessing, TX, I think it was pretty priceless for him too.

Thank you, to all of you at Camp Blessing, TX who made that happen.

We will never forget how that one weekend to glow opportunity has allowed all of us to shine.

January 27, 2018

These ARE your children, this IS your circus...


I used to think that it was politicians who need to spend a day in my "Life with Autism, Seizures, and a side of PANDAS"...  But the older I get, or perhaps hopefully the wiser I get, I think it's actually young parents, or parents-to-be, who need to spend that day or week walking in my shoes.

In my old, tired, and nearly worn-out shoes...
In January, I quietly turned 50...

Brandon, who is the above-mentioned "Life with Autism, Seizures, and a side of PANDAS" crazy, mad, wonderful son of mine, --- is 24 years old.

I have spent about half my life so far, living a life few could imagine with a stress that is entirely unfathomable.

I have shared openly, transparently, and quite honestly about that life in my various blogs, each of which have a specific message from my journey:

From hell to HOPEISM

Journey through the Bible

Where HOPEISM Blooms

Life with Autism in Pictures

And the overriding message is this...  while I have highlighted the very, very good, it is the very, very bad that is what leaves the bitter aftertaste at the end of the day.

I don't intend this to be a woe is me type post.  I am stronger than that, and hopefully if you've read any of those blogs shared above, you would see that. It is more a woe will be to you if you don't heed this warning and pledge to be #AllIn.

And I don't necessarily mean this as a condemnation post to anyone reading this. 

What I intend this to be, is more a call to conviction.

You must be convicted of something before you can fully understand why you must take action on it.

I'll put a spin on the saying, "Not my monkeys, not my circus" because I do not want to appear as if I'm equating children to monkeys - because I most definitely am not.  But I do like that saying for how it applies to the point I wish to make.

If I could go back in time to April 2000 when a group of then rookie moms organized the first ever autism awareness rally and Congressional Hearings...  We knew what caused our children's autism.  We knew we needed to stop it.  And we tried our very best to do just that.  We begged fellow moms to join us, to hear us, to shout the truth with us.

They didn't.

Because if they had listened then, there would have been no need for a Texans for Vaccine Choice now.

Let that soberly sink in.

In fact, I'll say it again...

If parents, friends, relatives, co-workers, fellow voters, had been #AllIn then, there would be no need for me to beg each of you to be #AllIn now.

If nearly two decades ago everyone in our sphere of influence, in our "listserve" groups back then, would have been #AllIn -- we would have all been out of this mess by now.

Yet here we are.

Those veterans like me who are now 50 or older - still fighting the same fight.  Still finding time, making time, stealing time for the cause even though we can never get back the time our children lost.  Still hoping for the healing of our children's health that was stolen and may well forever be stolen.

As was the case then, many of us now veterans in this war look around and see the rookies among us wishing for change, yet not sacrificing a thing for that change.  Content to know that someone else is out there doing or saying what they won't.  Someone else out there sacrificing what they refuse to.  Rookies today truly have no clue what their life will be like when they too, quietly turn 50 and are still in this circus of vaccine injury.  When they wake up worn and weary yet still have to gear up to take care of their adult child with vaccine injury.

If the reality of vaccine injury has not sunk in, allow me to be your sledgehammer...

As hard as Brandon's toddler, child, and teen years were, -- I assure you his adult years have by far overshadowed all those years combined.

And the adult years will be longer.

It is you who need to see what it's like to have to lift, clean up after, and care for someone who weighs as much as you, or more.

It is you who need to see what it's like to still have the same expenses not covered by insurance that do not care if you are living on a retirement income.

It is you who need to experience what it's like to wake up and not have anywhere safe or appropriate for your adult to go.


I am tired.

I am way too busy.

I am financially broke.

But neither of those things are an excuse to not do what I can, give what I can.

As hard as it is, as vaccine-injured as your kids may be, -- if we don't succeed in stopping every vaccine mandate that comes through each session -- it will only get harder.  You will be more exhausted.  More financially ruined.  And will have fewer options for help because there will be more and more the state must help.

And all who aren't in this vaccine-injury/autism circus -- these are very much your children because your taxes will be so high in caring for them for their life, that you will be as financially ruined as we are.  Perhaps more so because there will be fewer and fewer actually able to work to contribute to taxes.  We will all die, and you will be left with footing the bill for not only this entire generation of children who will have a normal life span but who will never be able to live or work independently, but the next one as well if we don't stop the vaccine mandate train now.

Those like me are fighting this war not for our children -- ours are already vaccine injured.  We are fighting this war for your children one day so that you have the choices we didn't.  The information we didn't.  So that you can have the healthy children we didn't because of vaccination.

It is you who feel these aren't your children and this isn't your circus - who need to come spend a day in my home.  It is you who need to see the terrible toll it takes.  It is you who need to see the urgency to help fund Texans for Vaccine Choice and other like-minded organizations.

Because it is YOU who are voting for the candidates who will win the office who will then help mandate the further maiming of yet another generation of children by mandatory vaccinations.

YOU
need to see the true picture of what vaccines do for health.

And to the current multitude of parents who do have vaccine-injured children, it is you who need to find something you can do or some amount to give - to TFVC.  We veterans didn't have a dime to our name all those years ago when we were spending every waking moment planning and organizing and attending the rallies and hearings.  While at the same time spending every penny we had in trying to heal our children from what we knew injured them -- vaccines.  But we knew the urgency and importance and we did without.  Without sleep, without a marriage, without money.  We worked so hard to stop the madness then, so you wouldn't be where you are today with a vaccine-injured child.

Yet here we still are.

And here I am still pleading with you to think of all those in your circle, all those younger than you, - and all they will have to go through if you do not do all you can now.

Stop for a few moments and think about that.

Is the life you are living a life you want to pass down to anyone in your family who might have children one day?

Think of the milestones your child has missed -- do you want your children to miss out on those in their children should they be vaccinated to near death with no choice?

What is the ability for them to have that choice worth to you?

Don't be of the ignorant mindset that they won't be your children, it won't be your circus.

Because they will be. 

It will be.

If you are fortunate enough to have a typical child - it is their children you must fight for so that they won't be left with vaccine mandates with no exceptions. 

And no state left to hide in.

I was fortunate to have one non-vaccine injured son.  He lives in California, they will most likely have a child while living there.  They want to come to Texas one day when he is out of the Navy...

Don't allow our lawmakers to California our Texas!

Don't let all our work all those years ago be for nothing.

Do not think someone else is going to protect your child, your grandchild.  It is your responsibility to do the thing you can do.

And everyone can do something.

These ARE your children, this is your circus.

And there is no choice but to be #AllIn

As for me, I absolutely detest having to give yet another dime yet again.  I am at the age I should be enjoying empty nest and a life of traveling with my husband.  Or at the very least be able to spend my money on whatever the hell I want to...

But yet again I will pledge to give that which I do not have to give, and trust that God will provide.

When fighting a war you don't get to stop when you're tired, old, burned-out, too busy, or too broke.

You get to stop when the enemy is tired.

When the war is won.

And it seems our enemies are getting their second wind.

And this war is far from being won.

So what will you give to help win it?

~ ~ ~ 

Be All In -- 

Click these links and take action however you can...

Texans for Vaccine Choice

Texans for Vaccine Choice Facebook Page

Texans for Vaccine Choice Twitter page