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.
January 27, 2018
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.
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
|Insert image of Brandon standing on that top rail...|
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...
Where there is nothing to hold on to?
Brandon was standing on that.
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.
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...
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.
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!)
January 12, 2018
|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...|
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,
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...
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.
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, 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.
~ ~ ~
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.
|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.|