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?”
August 23, 2018
Celebrating one year of being a part of this Treasure.
Of pure JOY.
One year ago after so many months of being without a program for our son, a friend who is the director of JOYful Learning Center invited Brandon to be a part of their program.
Countless other Day Programs turned him down.
One invited him.
I cannot tell you the dismay at going from center to center bringing my son for an "interview" to see if he was worthy of their time and effort.
To see if his needs were minimal enough for them to serve.
To see if his funding that comes with him for such a day program was enough reimbursement for them to hire additional help.
Most often, that answer was no.
I can't describe the mind-boggling sense of worthlessness one is made to feel in this situation.
To bring your child, one you well know how difficult can be, to some strange place to be evaluated as to if he's worth serving or not.
And that's essentially what it comes down to.
Does he pay enough to make it worth hiring extra help?
Are his needs too much for us to mess with?
Each interview at each place more deflating than the next.
Within the first few seconds of arriving at most centers, I could see that we weren't going to work out.
I mean, the first place had motion sensor front doors.
Wandering risks for most like my son!!!!!!!!
How much easier could it be for them to escape???
Other places only served the high functioning who could with minimal assistance care for themselves, allowing for a high caregiver:client ratio.
Brandon is pretty much the definition of 1:1.
Other places, when you walk in and see a giant screen TV with multiple remote stations, you know only the high-functioning Asperger's are welcome there.
Brandon's only interaction with a TV is to stand in front of it and block your view from watching it.
One place we visited it was clear they would take you if all they had to do was cram your wheelchair in a room and call it "computer time". Brandon could not even walk from one end of the room to the other without touching someone it was that packed.
No one was using any computer.
One place that we had high hopes for, we made it all the way to the back to actually get to the point of filling out forms for his funding - all Brandon had to do was sit on the couch. We were within a hair of seeming like we would be welcome...
Then he got irritated at needing to sit still and started rearranging their papers and things...
Anything within reach.
I needed to leave before he escalated further and asked if I could mail the papers when I was done.
They said, "Sure, no problem, thank you for coming in!"
Yeah, I sent the forms in and have not ever heard back from them.
So is the dismal outlook of the canaries who took one for the herd.
The multitude maimed by the mandates of vaccinations....
Those not gone, left to be totally forgotten.
Brandon, like thousands like him, are those who fit no mold. They can't be expected to sit in front of a TV to entertain themselves. They can't be left alone for one minute. They don't sit for endless hours. In fact, they don't sit at all.
That pretty much excludes them from any program I had visited.
On August 24, 2017, Brandon was welcomed at Treasures of JOY.
An adult day program run by a Christian woman who has her own personal stake in this community.
My HOPEISM was again rekindled in at least this aspect of our journey in "Life with Autism, Seizures, and a side of PANDAS."
She knew Brandon's good, bad, and ugly - and accepted him.
The transition to this place easier than most have it. It's hard to trust. But easier when you personally know the person running the program. I mean, Joyce knows my good, bad, and ugly and how I'd hunt her down if someone abused my son!
Where Brandon came from was a strict ABA center. It served him well for many years. But as an adult there comes a time when they need more. Brandon was Brandon. Some things in that no amount of ABA would change and to continually try to force that ends up being more harm than good.
That's where we found ourselves.
Most of these ABA centers have to follow a strict clinical protocol with little room for freedom.
And after all his life in the constraints of ABA - he needed more.
He needed the balance an insurance funded ABA program simply did not allow for.
Once again in this life, we were between a rock and a hard place.
I needed Brandon to have fun, have some freedoms.
I didn't want to always be told that he bit his hands 600 times in a day.
I know why he was.
He was frustrated.
He needed a place where I could be told how often he smiled in a day.
Because he was actually enjoying his day.
The words "Thankful" and "Grateful" will never be enough for what Treasures of JOY, the Director, the staff, even the myriad of other clients - have brought to our lives.
That there is a mixture of all ability levels. Verbal, non-verbal, high-functioning, and totally dependent.
It is nice to walk in (late as always) and have a client greet Brandon by saying, "Good morning Brandon" knowing full well that Brandon will walk right past him and not even acknowledge him.
I've laughed so hard at when a client would attempt to talk to Brandon and the caregiver would remind her that Brandon doesn't talk and she say, "Yeah, I know Brandon...".
Those things mean the world to me...
That Brandon is in a setting where peers know him, and love him anyway!
To know how difficult and trying my son can be, how challenging to care for in the most menial of ways, and yet how the staff still care, still smile, don't quit.........
To have become friends with them, to feel like family with them......
Those are the rare, priceless treasures we seek for our children.
Yet there are so few places like this one.
Is it a perfect place for those like Brandon?
Our adults need more than what their funds will allow for.
His center does the best they can - but they need more.
More volunteers to be able to take community trips.
More funding to hire more staff.
Each day I take Brandon there I am humbled to even be able to take him there.
I am beyond thrilled that such a place exists for him and that his funding pays for it.
But at the same time I am saddened by how much better this program could be if they could have the funding they need, the volunteers they need, the many more locations they need!
If you are someone who can die in peace, never having to worry about what will happen to your grown children after you die, please consider donating to this program who helps those of us who do nothing but worry about that ---
This program that gives us HOPEISM for the now - in that at least for a few precious hours each day our care giving burden is lifted and our adult loved one is safe and well cared for....
Treasures of JOY
Please, donate at the link above...
Thank you Joyce...
Thank you Trish, Jayson, Sydni, ----
Everyone who cares for the precious adults with disabilities or special needs at Treasures of JOY.
August 20, 2018
A testimonial from Team Guppy...
For Autism Rescue Angels
Todd & I have been married for 30 years. For the 24 years of that time that we've had autism in our marriage, I can count on one hand the number of times we've been able to go on a vacation together. A real vacation, one out of our state for a week, a whole entire week, doing something extravagant (to us at least)...
When asked to share what receiving funds from Autism Rescue Angels has meant to us - I thought about that...
And the floodgates of all that our "Life with Autism, Seizures, and a side of PANDAS" has taken away from Brandon, from us as his parents, from us as husband and wife, from his typical brother, and from us as a family unit - came gushing out in tears.
I thought about the endless sacrifices.
It seems that is all we do...sacrifice something.
It's hard to paint a picture with words of both the depth of hardship of this journey and the height of thankfulness for the help received along the journey.
The need, so great.
The help, so sparse.
I guess for me I could describe it in terms of this stage of "Life with Autism, Seizures, and a side of PANDAS" we personally are in...
Where infinite need collides with finite resources.
Where once we had the ability to spend as much as we could - and more - to do anything and everything to help our son recover or at least be out of pain and somewhat independent; we are having to face that we aren't there yet. Such a long way yet to go. But no more money to spend in attempting to get there. It's incomprehensible how little support there is. We have all the insurance in the world, but none of it covers what he needs. Everything that has helped him and that does help him, out of pocket. So many promising things to try, but no funds to try them with as we must shift gears in plan for how to pay his constant needs once we are no longer living to provide them.
It's a horrific place to be.
A sucker-punch that for this past year I've not quite caught my breath from.
Now, more than ever, it will take a village.
A village of those willing to help in whatever way they can - the need for respite, so great.
The need for donations, even greater.
As an adult - allow me to describe his situation in this way. Our son is essentially a homeless person. We have given a vow to love and protect and advocate for him as his guardians - but with that comes no financial help to do so.
We are the only village Brandon has.
Let that sink in.
He cannot care for himself, work, or live independently.
His needs and care are too great for just us.
He needs a village.
He needs many people helping in whatever way they can, and what is most needed, is donations.
The times we have received help for Brandon's financial needs - have been the times we've seen HOPEISM shining the brightest.
It's when we've felt the love of a village.
People donating to Autism Rescue Angels and saying "I want to be part of someone's village" --
That you want to be someone's HOPEISM.
And in a journey where you feel nothing but all alone and isolated....
It is a life raft to receive such HOPEISM in the form of a grant.
Something tangible that says, "We care."
We can't take the burden away, but we can lighten it in this way.
There just aren't adequate words to describe the love felt in that.
Thank you, everyone, who donates to Autism Rescue Angels.
Thank you for being a part of our village in this way.
August 8, 2018
I suppose because I share so openly it is known that my son has suffered from so many seizures for so long, and so when a rookie parent is just beginning the journey, they are sometimes given my name to contact for support...
I sit here and chuckle at that, because the running joke in our home is that I should never, ever, be allowed to answer a suicide hotline. I am way to literal to have the social grace of, well, grace. Or maybe it's because I'm way too deep in "Life with Autism, Seizures, and a side of PANDAS" to have sympathy for the normal stressers of typical people who have the luxury of living a typical life with all the typical twists and turns that I would exchange them for in a heartbeat.
To me, if you aren't a warrior parent or deployed fighting a war, or are a combat veteran, you have nothing to whine about. I know that is a very insensitive thing to say, perhaps I should instead say, "Come live in my house and care for my son for a year so I can catch up on all the breaks, clocking out from work, sleep, weekends, holidays, and vacations I've missed out on over the years and then you can whine about anything you want to."
(those of you who think measles is worse than autism, please be first in line)
But for those in this life I have found myself in, with all these seizures as one of many a-la-carte's to autism - I wish I did have some magic words of comfort to make it all better.
But I don't.
My son has had seizure upon seizure upon seizure.
We've had days, weeks, months, and years of seizures.
We've had absence seizures, atonic seizures, myoclonic seizures, petit-mal seizures, but mostly the grand-daddy of all seizures in grand-mal seizures.
There have been thousands of seizures since our first seizure, and yet each seizure is like the first seizure.
The feeling and response from the very first seizure will never go away.
You will never get so used to it where it doesn't affect you.
Now maybe like me you will learn to cope with it better, but you will never get used to it.
At least I hope not.
Because while you can numb your response with alcohol or drugs I suppose, if you truly become numb to it I think that would make one a bit less human. That your child has all those seizures, a bit more normal...
And it is far from "normal" how this world is trying to desensitize us to the horrific tragedy that has been done to our children.
And it is even farther from "normal" that an entire generation of children have been so maimed that they have these debilitating disorders - seizures merely one of them.
Part of me feels that's a major thing wrong with society today.
It's become numb to injustice.
Numb to what has happened to an entire generation of children.
The enormity of wrong has numbed the desire to make things right again.
I suppose that's why I can't tell someone else how to not be affected, because I have learned that while each seizure chips yet another piece of my heart and my soul, at least I know I am not numbed.
If I can still feel the pain of it, I can still fight it.
And if I have that desire to fight it, I am still alive.
I haven't become a defeated victim of it.
One of the things that make me laugh hysterically, is when I see a post from a typical person living a typical life that goes somewhat like this:
"We've just completed our remodel, certificate, project, -whatever- and life is so good!"
"We just went on our dream vacation -- God is so good!"
I can literally feel insanity setting in when I read those things.
I always use too many words when only a few would do - and in this case I suppose - if I were to be asked how I cope with it all - it would be that I have found a place - a HOPEISM - where I can say that life is good even when it's not, and that God is always good even when my situation is not.
It is, literally, as simple as that for me.
If life is only good for you when everything is going your way, you won't be able to cope. That is a shallow existence and you will not survive.
If your faith is in a god or religion that only shines in the light and not in the darkness, then you are in for great disappointment.
I think that's why I love storms so much.
Those dark, thundery, rainy days.
Anyone can be warmed by the sun when it's shining. But only those who have true faith, true HOPEISM, can see the sun through the darkness. Can feel the warmth of a perfect summer day while hunkered-down in the depth and barrenness of winter. Can feel the presence of God in the isolation of a bottomless pit.
And our seizures seem to be that.
A never-ending bottomless pit.
I can't tell you how to get to that place of seeing light through the darkness. I can only share how Team Guppy has. Thanks to our Navy-son - we have embraced a mental attitude found in the words NDCQ. That we are not dead and we can't quit. In the words of heroic military men and women who in battle against all odds have had no choice but to Never Quit. In phrases like "Strength through Adversity" that is the Forged motto.
In the motto of NDCQ that when life is tough, BE TOUGHER.
And for me personally, from forging a faith in HOPEISM. In God. The one constant in a life of inconsistent. The calm in my crazy. The sane in my insanity. HOPEISM is my faith in God. I have described my HOPEISM in many ways over the years, but recently I have found it described most perfectly in the book, "Through the Eyes of a Lion" by Levi Lusko.
He describes hope (he meant HOPEISM) in this way:
...to have HOPEISM is to believe that something good is going to happen. That help is on the way. That it's not over yet, and no matter how dark it seems, there's going to be light at the end of the tunnel. HOPEISM is a confident expectation. A joyful anticipation. An active, dynamic, energizing enthusiasm. When you have HOPEISM, gale-force winds can blow and tsunami waves can smash into the hull of your life, but you are buoyed by the belief that the best is yet to come, that brighter days are ahead. HOPEISM quietly tells your heart that all is not lost, even as storms rage.
Do I act out that kind of HOPEISM every day? No. Some days my HOPEISM is barely a whisper, and that's ok. Do I sometimes stand at the edge of that cliff and dare myself to jump? Wish someone would come behind me and push me? You bet.
When I wake up to the sound of my son choking and gasping for air or hear him crash into a wall and see that his head has yet again knocked yet another hole in yet another wall - I want to just die. I scream, I cry, and I curse, and I beg for God to take my son so that he does not have to suffer seizures any longer.
There was even a time I told God to go to hell.
And I meant it.
But those things are flesh.
Our flesh is weak and temporary.
I have learned to rely on my will, which thanks to HOPEISM in God, is strong, and eternal.
I have learned to not fear the roar of any lion (hardship, autism, seizures, whatever) but to run toward it.
I have learned in recent "lion" books that we must live a fearless life.
Be lion chasers.
Don't fear being "In a Pit with A Lion on a Snowy Day"- but instead be a Benaiah who came out victorious from being in that pit with that lion on that snowy day!
That's the advice I would give a new mom having to hold her seizing child while they tremble violently, choke, and gasp for air.
That's the advice I would give to a new mom on this journey through hell...
To keep your eyes fixed on HOPEISM.
To know that God is good even when prayers aren't answered.
That life is good even when your situations aren't.
That it's always darkest right before it becomes pitch black.
Ok, so maybe that sentence doesn't belong...
But it proves that laughter will be your best medicine in this journey from hell to HOPEISM.
June 23, 2018
Back to reality...
I've been at my desk off and on for a week trying to find the words to reflect on thirty years of marriage.
And not just your typical kind of marriage, but an autism kind of marriage...
I even went digging through stacks of pictures in hopes of finding some inspiration to commemorate such an occasion. I mean, for a marriage (add in life with autism, seizures, and a side of PANDAS) to last this long in the midst of today's drive-thru-disposable society is worthy of some sort of fairy tale story, right?
A million dollars?
I guess a dose of "Life with Autism, Seizures, and a side of PANDAS" marital truth will have to suffice.
It was hard looking at all those pictures.
It brought back the floodgates of should have been, could have been, would have been if not for... I mean, as parents of young children you expect it to be hard. You expect your marriage to time together to take a back seat to raising kids. You expect the sleepless nights and sacrifices. But then you know that ends and then you can pick up where you left off, so to speak.
Our child is twenty-four years old.
We have yet to be able to have that transition. We've been in the starting blocks with the adrenaline rush just waiting for the gun to sound so we can go full speed until we cross our finish line. It has yet to be fired. I have to laugh at how if it ever does go off I'll be so stiff from being in the starting blocks so long that I'll fall flat on my face and not be able to go anywhere!
(Heck, looking back at our pictures of our early years in "Life with Autism" before all the seizures and PANDAS - I had no clue either! I mean, we were bigger, stronger, and faster than a young Brandon!)
And I pray they never have to have an inkling of a clue of what kind of "enduring" our marriage has had to have...
I guess to even begin to share about what kind of marriage we've had since autism, how we have learned about what loving someone and true commitment to that person really is; I would have to go back to Valentine's Day 2010. It was on that day Todd and I stood in a court before a judge, and when he asked each of us if we would vow to protect our son and his rights for the rest of his adult life, - we said, "I do". Knowing full well that saying "I do" to him, meant giving up yet another piece of us and the "I do" to our marriage.
But we did it...
Because only in thinking about and fully realizing what his vaccine injury/autism means to him, could we understood what our marriage commitment truly means to us. And what unconditional love truly is. You may marry for love, but you stay married because of unconditional love.
(And it's how I do boldly say that any marriage that does not have the magnitude, --the length, depth, width, breadth of the all encompassing consequences of vaccine injury as ours does, --you've not understood what true commitment is, nor has your marriage endured on this lifelong level. Nothing compares to what this community of marriages have to face, and for the length of time they must face it. Nothing.)
Brandon cannot divorce his autism when it hurts, gets too hard, gets old.
Think about that.
Sometimes the weight of trying to be everything to everyone gets so heavy that I just want to run away. But then I think of Brandon and his vaccine injury. His seizures. His PANDAS. How he has no choice but to endure. To fight. To survive.
Our marriage deserves that same mindset.
We see all the pain, frustration, and limitations his autism places on him. We see in him all that he has lost. We know what it's like to want to be free of what those things mean for us as his parents and caregivers; and can hardly imagine how that impact is a thousand-fold for him in being the one who must ultimately bear the weight of his injury and all that comes with it.
Yet he must.
He has yet to be able to think or say to all that affects him, "Ok, I'm done!"
"Autism, I'm packing up my things and am out of here!"
"We had a good run of it autism, but it's over!"
"I've found someone way better than autism!"
"We are never, ever, ever, getting back together again, like, ever..."
(cue Taylor Swift song)
That is the depth of marriage commitment someone like us has to have with autism.
Brandon has no choice but to deal with what hinders him.
Therefore quitting cannot be an option for us for lesser things.
And trust me, anything other than life with autism, is a lesser thing.
Much like there is no magic potion to restore what was lost in an entire generation of vaccine injured children - there is no marriage counseling, marriage seminars, marriage books, or marriage retreats that can come close to advising a couple how to endure a vaccine injured marriage.
There's just not.
For one, there's not even a way for most parents to go to such things. No one has even understood that basic first step yet!
Those of us whose marriages have endured, have had to learn how to do so essentially on their own. We are thankful, grateful, and blessed that for us, our faith has been the rock where each of us has been sand a time or two (or three) over the years.
While many things have happened to cause us to question that faith a time or two (or three), it has never been washed away.
Our faith is a faith that has been forged not by conviction, but by fire.
And in this rock, paper, scissors game of married with autism, fire wins.
While God has been, is, and always will be the mountain; that I have been a pebble, and Todd a rock, is only because of the boulder Brandon is. He has had to hold fast through the storms he faces; and in seeing the incredible amount of strength he has to survive all he must survive, we have found a great strength for our marriage to survive all it must.
For as long as it must.
We've endured the tenderness of a rare moment to actually get to look at each other and share a thought with one another; and we've endured the eternal heart-stopping terrorizing moments of a PANS flare. We've cherished the bittersweet Kodak moments we've managed to capture in seeing Brandon without his autism, and we have tried our best to delete the horrific, sometimes bloody moments of what that autism has done to Brandon.
With the exception of a few, we've been abandoned by family who should have been (and be) our closest allies; but in their place we've found a tribe of warriors, most of whom we have never personally met, who have stood beside us and fought alongside us and who have helped us up each time we have fallen down.
There have been fleeting marriage moments where we could get in thirty seconds or more of a conversation before being interrupted by humming or the demands of autism; and there have also been many more weeks or months where we felt more like nurse and doctor giving shift reports as one clocks in and the other clocks out in caring for our son.
In a marriage that thrives on putting each other first, because of how deep the claws of autism are, not only has "each other" been last, but the "marriage" hardly made its way on the list at times. No marriage seminar advising regular date nights to keep the love kindled is titled, "Date Night, table for three please!"
In reality our marriage has been so tag team based that it's like the child of a divorced couple -- one week Todd does what he wants on the weekend, the next week I do, and then when Brandon is feeling good and we're feeling brave, we all attempt something together!
And there's not a thing we could (or can) do to change that.
Not on our own at least.
We needed (and need) a village to help, but sadly more often than not we've found ourselves on a remote island with way too many other husbands and wives in the exact same situation.
Autism is spelled C.O.N.S.T.A.N.T D.E.M.A.N.D.S. It is not something that can entertain or care for itself for any length of time. It is not something that can go out to play, be put in front of the television, or sent off to a friends house or to Grandma's for the weekend.
Oh, how we've longed for those opportunities - to simply be in our own home by ourselves for just a weekend or two here and there.
Despite the challenges, we have done our very best to live well, laugh often, and love much in this crazy, mad, wonderful marriage journey.
We've had memorable's, forgettable's, regrettable's, and in Todd's words, "non-recoverable's".
There have been moments we've laughed so hard we couldn't catch our breath, and moments we were sucker-punched so severely it knocked the wind right out of us.
We are ever so thankful & grateful to those who have been our tribe; those who have been a blessing in helping to ease a burden, pray us through, provide respite, a vacation, a bucket of water for our journey through hell.
We have cherished the times on top of the mountain, and have loathed the times in the valleys.
And we have been humbled in having to admit that it has been in the those valleys where we have learned the most about life, love, marriage, fairy tales...
Because of autism, we've been apart more than we've been together. But because of that, our precious times together have meant so very much more. We have learned to take nothing for granted.
It has only been through our journey from the hell of autism to the HOPEISM our faith gives us, that we truly understood what a fairy tale marriage is. For us, it will have nothing to do with happily ever after. It just won't. Vaccine injury rewrote such endings for an epidemic number of marriages (the ones that have survived) and unless God chooses to completely heal our son, or calls him home before our time, there will not be peace in our final marital sentence knowing we leave behind our most vulnerable, completely dependent son who we love with all that is within us. Happily ever after will be for those who leave behind children and grandchildren who can live independently and take care of themselves...
I think perhaps though, we've learned something far better...
That a fairy tale is more about slaying dragons than happily ever after.
And I think I can say that as the King and Queen in our fairy tale marriage, we have slayed a hell of a lot of dragons to get to this point.
The most fierce dragon being divorce.
We've won some battles, lost some battles, and our marriage has been beaten and bruised beyond recognition at times by those battles; but we've never quit.
Each dragon bravely fought with all the strength we have.
There has been no fairy godmother, no carriage, no kingdom...
Only a sword:
"Blessed are you, Israel! Who is like you, a people saved by the Lord? He is your shield and helper and your glorious sword. Your enemies will cower before you, and you will tread on their heights.”
We can't know what the next years of marriage might hold... And unless society changes how it supports those with autism, unless the government changes how it financially helps those with autism, and unless families, friends, and the church fully grasp the enormity of autism and step up to help in whatever tangible ways they can -- our marriage with autism will only get harder. Life with autism will continue to steal the very air a marriage needs to breathe.
All we can cling to with all the strength that is in us, is the HOPEISM that God will continue to sustain us, provide for us, and be that shield of protection around us with His Love, Grace, Mercy, Faith, --- and Humor.
Lots and lots and lots of humor...
A trip down our memory lane...
|It was thanks to our Navy-son, Matt, who through the path he chose to pursue, introduced us to the warrior mentality that would get us through the many battles that would be coming our way soon after this calm in the storm.|
|Baby shower! Where was my tribe then to guide me in the wisdom of how to prepare for our first child! Oh, how I wish I had my tribe back then to warn me NOT to allow all the things I allowed!|
|We have certainly had our share of high's on this journey. We cherish these few precious times together of being able to go, do, and be...|
|Laughter. It has been our saving grace. The precious few and far between times we've had to be together, we've, .....needed adult supervision.|
|I think this picture captures the essence of our marriage in "Life with Autism, Seizures, and a side of PANDAS" in how you freeze-frame the good times, and delete from the camera the bad times.|
|Endurance. That's what a marriage takes. But oh, when you cross that finish line, the sense of accomplishment is worth all the tears shed to get there.|
|Marriage Moments... courtesy of Team Guppy 1.0 who were caring for Brandon so we could spend "Christmas in Cali". And yes Todd, I still remember why you have that smirk on your face! Not funny! :-)|
|Marriage Moments, thanks to those who offer to be the hands and feet of Jesus for Brandon so that we can run a hundred miles an hour with our hair on fire, er, full of mud.|
|In a marriage like ours, "Date Night" has often been during "Day Surgery" for our son...|
|Marriage Moments thanks to Camp Blessing, TX|
|Marriage Moments made possible only because of those who offer to care for Brandon.|
|Oh how we cherish those moments of solitude, peace, tranquility when Brandon sleeps...|
|The key to marriage is to laugh until you can't breathe. This was yet another "Date Night" during "Day Surgery". And another reminder of why we need adult supervision when out in public. Who knew taking a selfie could be so hilarious!|
|Unleashing our inner hippie while Brandon is at Camp Blessing, TX|
|Warriors. Till death do us part! HOOYAH!|
|We still do...|
June 17, 2018
The pictures represent what our hopes and dreams of children would be, our little tank of Guppy's and the crazy, mad, wonderful world of adventure that awaited us as we began our family.
A lifetime of mischief...mayhem...milestones...
But as life does sometimes - it brings you lessons you never wanted to learn.
It is the wise person, the wise father in this case, who has the choice to find the purpose in them where none can be found, or be defeated by them.
I know my own thoughts as a mother; but as I have watched Todd all these years as a father - seen his prayers - watched his tears - was amazed at his strength - I wondered if even in all that I could fathom what it truly felt like to be a father of two such opposite boys...
One who fearlessly ran toward the world at high speed...
One who lives in such need of protection from that very world...
How thankful I have been for Todd's strong arms of protection as time and time again he attempted to shield his son from the world that confused him, tried to hurt him, was painful for him, or that he simply did not want to be a part of as much as we have tried to include him in.
Where Brandon preferred to be the moon with its black & white serenity and simplicity....
That bright, shining star that brought such vivid color and complexity to our home.
It's hard to put into words what it must feel like for a Dad to be able to go on a vacation of a lifetime with one son; knowing the other son is home, unable to go to the places he longs to take him.
Todd spent many hundreds of dollars to sit on a wall for a week and watch as one son went through hell. Knowing he couldn't help him through it, he still wanted to be as close as he could to will him through it.
Countless more dollars spent than prayers answered...
Yet in that he has learned what typical fathers never will: the true humility and humbleness of living well, laughing often, and loving much. Living simply and being thankful & grateful for God's provision that provides for his family. Of being able to understand what being the hands and feet of Jesus means to another person.
Through it all Todd has been the father the father is no doubt so very proud of.
Todd has seen the highest of highs and the lowest of lows with his sons.
The many good times with Matthew ---
Those times where he gets a glimpse of his son and not his autism.
Such bittersweet moments of anguish, care taking, and trying to teach basic life skills to his other son who was denied the ability to be on his own with his own family - and who will instead require a lifetime of care in our home.
I long to be able to put into words all that this day means to Todd.
How he has flown to such heights with one son while being grounded by the other. Such extremes of fatherhood...
Yet as I've watched him all those years I've seen how it has shaped him and hardened him. Not in the world's harshness, but as a believer who builds his faith, his convictions, his prayers, on a rock that cannot be moved.
He has been shaken, greatly.
But he has never fallen.
He will never quit.
And I think that is the greatest legacy he will leave the son who can understand it, and especially the son who never will.
While it may have been this son who made Todd a Father...
It was this son who has shown Todd who God the Father is...
His Grace, Mercy, Unconditional Love, Faithfulness -
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