On being forged into a warrior mom
If I could summarize our journey from Hell to HOPEISM, it would be in my faith, which I call HOPEISM. It has been my weapon of choice to get me through each battle I have had to fight in my mission to win our war called life with autism and seizures. Vaccine injury to be more specific. It would also be in committing to heart, soul, & mind the words and motto's from Forged, NDCQ, the Lone Survivor, and Levi Lusko in his book, "Through the Eyes of a Lion." I will be forever grateful to the inspiration, encouragement, and mental fortitude found through all of them collectively. Because of that, I am not allowing this tragedy of vaccine injury that has come into our lives to be an obstacle to being used by God. I am instead turning it into an opportunity to be used like never before!
This blog is dedicated to Brandon. His life has been forged by difficulty, obstacles, & all too often because of seizures - pain, blood, broken teeth, & broken bones. Yet through all that he has shown such fortitude. The bravery, strength, & resilience of a true warrior. He taught me that having strength through adversity means that even if you lose every battle, like the Lone Survivor, you never quit fighting until you win the war. That in the words of "NDCQ," you keep "dreaming," keep "daring," & keep "doing." As Team Guppy has yet to be able to escape vaccine injury, we have no choice but to as Levi Lusko writes, "Run toward the Roar." God has indeed given us such incredible power in enduring such impossible pain.
Some days the HOPEISM in that simply takes my breath away.
April 11, 2019
I thought about titling this "Sunshine under our Umbrella" - as that seems appropriate too...
But in light of Easter that is fast approaching - I thought I would go for something a bit more spiritual.
This picture taken by Brandon's caretaker at his Day Program pretty much sums up this "Autism Awareness Month" of April.
I'm mesmerized by the picture really.
Couldn't be more perfect.
His eyes - bleary & bloodshot - say everything there is to say about the bravery of his struggles of late.
The fresh wound - not from a seizure fall - but from a fall from being so wobbly and weak from having the flu and bronchitis back-to-back.
I'm not sure why so many injuries must happen to his precious face. Why so many times he has broken off a front tooth.
I guess it's satan's way of mocking us. He can't pierce our spirit, or Brandon's, so instead he goes for the smile, the scars.
Speaking of scars -
Our PTSD scar has been ripped open of late.
Our second major PANS attack sucker-punched us all in the gut - ripping open the scar from the first PANS attack and leaving us once again to bleed profusely.
We felt like cornered animals - scared and lashing out at the injustice our "Life with Autism, Seizures, & a side of PANDAS" gives to us.
Our emotions were raw and real in an indescribable kind of way.
It's hard to put into words the emotional rock bottom feelings we've had.
The thoughts that crept into our minds in the depth and darkness of our PANDAS-pit.
It felt like a slow, painful, emotional drowning.
And Brandon being non-verbal - I suppose the gnashing of the skin on his hands barely scratched the surface of what hell his brain-on-fire was going through.
Much like Jesus did at the injustice happening in the temple - I wept.
To watch what vaccine injury does over and over to our innocent son is an unbearable pain.
Most definitely worse than measles.
I can't help but put each of our suffering in the perspective of Jesus' journey to the cross.
Perhaps that's why this picture mesmerizes me in such a spiritual way.
I see Jesus' suffering in Brandon's eyes.
Those Beaten, Bloody, Bloodshot eyes not by a person - but by vaccine injury.
I feel Mary's helplessness in my soul.
This picture --
Eyes that still manage to sparkle through such suffering colliding with a smile that silently speaks of such supernatural survival.
I look at that picture and feel such shame.
Such shameful thoughts I have had in the bone-tired traumatic delirium of being scared to death of having to go through what we had yet again gone through - for the rest of our lives...
It's just too much to endure for as long as we must.
Every grumble uttered by him making me want to run and hide in a fetal position lest it's another attack.
It's unfathomable what this severity of vaccine injury puts you through.
We warriors are tough.
We have no choice.
But even the toughest among us sometimes take a knee.
If only for a moment.
Each thing we go through leaves a scar. We become more resilient. But then each time the wound is reopened as in another PANDAS attack - that scab is ripped off and the blood gushes again - and we are left to pick up the pieces of our PTSD in utter numbness until it scabs over again.
That's the best way I can describe my now.
Heartbroken for my son.
Some people drunk-dial an ex-boyfriend.
Last week, very much sober, I called group homes to see if someone could take my son if just for a weekend.
We needed time to heal.
Time away to once again think of our son as the brave warrior is he in that picture.
And not the rabid-dog-behavior that the PANDAS-attack turns him into.
Such a horrible way to describe it.
But it's true.
When in that state, Brandon is not Brandon.
And it is horrific to witness such pain and agony he must be feeling in the autoimmune malfunction brought on by something as tiny as a piece of pollen, bacteria, virus....
But alas - there was no where to turn for such help in such desperation.
There is no appropriate help for those like us.
For the vaccine-injured like Brandon.
But as HOPEISM (and Psalms 30:5) would have it - "Joy" does come in the morning.
Perhaps for us not all mornings - but at least some mornings!
During this time - Brandon has had the miracle of being 30 days seizure-free.
We haven't been 30 days seizure-free in gosh - at least the last four years!
I have to laugh the laugh of a lunatic relishing in insanity - in asking the heavens why....
Why couldn't we have had these last thirty seizure-free days with a "typical" Brandon free from the flu, bronchitis, PANDAS, so that he could have gained back precious pounds that seizures have stolen?
But alas we have learned just how futile those questions are.
In the words of Max Lucado, I must stay away from those "briars and brambles" that threaten to snare me and instead simply "reach out for the pierced hand that is extended to me from the fog."
I don't know that in the storm that is our vaccine injured "Life with Autism, Seizures, & a side of PANDAS" that we will ever not need our umbrella, but I am ever so Thankful, Grateful, & Blessed for those times the sun shines under it.
- notes of encouragement from fellow warriors
- an unexpected grant for a month's worth of medical marijuana
- a card in the mail from a care group at church
- Grandparents coming to care for their Grandson so that we could travel to go see ours
- Thirty days seizure-free...
A Miracle in the Midst of our Mayhem
HOPEISM in our journey through hell.
On the Edge of Crazy yet not too far from Sane,
Michelle M. Guppy
January 4, 2019
It's days like today where the only person I want to see is Mary.
Even more than all my fellow warriors in this "Life with Autism, Seizures, & a side of PANDAS" - she would be the only one who could truly relate to the sadness I feel.
I mean, just that statement alone is a sucker punch to my soul.
Today is Brandon's 25th Birthday.
I should have woken up giddy with excitement at the celebration of a milestone year Birthday! He is 25 years old! A quarter of a century of his life lived! I should be smiling as I reflect on all he's accomplished. I should be smiling with him (or rolling my eyes at him) as he shares his goals and adventures for his next quarter century as he blows out the candles of his gluten & casein filled Birthday cake!
And in all honesty, I do have the excitement HOPEISM brings.... that his next quarter century will bring help, hope, healing. I do know how far he's come from those early days of darkness, diarrhea, head-banging, and self-inflicted solitary confinement of preferring to be alone in his room.
But instead I woke up to the sound of him banging the over-sized rocking chair in his room against the wall.
I woke up to him being soaking wet and freezing.
His vaccine injury cared not that it was his Birthday.
And so while every other day of the year I relate to Jesus through faith, through HOPEISM, through HIS PROMISES of grace and mercy and love --- today --- today I relate to Mary. The mother who had to watch helplessly as her son went through things unimaginable.
As I sit here drinking my coffee, I seek an espresso shot of her kind of faith. The faith that bravely says to "be unto me as you have said..." All I want is for it all to go away! I seek her unwavering trust in knowing the journey will be for a higher purpose that she was told, whether fully comprehended or not. At least she knew.... I don't know the purpose. And the only words I can whisper at this moment are why..... Why, Lord?
I suppose my faith assures me there is a purpose and a reason.
But my flesh simply cannot understand what that might be, or why.
And so I sit here wishing I could ask Mary how she did it.
Through two very different scenario's that I dare not compare, I would love to ask her through my tears how she endured watching her tortured, beaten, & bloody son stagger down the path to his crucifixion on a cross. I would love the validation that she perhaps hated that, as much as I hate how my son has been tortured by vaccine injury. As much as I hate picking up my beaten & bloody son up off the floor after a seizure caused him to fall so forcefully he either lost teeth or needed staples.
I would love to know if she perhaps had slight, momentary cracks in her faith armor where she wished instead that she was watching her son walk down the aisle to the alter to take his fiance's hand in marriage - instead of having to watch him stagger down the road carrying his own cross that he would be crucified on.
I know with all that is in me how much my Birthday wish for him would be to watch Brandon walk down the aisle to his bride.... or with open arms welcome his newborn son in his arms....
Knowing he will never experience either.
Every day of every year, we warrior mothers must be supernatural.
We must be brave, strong, and steadfast.
We must never allow ourselves to worry.
We must never, ever, have even but a moment of weakness.
We must be in all sense of the word, immortal...
As no mere human could endure what we must, for as long as we must.
For this one day I would like the comfort of Mary's hug as she understands those emotions. As she perhaps herself fell to her knees and just wept at the injustice.
As she was but for a moment as I am in this moment...
But alas that coffee-talk with Mary cannot be, and as I allow the crack in my armor to remain but for a moment, I must simply do as Mary chose to do...
Humbly accept what is.
As I use these tears to make cement to patch that crack in my armor, I vow to continue to face my giant.
"Life with Autism, Seizures, & a side of PANDAS."
YOU SUCK TODAY.
(you suck every day, but you especially suck on Brandon's Birthday!)
And as I shout that to the universe, as I face my giant, I win for no other reason than simply being brave enough to face this day...and every day for as long as I must.
Still smiling (albeit through tears).
Still too stubborn to ever let satan win.
Still somewhat sane!
~ ~ ~
Acceptance is not submission; it is acknowledgment of the facts of a situation. Then deciding what you're going to do about it.
-- Kathleen Casey Theisen
I have decided long ago what I will do about vaccine injury...
And what my Birthday gift to Brandon shall always be...
I'm going to NDCQ.
I'm going to HOPEISM.
I'm going to continue to speak truth about what happened to my son.
I'm going to continue to advocate and support for change so vaccine injury never happens to anyone else.
And I'm going to continue to pray that one day Brandon's dry bones will come alive...
That the dry bones of the vast army of children who have been injured by vaccines come alive!
~ ~ ~ ~ ~ ~
This picture reminds me of a quote I read once....
When life hasn't been easy, when we have regrets, when we've been through hell, --- it's ok at times to look back - to learn from those mistakes - to see how far we've come from those difficult times - but to above all --- just not stare. Not look back long enough to let those things define us, consume us.
I agree with that.
This morning for a few brief moments, I have allowed myself to look back. To see all that has been, all we have been through.
But I can't help but stare.
Stare at this remarkable, indomitable, bravest of warriors.
This crazy, mad, wonderful creation of God who I love with all my heart, all my soul, and all my mind.
The hand of the Lord was on me, and he brought me out by the Spirit of the Lord and set me in the middle of a valley; it was full of bones. He led me back and forth among them, and I saw a great many bones on the floor of the valley, bones that were very dry. He asked me, “Son of man, can these bones live?”