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...

I am.....

I am…

I am the little engine that did.  When on my journey in life, my tracks led me to a mountain -  a diagnosis of (child’s disability) -  I looked at it with defeat - thinking there was no way I could climb over it.  I then pondered the obstacle before me, and I then said to myself over and over, "I think I can, I think I can...," then I slowly started climbing the mountain saying to myself over and over, "I know I can, I know I can,...."  and then I made it over that ominous diagnosis and continued my journey.
        I am unstoppable. 

I am more devoted than Noah’s wife.  I sometimes feel overwhelmed in my  “houseboat” -- 365 days and 365 nights a year, constantly working with and teaching my child.   But when the storms of isolation and monotony become  most unbearable, I do not jump ship. Instead I wait for the rainbow that is promised to come. 
                  I am HOPEISM.

I am Xena.  Real life warrior goddess of (child’s disability).   With my steel plated armor I can battle anyone who gets in the way of progress for my child.    I can overcome the stares and ignorance of those without a disability in their lives - and educate them as to why my child is the way he is, and why he does the things he does.  With my sword of persistence, I can battle the schools to have them properly educate my child, and with my shield of determination I can block laws and legislation that would discriminate against my child.   Yes, I am Xena - and I am prepared for any  battle that might come my way...
      I am the invincible.

I am beautiful.  I have hairy legs because I get no time alone for me, I sport bags under my eyes from staying up all night with my child, and most days I feel I am simply running on fumes. The only exercise I get is the sprint from my house to my car - to take my child to therapy.  Dressed up to me is, well - just that I had a moment to get dressed!     They say that beauty is in the eye of the beholder - and so even on the days when I don't feel very beautiful - I will know that I am…….. because God is my beholder.
      I am fearfully and wonderfully made.

I am the Bionic Woman.  With my bionic vision - I can see through the disability my child has,  and see the beauty in his soul,  the intelligence in his eyes --- when others can't.    I have bionic hearing -  I can look at my child when he smiles at me,  and hear his voice say, “I Love You Mommy,” --- even though he can’t talk.   Yes, I am thankful to be Bionic.
      I am empowered.

I am Mary.  A not so well known mother of my son whose life would touch the souls of those around him, in a way that will forever change them.  And it started with me.  By teaching me things I would never have known, by bringing me friendships I never would have had, and by opening my eyes as to what really matters in life.  Things like  the Joy of just living in the moment, the Peace of knowing that God is in control,  never losing Hope,  and knowing an unconditional Love that that words cannot express.  Yes, I too have been chosen for a task I would never on my own have chosen, just like Mary.
     I am humbled.

I am Superwoman.  I am able to leap over tall loads of laundry in a single bound, and run faster than a speeding bullet, to rescue my child from danger.  I have eyes eyes in the back of my head and can hear a seizure gasp from my son in the other room even when I'm sound asleep in the middle of the night. Oh yes,  without a doubt, I am Superwoman.
       I am thankful.

I am Moses.  I  am imperfect.  I may at times question whether I am the right "man" for the job ---but God will give me the Faith I need to lead my child to be the healthiest and most independent he can be.     And like Moses, God will give me the  small Miracles here and there,  needed to accomplish my mission.
            I am a leader.

I am Stretch Armstrong – a mom that can be stretched beyond belief – and still somehow return to  normal.    I can stretch limited funds to cover every treatment and therapy that insurance won't.  I can stretch my patience as I bounce from doctor to doctor in a quest to treat my child.  I can stretch what time I have, and share it with my husband, my children, my church, and still have some leftover to help my friends.   Yes, my name is Stretch.  And I have the stretch-marks to prove it!
                               I am resilient.
        

 I am Rosa Parks.  I refuse to move or waver in what I believe is right for my child --simply because my view is  the minority, not the majority.   I refuse to believe "What can one mother do?"  But instead, I will write, call, and rally to the government if I have to, and  do  whatever it takes to prevent discrimination against my child and ensure that he gets the services he needs.
        I am brave.

I am Hercules.  The Greek god known for strength and courage.   The heavy loads I must carry would make others crumble to the ground.  The weight of Sorrow, Fear at uncertainty of the future, Injustice at having no answers, and the Tears of despair,  would alone possibly be too much, --- even for Hercules.  But then the Joy, Laughter, Smiles, and Pride,  - at my child's accomplishments, - balance the load to make it easy to bear. 
               I am indomitable.

I am touched by an Angel.  An Angel who  lives in a world of his own.   And it’s true.  He lives in a world of innocence and purity.  A world without hatred or deceit.  A world where everyone is beautiful and where no-one is ugly.  A world where there is always enough time when you simply live in this moment.  A world where he goes to bed with no worries of tomorrow and wakes up with no regrets of the past.  Yes, I most certainly am touched by an Angel, and in some ways,  his world is better….
            I am blessed.

I am a true "Survivor" - the mom of a child, who has faced, is facing, and will face, --some of the most difficult challenges life has to offer for longer than any human was designed to have to face them.   I am ready for the marathon to outwit, outlast, and outplay my opponent of disability.  The only things I will be given are the supernatural mental endurance and fortitude to last until the end; -- along with  a sense of humor to cope with all the twists, turns, and surprises along the way.   Oh yes, I am a  TRUE "Survivor" - and I only wish it were as easy as being on a television show and collecting one million dollars at the end. 
             I am the champion.

I am forged from the adversities I have been forced to face.  I have gained a strength from those fires that few could fathom. Where the most elite in the Military have a motto that says "The Only Easy Day Was Yesterday" - as the mom of my son who is vaccine injured I have found my motto to be, "There Are No Easy Days" - only battles to fight with little to no reinforcements for the weary.  And like those elite warriors, I will only be defeated in two ways:  If I give up, or if I die.  I am in it to win it.  I will run to the ROAR.  I will Never Quit.
          I am NDCQ.
    (not dead can't quit)

I am the mom of a child with a disability, all the above,  and so much more.   Some days I will want to be none of the above – and just be a typical mom with a typical child, doing typical things.  On those days I will know it’s o.k. to be angry, and to cry, and to lean on my family, friends, and church, for support.  Because after all, ---the most important thing I am, …..  is human. 

         I am unbreakable.

****

And on this day, and any other day I need to, I will read this as a reminder,  of just who it is,   I am………

I am Michelle and I live in vaccine-injury land because of the Jabberwocky called Pharma that feeds off of greed, fear, and dishonesty...

But you know what?

I believe in many more than six impossible things...

One of them being that Jabberwocky's can be slayed.

c. May 2000 By Michelle M. Guppy  –  inspired by Warrior  Mothers I have met on my journey - and dedicated to Warrior Mothers everywhere…….

Please contact MichelleMGuppy@yahoo.com for permission to forward or distribute or publish.

The Invisible Heroes...

I wrote the below "Letter to Society" several years ago...

I am sharing it here, for Mother's Day, in honor of all the invisible heroes who devote their lives to caring for their children who have lifelong disabilities, and especially for all who are not their mothers but who care for them as if they were.

I have been blessed to have had several invisible heroes in the course of Brandon's life thus far -- those who have gone above and to infinity and beyond for him. 

Who have loved him as their own.

But today, for this Mother's Day, I dedicate this to Brandon's current "Mom away from Mom" -- who cares for him at his day program.

There is nothing more priceless in all this world for warrior mothers than the peace of mind that comes from knowing that the person who you trust to care for your child - actually does care for your child.

And I especially want Trisha's children to read this "Letter to Society" and to know that of all the professions in this world, there is none.  I repeat, none --- that is more honorable, more valuable, than caring for the life of another person.  I see them at the center with their Mom and I wonder if they truly know what a remarkable person she is.  I see them watching her have to care for the most basic of needs in my son - and I wonder what they are thinking...if they truly understand the word "humble servant" and what it means to be the "hands and feet" of Jesus.  I wonder if they can even fathom how in Jesus' eyes, their mother is greater than the greatest and most accomplished and wealthiest person in this world. 

Society, school, everyone, everywhere tells you otherwise.

Don't believe it.

I wonder if they can understand that...  I pray that one day they do fully understand that...  It is my HOPEISM that they are so very proud of their mother in choosing to do what most others would shun or think is beneath them...

Because in heaven - it will be those who care for "the least of these" who will get the biggest "well done faithful servant" welcome.

Thank you Trisha --

Thank you to all the Trisha's of the world.

Thankful & Grateful,

Team Guppy

Letter to society

                                                              

I thought it was thunder rumbling in those late hours of the night… 

The calm, peaceful thunder that keeps you slightly awake, but yet relaxed enough to still rest, and sleep. 

But when the wee hours of the morning came, that thunder became not so peaceful.  Clanging and banging, but not in the rhythmic smooth way that thunder is.   That’s when I knew it wasn’t thunder.  It must be my son.  He’s up again.   I tried to ignore the sounds, thinking they would stop.  I was so tired….   Weeks in the summer when school is out can seem like  months when you cannot find attendant care.   But,  the mommy alarm in me wouldn’t let me ignore it for too long…  What if he’s wet… dirty….  hurt.  Then, as I lay there longer still, I became angry.  Why me.  Why again.   Why not wait and see if my husband gets up to check….

That made me angrier.  Knowing that really, even though my husband does his share,  I should get up and do all that needs to be done, because my husband has an important job to go to early in the morning.  He has responsibilities, meetings.  A paycheck to earn.  He must be fresh to do a good job, so he can keep his job.  Me, I don’t have a job, at least not one I get paid to do or can get fired from.  I stay home and care for my son and my family.  I don’t have to clock in.  I don't even have to get  dressed. 

And apparently, I don’t have to sleep either.

So it was with that anger, (and perhaps a bit of self-pity), that I trudged upstairs to my son’s bedroom to see why he was awake.  I didn’t need to turn on lights, I could follow the banging and clanging of toys being thrown, a bed being jumped on.  And by the aroma that met me when I opened the door, I didn’t need lights to tell me the reason why my son was up clanging and banging.

So in the dark I changed my son so I wouldn't disturb the rest of the family.  I perhaps grumbled too loud as I tried to maneuver a diaper on and off in the dark.  I perhaps grabbed a stray arm that was in the way of me cleaning him, a bit firmer than necessary.   And when diapers were changed, clothes changed, and sheets were changed, and he went back to banging and clanging, I know that perhaps I said to him way too angrily, “Go to bed!”

I’m not sure when he finally did go back to bed, but the next morning at 9:30am when I was to pick up my other son from swim practice, he was still sound asleep.  He looked so peaceful, so sweet.  Nothing like what I heard just a few hours earlier.  The guilt was quite a mouthful as I recalled what I was thinking about him in having to be up most of the night because of him.  I hated to wake him up, but knew I couldn’t leave him to sleep while I went.  So I woke him.  Once downstairs he was confused as to why he was turning to go outside to the car, instead of in my bedroom to the tub, his normal routine when he wakes up.

As I drove to the pool, I was now mad at myself, and not him.  Mad that I was mad about having to get up at night.  Mad about being tired all morning; and even madder that I had no one I could call to stay with him when I have to leave – or just to give me a break now and then.  I was mad that my back still hurt after two weeks of pain.   I guess a decade of bending and changing and chasing and dressing had started to take its toll.  Along with nearing forty, adding ten extra pounds; not to mention the lack of exercise because of taking no time for myself, even when I have it to take.  

Too many other more important things to do…

Then I happened to look in the mirror …

Not the rear view mirror, but the special mirror I have attached to my rear view mirror.  The one that allows me to watch my son like a hawk while I'm driving.  So I can see and hopefully dodge a drink he has launched my way.  So I can see when he’s escaped from his seat belt and can pull over before he gets to the front seat and grabs the wheel.

What I saw in that mirror humbled me. 

I saw a little boy with blonde hair, sleepy eyes, and disheveled hair.   I saw my child in pajama bottoms that were inside out and backwards because I had hastily dressed him in the dark in the middle of the night.  I saw a man, with a man’s body, in a sleeveless t-shirt.  A man I admired and who was worthy and deserving of my respect.  I saw a child who tries so hard to navigate a world he doesn't understand, and that doesn't understand him.

I saw my child who could not talk and who has autism, sitting there as pure and vulnerable and as sweet and as innocent as a human being could possibly be.

And I saw the real reason for my anger.

It wasn’t the little boy in the back of the van sweetly grinning and swaying his head to the beat as a song he likes came on.  It wasn’t the little boy who couldn’t sleep last night because he was wet.

It was society...

It was how society had slowly eroded my sense of self worth into thinking that it was a burden to care for or clean up after someone else.  That the job of doing that, wasn’t worthy of respect or an honest wage.  It was those subtle messages I am exposed to each and every day, that say that to be worthy, you have to be beautiful, perfect, smart, rich.   I am none of those things in the world’s eyes.  It was those messages I am exposed to everyday that say that I must be self-sufficient and have a career.  A title.  A degree.  The more initials after my name, the more important I become and the more pay I earn.   I have neither, and get paid nothing.  

So what does all that make me, or the job I do at home?

It was those messages that if you do have some sort of specialized training or position, that you have to do something the world deems worthy with it.   I did go through a policy-making class that trains you how to be a professional advocate.  I am a part of an important state agency council.  But am burdened that because I have no help in caring for my son, that the training and position is going to waste because I am not able to go out in the world and put that training to use.  All I can do is stay home and feed, change, and clean up after.  No traveling to important places to work on important policies to help pass important laws.  No, the most important thing I do each day is to remember to lock all the doors in my house so my child doesn’t run away or flood the bathrooms.

And it was that knowledge that had built up, that made me feel the angry way I did in the middle of the night as I changed yet another diaper, yet another set of pajamas, and yet another set of sheets; in caring for my son.  It was that knowledge that had built up that made me wonder if that is all I would ever get to do.  And if so, was it worth it?

I was sad at how society places value and worth on so many other things, except those things or people that matter most. 

I was sad at how the jobs where you care for others, are the most underpaid, understaffed, and ill-supervised. 

I was sad at how society teaches that no, it’s not worth it.

I was sad at the realization that I too, had slowly become a part of that society.

I was so consumed with finding someone to help me care for my son so I could go out in the real world and get a “real job,” a “real paycheck,” and do “really worthy things,” that I saw caring for my own son as a job that didn’t matter. And by seeing what I did as just a job that didn't matter – the person I was working for, my son, became an object. One that didn’t matter.  One that had no feelings.  By falling into that trap, I understood why there was abuse in state schools, nursing homes, and institutions.  Some there probably felt as I felt.  That their job didn’t matter.  They were working for clients or consumers, and not people.  So what if they talked to them rudely.  It was just a client, not a person. So what if they moved an arm out of the way bit rough.  It just belonged to a consumer, not a person.  So what if they made them lay there wet or soiled a little longer….  After all, it was the middle of the night, who would know?  

Who would care?

I do.

And my Legislator should.  

My state should.

The federal government should.

And above all, society must.

I am not angry anymore, I am humbled. 

At how God used my son, the least of these in the worlds eyes, to teach me a most valuable lesson that all the beautiful, smart, rich, degreed, important, initialed people in this world, could not ever have taught me.

He taught me that all I have to do to define worth, is to look in the special rear-view mirror of my car – and see what is worthy in God’s eyes.  To see what’s beautiful, rich,  and intelligent in God’s eyes.   My son’s worth is that he is simply a child of God. Not enabled, not disabled.  Just a child.  An individual.   My worth is further defined by knowing that in loving and respecting that individual that God thought important enough to create, I am doing what is most important in God’s eyes as well…

Caring for him…

~

And that is something I will never let society take away from me again.

Ever.

And if you are someone who cares for an individual in the way I must, do not ever let anyone take that away from you either.

~

Yes my son, if caring for you is all I ever get to do,  it is worth it; and I'm honored to do it.

Please forgive me for the times I ever felt otherwise.

And to all those caring for those like my son, you are the invisible heroes.

Don't ever let anyone make you feel otherwise.

Written by Michelle M. Guppy                                                         

For all the Brandon's of the world and those who care for them .......