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 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



January 26, 2018

I'm 50 and too old for this...

Insert image of Brandon standing on that top rail...
I have a new title for my imaginary book about "Life with Autism, Seizures, and a side of PANDAS" ---

Since I recently celebrated by 50th Birthday -- I'm going to title it:
"I'm 50 and too old for this shit" --- where I include chapter after chapter of all the near-death experiences "I" have faced in all of "Brandon's" near death experiences because of his seizures and his general lack of any fear of any danger....

Ahhhh, this picture...........

As I type this a few days out from "the incident" I can again feel that knot in my stomach.  That feeling of having the wind knocked out of you...  That horrified shock at what could happen.  That thought of I'm 50 and too old for this shit...

You see the top of the rail of the deck around the trampoline and how it's higher than the fence?

The corner sticking out furthest from the trampoline?

Where there is nothing to hold on to?

Brandon was standing on that.

Wearing socks...

Standing on that top rail of the deck.

Not sitting on that rail....

But standing straight and tall on that top rail.

Did I mention that he was wearing socks?

And that they weren't slipper socks?

I mean, if I could pause for a minute and just state that when we "walk the plank" at obstacle course races, on a 2x4 that is like only a foot off the ground, I fall.  The top of that rail in this picture is 7 feet 2 inches above ground level.  I measured it.  Brandon is 5 feet 10 inches tall.   You do the math at how high above ground level he was... 

When I went in the house to check on his food that was warming up, Brandon was merrily jumping on the trampoline.  It couldn't have been more than 2-3 minutes when I went back outside to check on him and froze in shock at seeing him standing on that rail...

It's not like we are slothful parents...  I mean for heaven's sake, we take every precaution we know to take, and can take...  We live in a state of financial ruin in providing for his safety, treatment, and care.

The trampoline is enclosed with a net...

There's a deck around the trampoline with rails in case he should have a seizure and fall while getting on or off the trampoline...

We have non-slip edging on the stairs of the deck to the trampoline...

Padding on the floor of the deck in case he has a seizure and falls...

Not to mention what we've done in our house for his safety...

Yet still, with all those things to help protect him from dangers we can think of, we often find him in precarious dangers we never even dreamed of. 

Can you but for a moment imagine the unfathomable stress in living like that?

Not only having to try and protect him from dangers you can think of, but having to have a crystal ball to see and prevent dangers that you could never even think of!

Obviously my crystal ball is broken in that respect.

Sigh...

Not one second of him being out of sight can be assumed to be safe.  I mean, when I left him he was jumping in a fully enclosed, fully padded trampoline.  The next moment he is walking on a tight rope 7 feet in the air with no safety net below...

And it's not like I could tell him to get down.  The slightest agitation or fear in my voice would have startled him enough to slip or fall.  So I had to ever quietly and cautiously moved toward him.  As I got closer, my only lighthearted moment was in that by the expression on his face, I think even he was thinking this might not have been his brightest idea.  He willingly reached for my hand and I essentially lifted him down...

God and his army of Angels were surely working overtime in protecting him that day.

I guess my next purchase is a security camera outside facing the trampoline so I can see if he begins to climb up there again...

Yay, more expenses......

It's all so unreal.

I wish society, our family, our friends, could get but an inkling of what this life is like.  The constant...  The ever so constant...  I mean, what do we build next? A large net around the deck that extends 20 feet in the air with foam blocks filling the yard should he climb again.... and gawd-forbid, fall?   

The stress of what could have happened....

Well, I guess if there is always a silver lining, I could look at it this way...

Next time I share that my son has "autism" and someone asks, "Oh, so what is his gift?"  (Think Rainman and how everyone assumes that every "autistic" has an incredible ability that somehow overshadows that fact and makes it magically ok that they are severely affected by that "autism"...) I can answer that his is being fearless.

And that will make him having autism ok...

(Until while standing up there he suddenly has a seizure and falls and dies!)



#autismliveshere

#andwiththatunimaginablestress

January 12, 2018

A view of HOPEISM...



One cannot fully appreciate what they have accomplished until they look down and see just how far they've come...
The journey of a thousand curse words & complaints begins with a single selfie...


It's hard to put into words what these pictures represent to me in a profound personal discovery moment I had high on a mountain while vising my son and daughter in California over Christmas.

I wanted to write and share this for New Year's Day - but alas the words haven't been properly formed until now.  And even now, they still don't seem quite there yet...but you know the saying, "...each journey must first begin with a single step."

This is my step.

And why that despite so very many thoughtful friends urging me to write a book, I could never.  I am constantly growing, maturing, changing.  On each of my blogs, I strive to be relevant - and in doing so that often means going back and reading what I shared - and adding to it wisdom learned - thoughts made clearer.  As long as there is breath in me, there will never be a "the end" and a period.  Nothing in my life is that definite.  Finite.

These blogs, my facebook posts, are my ministry,

My book,

Ever changing,

Never ending...

But I digress.

Back to my mountain...

My Navy-son took us to a remote training location used for teaching SERE students how to "Survive" "Evade" "Resist" and "Escape" enemy capture.  When they say "Remote" - they really do mean "R-E-M-O-T-E" ---as in no trails in the mountain.  No facilities, no help, no one anywhere near there, nothing.  While he could not tell us anything about his training or experience in SERE as a student or now as an instructor, it was an awesome experience to see a glimpse of where he spent, and spends, his time in the Navy!  Todd and I have loved that aspect of our son's Navy journey -- that we have made it a priority to at least be near, if not where, the most torturous parts of his journey occurred.  We spent a week on the very beach and the very jetty and the very ocean that he endured BUD/S "Hell Week" on, over, and in.  We spent an entire day on the very mountain he had to survive SERE school "finals week" on.

It's probably a good thing that I didn't fully comprehend what exactly Matt meant when he told us he was taking us to the mountains in the Navy remote training site for a hiking adventure.  He wanted to take us to the peak where there is a rock and an American Flag and a book that the few who make it there sign their name in.

If you look at the pictures at the beginning of this writing, the last one is from where we began our journey.  The highest of the peaks you see waaaayyyyy behind us was our destination.  The flag, the book, was on that highest peak.  But first we would have to follow a sandy riverbed that was challenging in itself.  Walking a few miles in soft sand that slowly inclined was not the easiest way to begin an arduous hike up a mountain with no trail.

I guess to describe our little group hiking would be to say that Matt scaled the mountain like a "graceful gazelle" and I felt more like a heaving hippo having a heart attack with each step.  Todd was in beast mode somewhere in between!

There was no shade on the path we were on.  I can't say trail because there was no trail.  We just had to literally forge our way there by following natural erosion openings in the brush and rocks.  That there was no shade and that Todd was getting altitude sickness necessitated that we had to make the decision to go back down after we reached the first of many "false peaks" before reaching "the" peak.  We were close, but no cigar.  I asked Matt how much farther, and he would look at his gadget and assure us, "one mile...".   I think though, that was more "as the crow flies" than "as the fish crawls!"  Team Guppy is all for one and one for all.  There would be no leaving anyone behind.  While I do feel that eventually I would have made it with Matt being a "Suck it up buttercup!" drill sergeant, we would have had to have begun our journey much earlier to allow for my inch-worm crawling and clawing my way to the top.  At my pace we would have reached the peak near sunset, and we had no flashlights to help guide our way back down!

While I was disappointed that we had to turn back - once I dared stand up at the peak we did make it to - the view around me was just breathtaking.  The first two pictures above are the view from where we did make it.

I could be nothing but proud of making it that far.  As hard as it was, as terrified as I was in climbing the steep parts, it was so worth it.

And I think that is the point that was so profound to me.  That was such a personal "a-ha" moment for me in my "Life with Autism, Seizures, and a side of PANDAS."

When Brandon was diagnosed with all that he is diagnosed with because of his vaccine injury, it was like someone dropped us off at that remote training site.  No trail, no map, no help, no nothing.  With few exceptions, we were simply left to forge our own trail and painstakingly find a way to the peak of that mountain of healing, independence, -- whatever the goal may be for each vaccine-injured person.

As the title of my blog states, very much a journey from hell to HOPEISM.

So very often in this journey and the one that day on the mountain, I felt I could not go one more step.  Endure one more moment.  One more second, minute, day, week, month, year.

Yet like that day for me on the mountain, as hard as it was, as scared of heights as I am, I did manage to crawl one more step than I thought I could.

And I was so proud of that.

None of us on this journey give ourselves enough credit for that.

Most, like me, give ourselves no credit.

All we see is the climb.

Never the view.

I think for the first time in this life, that day on that mountain, I understood exactly how Brandon's life has forged my own.

Not that "we" in this life of vaccine injury are any better than anyone else - but we are deeper.

We are much deeper.

The  realization of that seemed to take a world of inadequacy off my shoulders.  It was no longer seeing all that I can't do or be because of the constraints of vaccine injury - it was look at how much we dare to do with the few precious moments we have free from the constraints of caring for someone with vaccine injury.  We do more, feel more, embrace more, endure more, and are thankful for more.

A New Year's Devotional from Max Lucado was titled, "A View of Heaven" and described this personal discovery I had so perfectly.   Those who do not live the life we must will be inspired by his words no doubt.

But to those who live the life that I live --

I hope it serves to bless you in knowing just how deep you are.  How you already know and experience the last sentence in what I am about to share...with each skill learned, each new morning of hopeism you wake up with after each sleepless night of hell, each new treatment that works, each healing experienced...each day on your journey...

_________

A View of Heaven...

He will do what he promised he would do.  I will make all things new, he promised.  I will restore what was taken.  I will restore the smiles faded by hurt.  I will replay the symphonies unheard by deaf ears and the sunsets unseen by blind eyes.  The mute will sing, the poor will feast.  

I will make all things new.  New hope.  New faith.  And most of all new love.  The love before which all other loves pale.  The love you have sought in a thousand ports in a thousand nights.  This love of mine, will be yours...

Max Lucado reflects on those truths:

What a mountain!

Jesus will be there...

Believe me when I say that it will be worth it. 

No cost is too high. 

Whatever it takes, do it. 

It will be worth it. 

I promise.  


One view of the peak will justify the pain of the path.
__________

I cannot put adequately into words what that day on that mountain and that morning reading those above words meant to me.

How it changed me and the view I had of the drudgery of my daily life.

All I could focus on in 2017 was the pain of the path.

Then on 12/27/17 at the very end of the year, that mountain, those words.

Finally...

Finally, I could appreciate that one look at the view.

All the good that this "Life with Autism, Seizures, and a side of PANDAS" has brought to our life that truly counts...

And for but just a brief moment in time, forget about the pain of the path.

~ ~ ~

So when you see a parent of a vaccine-injured (autistic) child, give them the respect and admiration that they deserve.  Do for them anything you can to help ease a bit of their burden.  But whatever you do, just do not tell them that you don't know how they do it...that you could never do that...

They aren't on a carefully marked trail.

They don't know how to do it.

And above all - they never wanted to have to.

Unlike Team Guppy that day, they didn't choose to go to a remote training site and climb a mountain with no trail and no map and no help and no peak in sight.

They weren't given a choice.

They had to find a way up that mountain.

And no matter how long it takes, how many setbacks, quitting and going back down is never an option to reaching that peak.

That peak where each of our children's names are written in the blood, sweat, and tears of those who never left their child behind.  Of those who carried them, albeit kicking and screaming, all the way from hell to HOPEISM.

And who do it each and every moment of each and every day.

What we attempted that day was good.

That our Navy-son Matt actually made it there was better.

But what each warrior parent does each and every day in caring for their child with vaccine injury, autism, --- is far GREATER.

#NDCQ


Few names are in this book at the peak of "SERE Mountain" at the Remote Navy Training Site.  While I did not make it to do that, I can smile in that perhaps my name is written in a more important book:  God's book of eternal life.
My Navy-son Matthew did make it to the peak.
I may not have made it to "the" peak, but the view from the peak I did make it to was pretty amazing...

Navy-Matt at the peak.


June 28, 2017

Of being a bubble-wrapped blueberry...

This writing won't be for those who go through life with rose-colored glasses.

It certainly isn't for those who "celebrate" National Autism Awareness Month.

It is for those who dare to take the time to read about the reality that is life with vaccine injury.

Life with autism...  
(Which for the majority, is life with vaccine injury.)

Which for the majority of those I know, is very much the title of my blog in being a lifelong journey from hell to HOPEISM.

I want to share about a brief visit I had with one such warrior mom who I will not identify...

I have to share it because the reality of her life needs to be known because it represents the reality of so very many in this autism community.  The reality of  our lives that is rarely shown because if it were to be rated as a movie, it would have a "graphic violence" warning.  The reality of our lives is so far from what is portrayed, how we actually live, it's pathetic.  That so many like this mom are in every community, is a horrific tragedy of epic proportions.

And yes, I'll say it.

It's a tragedy that overshadows the holocaust.
I do realize that what I'm sharing here, is but the tip of a very large iceberg in how so many of us must live.  As bad as what I've seen, experienced, or know of is, there are those who live with much worse.  How much worse?  That they would murder their children rather than live one more day with no help and no hope that help will ever come.  That they would rather commit suicide because death is kinder than life.  The iceberg of an entire generation of severely affected adults with autism (vaccine injury) will sink this country when the collision comes of when they are left to the state after their parents die or simply cannot care for them any longer.

I was just so moved by the stark reality of what I saw in how this warrior mom must live that I cried on and off the rest of the day.  Not in pity of her, but for the situation she is in.  She is a fighter.  She deserves such enormous respect.  It is the situation that moved me.  The all-too-familiar situation of those who care for adults with autism who are bigger and stronger than they are.

I went to her house to pick up some supplies that she didn't need - and after a brief hello as I'm checking on my son in the car and she's checking on her son in the house - she showed me her new outfit.

Her son, like so very many, has behavior outbursts and meltdowns and at times pretty significant aggression.  Like so many of us her house is adorned with patches from holes knocked in the walls.  For some, it's from kicks or punches from innocent adults who have no communication.  No way to express hurt, frustration, chronic inflammatory illness, or any number of things that vaccine injury or "autism" has triggered.   My house is adorned with many such patches from holes in the walls from where my son fell because of violent seizures.   A few weeks ago we were inaugurated with our "first".   Our first hole in the wall that he actually kicked.  It was late at night and instead of our son being able to read a book or watch tv if he wasn't tired - he laid there repeatedly kicking the wall.

(please ask us if we thought about disciplining him to not do that)

You see autism first hand even walking up to her house.  The glass pane on her front door is covered in tape from a meltdown.  I keep mentally thinking that I want to have my husband go replace the window for her, but then he's still got a few holes in our home to patch.  What makes me so sad in that, is how I know we can't help her because we don't have the money to.  There are so many things we need to do that we can't.  It's always like that.  It is us helping each other.  Or at least wishing we could. With few exceptions, no one around us in our family, our church, our community seem to get that.  Maybe if we wore dirty ragged torn clothes and lived on a street corner someone would finally notice our need for help.  Too bad our need isn't that obvious.   On the surface, we're just like any other typical family.  The "disability" in our life nothing that at a quick glance stands out.  Many, like this warrior friend of mine, live as I participate in my exercise class....  The "suffer in solitude and silence" mode in the back corner of the room.

For many, their suffering is very much silent.  For fear.  Fear that though they are doing everything in their power to help their child, someone will judge them and make them out to be the bad guy.  Threaten to take their child away, as if there's a better place for them out there!  Let's not blame an entire system that has failed our kids, let's blame the parent.  I was a victim of that in how I dared to share bloody pictures of the aftermath of my sons seizures.  Instead of anyone offering to help me figure out what caused them (or who - pharma) I was turned in to Adult Protective Services for sharing that reality of what vaccines did to my son so that others would know how to avoid that happening to their son.

Every time I go to her house and see her front door, I think how it is her church, her family, her neighbors who should rally to fix that door for her.  But sadly, much like when my husband was abruptly laid off from his job, it is our very own community who rallies for us and who help us despite needing help themselves.  In our case, a GoFundMe was set up where people who had no business giving anything because they were as broke as me - gave what they could.

Every.One.Of.Us. need a GoFundMe for something in our lives with autism.

(please suggest we seek state services/assistance for our loved one with autism)

How this friend keeps a sense of humor about her is beyond me.  I admire her, and so many just like her so very much.  Warriors living with such extremes in their children, never knowing if one moment will be a smile or a smack in the face.  Never knowing if the day will be yet another trek through hell or the HOPEISM of as good a day as we can hope to get despite all our children must endure.

Like so many of my friends, this one is single.  Her husband left her with a very significantly affected son who is taller and stronger than she is.  Like so many of my friends, she's been in a crisis situation and has had to call the police or ambulance during yet another meltdown that our kids have that is triggered by who knows what... It can be as complicated as pain they can't communicate or that you did some sequence out of order and they just couldn't handle it.  Whatever the cause, the outcome is always the same.  Police arrive and the only help they can give is to handcuff a severely affected adult with autism.  Which makes things worse, not better.  Our kids have been tasered, and in a few instances, shot.  Some suggest taking them to the hospital which is hilarious because there aren't even any hospitals that are properly equipped to handle the complex needs our kids have.  There is no 9-1-1 for autism.  There is no sensory friendly "hospital" for autism.  There is simply no tangible, appropriate help for the brand of autism that most I know have.

For this mom, all there is, is bubble-wrap.

And a whole lot of faith.

And humor.

When she showed me her new dress, for a split second I didn't know whether to laugh or cry.

I did laugh.

It was hysterical in a most horrific kind of way.

A grown woman, a dear friend, reduced to having to make a body shield out of bubble-wrap to protect herself.  Bouncing off a wall would be much better than being obliterated by it.  Her bubble-wrap dress was complete with duck-tape seams and velcro to attach her phone to it in case she needed to call the non-help 9-1-1 help.

She's pretty darn talented.  This bubble-wrap dress had a crew neck opening, tank top straps, then went down to about her knees with duck tape side seams.  I wanted to ask her if she could make me one with Camo-tape seams for one day if I need such protection.

And maybe some princess seams because, "Does this bubble-wrap make my butt look too big?"

Sigh........

If you don't live this life, I want you to read those last few paragraphs again.

I want you to fully digest that in a society where we have the technology and intelligence and resources to do most anything - we have left mothers like this one with no help, no resources, and very often no hope that things will ever change for them.  Society has given her nothing except being reduced to making herself a bubble-wrap protective shield of a dress for in case her son has yet another meltdown and through no fault of his, takes it out on her.

With all of our American Red Cross and compassion and help for everyone in every other country or human situation, what we've told this mom is that all we can muster for her is bubble-wrap.

I told her she needs to patent that design because there are thousands of mothers out there who need that dress, or who will before they know it.

She could sell them online.  Custom made with your choice color of duck tape for the seams.

With the epidemic numbers of autistic adults who have violent meltdowns, she would be rich.

Allow that to sink in.

This friend is pretty petite in size, so when I noticed before she modeled her bubble-wrap dress that her bottom half was a bit - bigger - I figured finally she was able to have time for herself and actually eat something.

But then she showed me her other design for everyday wear.

The bubble-wrap dress mainly for during a meltdown.

The shorts for daily wear in case her son shoves too hard or something.  She took the waterproof pads that come with deliveries of incontinence supplies, and stuffed several layers in her pants all around her hips.  If she was forcefully shoved, at least if she fell her hips wouldn't shatter.  She would just bounce.

I want society to read that again.

What other parent in any other disability is reduced to bubble-wrap dresses and puffy pants?

None.

No other.

We had a good laugh about her new wardrobe, but make no mistake, it isn't funny.  We can laugh because we live it.  It's the only defense we have against insanity.

When I left her house, I didn't think I had any room left in my heart for another scar, but that visit put one there.  I cried all the way home for her, for so many others like her.  I cried that one day it could be me being reduced to wearing bubble-wrap to protect against my son.

The worst I've experienced so far was a hand or arm too close to his teeth when he was mad about something or hurting.  When trying to prevent him from hurting himself, at times I've been inadvertently slapped.

The injustice against us and our kids in these situations is nothing short of horrific.

I've had friends be out in public and suddenly their adult son went from happy to meltdown in a split-second.  Instead of help from police called by perhaps well meaning bystanders to help them, they were punished, arrested.  Absolutely no awareness from those whose job it is to help. Making a horrific situation become nothing short of a living nightmare.

I rarely take my son out in public because of the fear of what has happened to others, happening to me.

My friend shouldn't have had to even think about making a bubble-wrap dress and puffy pants making her look like the "Blueberry Girl" in Charlie and the Chocolate Factory.

She needed to have a list of phone numbers of people, of adult men who are trained in autism-care who she could call to come protect her and her son during a meltdown.

But where is the ambulance for that?

Where are the trained volunteers for that in each community?

No where.

Where are the short-term crisis centers where parents at the end of their rope could bring their children for behavioral intervention while they can catch their breath?

No where.

To even attempt to do that for every community would financially break cities.

Would financially collapse our country.

So who do we have to turn to?

Our families who give to most everything else except to the person in their own family who needs the help.

Our churches who send mission teams to every other country except for the autism community in their own back yard.  Yes, they may "know about" Jesus, but perhaps we need to realize the equally important aspect of them actually "witnessing" the hands and feet of Jesus...

Our society who would rather pretend we aren't there or call the cops or CPS on us instead of taking the time to care, comfort, or collaborate with others in helping.

There are few exceptions, and for that we are thankful if we've been the recipient of such blessings.

But for most, help is few and far between.

If at all.

For the most part what I see is that this mom has a bubble-wrap dress, puffy-pants, and still a taped up front door window.

And as I laugh hysterically at the picture she sent me of her modeling her new wardrobe, with the smile that shows both grace and strength despite the adversity, -- all I can think of is what the helmet she'll make next will look like.

Because we all know, insurance or medicaid sure won't pay for a real one for her.

March 19, 2017

Of sparkling, sweating, and surviving...


Cue Rocky music while reading... So... in my ever-present quest to pretend I have a life or can achieve personal goals outside of caring for my son who is vaccine injured - I decided to not just do my usual lap swimming at the YMCA this afternoon; but to venture forth and try a muscle conditioning and boot camp class. I mean, why not go for a total body breakdown in doing two classes when one would have done me in just fine? That I haven't done a group exercise class since what seems like 1974, is of no consequence. It's like riding a bike, right? You never forget how to do it... Well, apparently you may not forget, but your muscles do. I probably should have listened to my gut instinct to run when the instructor noticed my "Spartan Finisher" shirt I was wearing and said, "Oh, you were there too? So was I! After the race my buddies and I stayed and did the Hurricane Heat and pushed out cars that were stuck in the mud-pit that was the parking lot!" People like him who do Spartan Races are actually fit enough to truly do Spartan Races. I merely try to push myself, overcome fears, and do what I can and finish without needing surgery. Even that didn't go so well last year when I indeed needed surgery after and epic bad landing going over the Warrior Roast fire jump. But... I watched what everyone else was doing and I did my best. The instructor was great about giving modifications for those moves that not everyone could do, but I knew I was the odd fish out when he seemed to be looking at me when he shared about "alternative" moves altogether. I'm thankful that vaccine injury and Brandon taught me long ago to not worry about what others think of me. I mean, I've been in Wal-Mart at Easter with an open bag of jelly beans trying to 'appease the beast' by giving jellybeans to him one by one so I could get out of there for once without leaving a full shopping cart behind and had Brandon decide I wasn't giving them to him fast enough and proceed to grab the bag from me sending an entire bag of jelly beans bouncing all across the main aisle. Being in that class today was much like being in the middle of the main aisle of Wal-Mart waiting for the jelly beans to stop bouncing so I could run from the store... But I digress... As hard as it was, it really felt so good to do something new. Something for me. As painful as it was, I enjoyed it. It was a sense of accomplishment. I work hard for Brandon, for advocacy, in trying to keep our home from being condemned by the health department, and somewhere in there I do try to give attention to my husband. But often those things never seem finished. It is a never-ending process. The vaccine injury and working to heal my son or help him the best I can is something that will never be done. They are things where the rewards are few and far between. Things where I have to squint really hard to find the rewards at all. I guess that's why Todd and I love to do the obstacle course races we do. At least there we get to cross the finish line as a reward to all the hard work, challenges, and endurance. For me to even get to go to these classes, to swim, means that Todd has to be with Brandon. We can't even be like the couple I followed in the class who dropped their child off at the Child Watch Center and then went to class together. There is no "Child Watch Class" for 23 year-old's who need assistance with toileting. It was a downer realizing all that vaccine-injury has taken from me. I was jealous of the woman on the front row with the heavy weights and no modifications. I bet she didn't have to spend every spare moment caring for her adult son or researching ways to help him or advocating for him, or trying to find a day program for him or help on the weekends so she could have an actual "weekend" with her spouse. It's hard facing what you could be if only vaccine injury didn't happen and change everything. I mean, everything. I tried to boost my self-worth by imagining myself asking the elite in class if they could do those weights with no sleep for a week, if they could clean up leaky-gut episodes without vomiting, and if they would dare put their bare hand through a bathtub of diarrhea-filled water to pull the plug out. I wanted to ask if they could survive a meltdown on a full moon or endure yet another service door slamming in their face. Sure you can do power squats with a thirty pound bar on your shoulders, but can you walk through each day with the weight of your child's entire lifetime on your shoulders? Can you listen to HMMMMMMM, HMMMMMMMMMMM, HMMMMMMMMM all day and night and not go bat-shit-crazy? "Yeah, I thought not!" So I went on with my bad-self and all my modifications, determined to stick it out and cross the finish line. Numb arms and jello legs. I did have one thing going for me to be proud of. I invented a new move to replace the burpee. Warriors like me who have vertebre on the verge of touching each other because of the years of awkwardly lifting a dead weight brick of jello off the floor after a seizure have no business doing a burpee that puts extra pressure on the spine. So instead I did a squat and jumping jack as one "burpee-like" move. "The Squack" I called it. So when that move becomes the new burpee-alternative on the Spartan course, remember that you read about it here first. Mercifully that class ended, and for the Boot Camp class we went outside to the fields. For the warm up the instructor pointed to a fence that seemed like an entire football field away - and said to sprint there and back. I looked at him and laughed. The only time I sprint is if I'm in one room and Brandon is in the other and I hear him start to have a seizure and sprint there to catch him before his head hits the deck. I wanted to tell him that for this class, the only way he would see me sprint is if he told me the cure for my son's seizures is at that fence line and the first one there gets it. I can live with autism, that's nothing compared to seizures. But give me a cure for seizures and I be like, "Get outta my way boys-n-girls and let me show you how sprinting is done!" But, ..... I just groaned and did my slow jog of shame and made the rest of them look good. (ok fine, power-walk) I mean, didn't Jesus say in Matthew 20:16 that "many who are last shall be first?" All and all it was a great day of new beginnings. I can only get better from this point forward. It is that warrior mentality that helps me get through each sucky moment of autism or seizures. And to the woman in front of me with the "I don't sweat, I sparkle" shirt? I may not have sparkled today, but I survived. And in my life, with all the trips From Hell to HOPEISM that I've had to endure, -- that is everything.
#NDCQ