A Priceless Treasure Indeed...

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.

Hello?

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.

Except one.

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!

(just kidding...)

(no really....)

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.........

(smile)

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?

No.

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.

Autism Rescue Angels: It takes a village

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.

Plural.

Very plural.

Endless.

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...

Impending retirement.

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.

Team Guppy

Choosing Happy. Living Joyfully.  Following Christ.  Wearing Camo.                                    Michelle M. Guppy

Believing there will be good when all around you is bad...

I share our journey from hell to HOPEISM with much transparency as both a warning to not go down the vaccine rabbit-hole that we did and hopefully as a bit of HOPEISM to those who didn't know any better and who are down there with me...

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.

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.

Once Upon a Marriage...

Once Upon a Marriage there lived a strong, handsome  Spartan-in-shining-armor King whose smile lit up the Kingdom; along with his beautiful, supermodel-tough-mudder-warrior of a Queen.  Their Royal Castle was filled with money, things, and the laughter and antics of their two Royal Prince's: Matthew and Brandon, and the muddy paw-prints of a Royally Neurotic Labrador Retriever named Chevy....

Ok, fine.

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. 

Thirty.years.of.marriage.

And not just your typical kind of marriage, but an autism kind of marriage...

Big difference.

Huge.

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 medal?

A million dollars?

No?

Darn.

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!

More than anything, looking at those pictures made me laugh at how naive we were.  Looking at pictures of how we thought we were in love, and then knowing what love actually is, are two very different things.  I see the posts of typical young (or older) people living typical lives with the typical challenges - either with typical children or no children yet - and how they gleefully share how proud they are in how their marriage has "endured" those typical things, and I have to laugh.  Hard.  They have no clue.  None at all!

(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...

Has...

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...

Why?

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.

I have.

Many times.

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)

He can't.

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:

 HOPEISM.

Deuteronomy 33:29

"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...

Fairy Tales are more than true; not because they tell us that dragons exist, but because they tell us that dragons can be beaten. 

Neil Gaiman, Coraline

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Our marriage in "Life with Autism, Seizures, and a side of PANDAS" will no doubt continue to be paved with many more dragons to come; but together we plan to slay each and every one of them!

#theylivedNDCQeverafter
#DragonSlayers
#HOOYAH

________________________________________________


A trip down our memory lane...

Oh how little we knew about love, life, marriage, anything!

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...

HOPEISM...and eternal Praise to our Lord and Savior Jesus Christ.  That is the rock that holds our marriage together.  This vacation of a lifetime was made possible by Happy Someday.  We were so very Thankful, Grateful, and extremely Blessed by them giving us this most precious gift.

Hand in hand, side by side, my ride or die...

Never Quit.....

Finish Strong.

Dad: The Man, The Myth, The Legend

It's hard to put into words the above pictures.  Taken at a time of such innocence, before the ravages of "Life with Autism, Seizures, and a side of PANDAS" truly took over.

The pictures represent what our hopes and dreams of children would be, our little tank of Guppy's and the crazy, mad, wonderful world of adventure that awaited us as we began our family. 

A lifetime of mischief...mayhem...milestones...

But as life does sometimes - it brings you lessons you never wanted to learn.

It is the wise person, the wise father in this case, who has the choice to find the purpose in them where none can be found, or be defeated by them.

I know my own thoughts as a mother; but as I have watched Todd all these years as a father - seen his prayers - watched his tears - was amazed at his strength - I wondered if even in all that I could fathom what it truly felt like to be a father of two such opposite boys...

One who fearlessly ran toward the world at high speed...

One who lives in such need of protection from that very world...

How thankful I have been for Todd's strong arms of protection as time and time again he attempted to shield his son from the world that confused him, tried to hurt him, was painful for him, or that he simply did not want to be a part of as much as we have tried to include him in.

Where Brandon preferred to be the moon with its black & white serenity and simplicity....

... Matthew was our sun. 

That bright, shining star that brought such vivid color and complexity to our home.

Todd was that father who ran a hundred miles an hour with his hair on fire teaching Matthew all there is to know about being a boy; yet who sat still for eternities on end simply praying Brandon through yet another trip to the emergency room.

Todd has been the warrior dressed in Camo in support of one son who wanted to join the Navy and conquer the seas...

While at the same time sterilized in scrubs as he waited time and time again to take his other son in the procedure room for a simple dental exam.

It's hard to put into words what it must feel like for a Dad to be able to go on a vacation of a lifetime with one son; knowing the other son is home, unable to go to the places he longs to take him.

A Father bears the weight of the world for their child - and some fathers like Todd must bear the greater weight of that very child on their shoulders.

One son can never even know that he has a father, and the other son who does know he has a father, will never be able to fathom the length, depth, breadth, and width of that love...

Todd spent many hundreds of dollars to sit on a wall for a week and watch as one son went through hell. Knowing he couldn't help him through it, he still wanted to be as close as he could to will him through it.

While one son only had to conquer one week of hell, Todd has taken countless trips through hell in sitting beside his son though yet another meltdown, yet another doctor visit, yet another sleepless night, yet another attempt to help him be able to simply navigate the world around him.

Countless more dollars spent than prayers answered... 

Yet in that he has learned what typical fathers never will:  the true humility and humbleness of living well, laughing often, and loving much.  Living simply and being thankful & grateful for God's provision that provides for his family.  Of being able to understand what being the hands and feet of Jesus means to another person.  

Despite the hardships Todd has been the kind of father who paves the path in finding peace through prayer and a faith forged in the fires we've had to face.

Through it all Todd has been the father the father is no doubt so very proud of.

Todd has seen the highest of highs and the lowest of lows with his sons.

The many good times with Matthew ---

The rare times with Brandon that are even more precious because they are so very few and far between... 
Those times where he gets a glimpse of his son and not his autism.

So many adventures where Todd has been able to teach Matthew survival skills in the outdoors to shape him into the man he is today and the father he one day in the future be.

Such bittersweet moments of anguish, care taking, and trying to teach basic life skills to his other son who was denied the ability to be on his own with his own family - and who will instead require a lifetime of care in our home.

I long to be able to put into words all that this day means to Todd.
How he has flown to such heights with one son while being grounded by the other.  Such extremes of fatherhood...
Yet as I've watched him all those years I've seen how it has shaped him and hardened him.  Not in the world's harshness, but as a believer who builds his faith, his convictions, his prayers, on a rock that cannot be moved.

He has been shaken, greatly.

But he has never fallen.

He will never quit.

And I think that is the greatest legacy he will leave the son who can understand it, and especially the son who never will.

Where as a father Todd has such pride in one son and his career of  honor, courage, and commitment ---

 He has even more pride in the other son who taught him what those words truly mean.

 ~ ~ ~ 

While it may have been this son who made Todd a Father...

It was this son who has shown Todd who God the Father is...

His Grace, Mercy, Unconditional Love, Faithfulness - 

...and sense of humor.

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ 

It's hard to quantify what "Life with Autism, Seizures, and a side of PANDAS" has stolen from a family...

One can only put it in the perspective that on today, Father's Day, it has stolen the very essence of a boy to even understand that he has a dad. And with that has stolen all the typical milestones and memories there are for a father/son to have...  

But in their place, bittersweet memories and moments that only a father of a son like Brandon can understand.  Those times when you truly know what it is to love a son unconditionally. 

Perhaps more than what was stolen from Todd as Brandon's father, the true theft has been what was stolen from Brandon...

The chance to one day be a Dad.

~ ~ ~

Two fins way up to you Todd - for the being the best bad-ass Bone Frog to our two Guppy's whose worlds are as opposite as can be...