The Woman who Swings

Now and then people will ask me for an update on "The Woman who Swings" ---

A long while back I started sharing on my Facebook page about "The Woman Who Swings."  My house backs up to a park. Behind my fence is a row of trees, and then off to the side is the park swing set.  I don't remember when her story first started, but for me, my story about her began a few years ago when our "Log Cabin" was built.  We had no shade in our back yard, and no porch, so we hardly spent any time outside.  When we had finally saved enough money, we had a covered porch built so that Brandon could be outside during the day and have some shade when he got overheated, and at night we could have a place to sit and listen to the rain or just be outside.  We called it our "Log Cabin" so that when we would get a few moments of escape, it was like we were actually going somewhere, even if we were really just stuck at home.  Our "Life with Autism" isolates us so very much -- it has been such great joy to escape to our Log Cabin to sit by the fire, have a BBQ with friends, or just be able to be outside during a storm and listen to the rain.  My husband built a couch out there for Brandon to lay on when he was having seizures or just tired, so that he could be outside too and not just stuck in the house.

At night, for my own little escape after everyone would go to bed, and especially for those nights when autism doesn't sleep and instead stomps and hums, I would go to the "Log Cabin" and just sit and read by candlelight or lay on the couch during the holidays and watch the lights on the Christmas Tree I have out there.  Sometimes on a clear night or during a full moon, I would lay on the trampoline and look at the stars while talking to God. The sound of the breeze blowing through the row of trees by the fence is so mesmerizing.  The shadows of branches dancing with the breeze incredibly soothing. Those times outside were always such peaceful times during such turmoil.  My son who has autism has been in such a long downward spiral with regard to seizure frequency and health in general.  It's been a time of disappointment and discouragement.  My time outside late at night true therapy...

I remember so very many times out there being somewhat angry with God.  Ok, very angry.  I had so many questions about why....why the constant downward spiral......what to do for my son.........where are you God...........   I remember crying so often out there because I felt God was so distant.  I have always joked that I need a text from God to spell things out to me.  I am not very good at discerning what his plan or purpose is.  If he would just spell it out I could accept it, whatever it was.  Is.  But to just "do" something. Give me a sign.  "Say" something to me.  I would beg God to not be as silent to me as my son was.   It was hard enough trying to read his mind, I was tired of trying to read "His" mind as well.

I'm not sure how long the woman who swings has been swinging out there, but it wasn't until our Log Cabin was built and I started spending evenings outside that I heard the first squeaking of the swing.  Every night, if we were outside, we would hear the familiar squeak of the swing.  We joked about oiling it, and eventually my husband did just that.  Every couple of weeks he would go to the park and oil the swing.  Her swing.  She became known only as "The Woman who Swings."   A silhouette sitting on the same swing, at nearly the same time each night unless it rained.  She parked her black car in the same parking spot.  We know this because we would often peek over the fence just to confirm.  Yep.  It's her.  Same woman, same time, same swing, same car, parked in the same spot.  She even swings the exact same cadence the entire time she swings.  On a really quiet night you can hear her faintly singing.  We've talked about her to family, then when they come visit, we go out there at night so they can see for themselves.  And she has indeed been confirmed by others!  You ask our neighbor about "The Woman who Swings" and he knows exactly what and who you are talking about.

The only thing we don't know, is who she is or why she swings late at night.  I love that mystery about her.  I have my own story about her....  I think she's a mom of young children who cares for them all day.  At night after husband comes home, dinner made, homework done, and kids in bed, she escapes for her own precious moments of childhood freedom.  I know she's not an autism mom because of the fact that she can get in her car and escape!

When I have shared about her, people have suggested I go and see who she is.  Tell her where I am when she's out there, and how we call her "The Woman who Swings" -- and most importantly, ask her why she swings.....   One night, I even made it halfway to the park, in my nightgown and robe, to do just that.  See who she was.   But I stopped, and turned back.  I don't want to know.  I want to know everything there is to know about Brandon, his autism, his seizures.... If it were God over there on the swing I would be there in a heartbeat asking him an infinite amount of questions....  But the woman who swings, --no.  I want that to remain mysterious.  She is one mystery I don't want to solve.  I love the mystique of her.  She is like what autism took from my son -- imaginary, pretend, carefree, make believe, childhood....  All those things and more.

To me, she has been my Angel.

One particularly rough night when I was desperate to hear from God, I heard the familiar squeaking. It was time to oil the swing but no one had.  So while I was laying on the trampoline trying to hear from God, all I could hear was her swing.  I think it was then that I felt she was more than just "The Woman who Swings" -- she was God's answer to my desperate need to hear from him.  I know God is there, I have HOPEISM in knowing that he is always there, but I needed to hear from God.  The squeaking of that swing was that answer.  Every time I was outside needing God most, she was over the fence swinging.   Sometimes when I couldn't hear the swing, I would look over the fence to see if she was there.  And she was.  Nearly every time I was out there, for as long as I was out there, so was she.  It was so uncanny that at times I even wondered if indeed I had made her up, so I would get my camera and take a picture of her in the dead of night.  If I was out there at 8pm, so was she.  If I was out there at 10pm, so was she.  One night I was out there from 11pm until 2am.  That entire time, she was there swinging.  Same woman, same swing, same car, parked in same spot.  Swinging with the same cadence the entire time.  Never slowing down, never speeding up.  How in the world was it that every time I was out there needing to see or hear from God -- she was over there swinging?  When I couldn't hear the squeaking of the swing, I would look over the fence and see her shadowy silhouette.

She'll never know what her presence there has done for my HOPEISM.  No, I still don't have the answers to all the questions I would ask God late at night.  I still don't feel I have heard from him in terms of if I'm on the right track, if I'm doing what he wants, what I need to do for my Brandon, if it all will work out....   But I don't feel so distant from him anymore.  The Woman who Swings is I guess like my own "Footprints in the Sand" real life poem.  Whether I'm out there to reflect on thankfulness or blessings of a good day, or trying to wash away a bad one and need to see or hear from God -- she is there.   My own personal Angel.  Whenever I'm laying on the trampoline, sitting at the table reading, or laying cuddled on the couch --- and hear that familiar squeaking or peek over to see the familiar shadowy silhouette, I smile.  I smile because I'm reminded that God is, and always has been, there listening.

And always will be.

Whether I see or hear him --or not.

No matter how long it's been that I've been outside for whatever reason, often before I go to bed, I will look out the upstairs window that has a view of the swings.  And I smile.  There she is....

The Woman who Swings.

The Angel who listens as I talk to God.

The fabric of life...

  I have a whole notebook of letters I wrote to Matt when he was a baby.  I would be feeding him in the middle of the night, and with the other hand would jot down messages to him about what I was thinking in those moments.  My hopes for him, dreams for him, and simply expressing my deep Mother's love for him.  My little baby boy...

Now that he's an adult, starting when he was in Boot Camp, I've been writing letters to him...  Mostly what happened in the interim of those years was "Life with Autism" which stole any spare moments to keep up such a journal....  But once the crazy slowed down to a manageable chaotic pace, I resolved to pick up where I left off.  Still sharing the same things...but with more life meaning...not so much sharing with him my hopes and dreams for him, but rather sharing the faith I have in God's will for him, God's plan and purpose to prosper him, and simply how proud this Mother is of him.  Of the man he has become.  Though always still my little boy...

One of the things I desire to share with him through those letters, is how I pray he never totally abandons the boy in him that makes him who he is.  That fun-loving spirit.  That laughter.  That brightest of colors he has filled our home with. 

Like us, he has experienced some hardships...stress like few others his age because of having a younger brother who has autism and seizures.  I remember a few times he left for school in the morning as an ambulance was pulling up for his brother.  I remember a few other times when he was the one calling the ambulance for his brother.  Like us, he has experienced a season of great challenge.  Things out of his control, beyond our human understanding, and not fair at all.  He's experienced like we have, doing the best you can possibly do, and it not being good enough.  Like us, he's been through hell.

But through it all he has kept that smile.  That sense of humor that has helped Team Guppy survive the unsurvivable.  Laugh at the unlaughable.  Shake our head at the reality of the unthinkable.  Of all the things I love about this son, perhaps that is the greatest thing.  His indomitable resilience.  It's a priceless gift that few have either from total irrevocable insanity or a supernatural sanity.  I'm not sure which, though at times I think equal parts of both.

 

 

 

And so my son, I pray that as you grow older as an adult, you keep that ageless quality of laughter and at times downright silliness.  I pray you always do your best and be as serious and the situation calls for, but also, as in the movie Pretty Woman; I pray you are never to busy or too serious to take your shoes and socks off and enjoy the simple pleasures of walking through the grass barefoot.  I pray you are never too grown up to dress up at Halloween and that you don your scuba mask and scare your mother to death by rolling a bottle of firecrackers in her office.  I pray you always grab life by the tail like you did on the horse in that carousel and enjoy the ride while hanging on for dear life.  I pray that as you did in the Bamboo Forest in multiple attempts to climb the Bamboo stalks, you never quit in your pursuit of your dreams, no matter how many times you fall and must start over.  Because as you found out on the last try when you finally conquered them, the view of achievement is breathtaking and worth every repeated effort. 

And though I shake my head laughing in disbelief that you actually did this, I pray that you always have the courage as in the video clip below, to go against the flow in snow skiing in your Camo-speedo that your mother bought you.   And when people gawk or stare, you just smile that smile of yours and wave as you pass them by.

Because truly, if you retain that fiber of your being in the fabric of what makes you who you are in this life, no matter how ragged and worn it gets by life, you will truly pass them by...... 

You will have achieved what few others do in this life....

Living.

click here to view video

On being Forged into a warrior mom...

Brandon wearing a "Forged" t-shirt.

Mother's Day to me has typically been as dreaded as April, Autism Awareness Month. I don't begrudge those typical moms who can go out to eat at a fancy restaurant with their spouse and their typical children who will actually sit and can eat the food served -- I don't begrudge them their handmade gifts or their store bought cards.  (I do begrudge them their day of getting to do nothing though.) I just can't relate to the commercialism of Mother's Day any more than I can relate to the celebration of Autism Awareness Month.

My son doesn't even fully understand who I am, let alone what that day means in how he should cater to me, so how in the world could I ever feel all squishy inside by store bought or assisted hand-made anything "from" him?  With that said, I have so appreciated the efforts of Brandon's therapists over the years who have made sure that on Mother's Day and Father's Day, we get something from Brandon.  It is a very sweet gesture, one that I do cherish...

But, for me to survive how crushing Mother's Day actually is for me, to have never, ever heard a word from him, let alone an "I love you, Mom!" -- much like April and Autism Awareness month; May, and Mother's Day must mean something more than words or gifts.

And it does. 

The shirt he's wearing is from Forged.  I first learned of that brand of clothing from my Navy-son.  He absolutely loves their t-shirts and shorts.  So of course I keep him stocked with their latest and greatest and tried and true regulars.  One day I decided to read about what this "Forged" means.  And I was duly humbled.  I fell in love with what they stand for.  Who they stand for.  

From their website:
Click here for Forged website

What is Forged?

As the hardest steel is Forged® in the hottest fires we too are Forged® by our own struggles and triumphs.

FORGED® is the relentless fighting spirit of those who conquer adversity through life's everyday battles. FORGED® is the military Man and Woman, the Firefighter, the Law Enforcement, and the Volunteer who sacrifices everything that they have to safeguard the nation that they Love. FORGED® is the Entrepreneur, the Inventor, and the Political leader who risks it all for an idea that everyone tells them is impossible. FORGED® is the Architect, the Builder, and the Educator who strives to lay the foundation for their great country. FORGED® is the Warrior, the Athlete, and the Professional who dedicates their life to a discipline that brings great pride and happiness to their families or nation. FORGED® is the everyday Man and Woman who refuses to accept defeat and aspires to make a better life for others before themselves.

YOU are Forged®.
________________

I like that last part, "the everyday Man and Woman who refuses to accept defeat and aspires to make a better life for others before themselves."

I think that describes the warrior moms I know.  Especially those like me who have severely affected children who haven't been "recovered" or "cured" - but who have come so very far from where they first began.

Struggles... Triumphs... Fighting spirit... Everyday battles... Conquering adversity.

Yep, I am forged.

We all in the autism community are.

I guess that's why I'm drawn to everything warrior.  Camo, Combat Boots, their inspirational quotes and clothing.  I need a warrior mentality to survive this "Life with Autism and Seizures" and they help to provide it.  Each and every day it is a battle against something or for something.  It is me David versus them Goliath and most often I feel I don't even have a stone or a slingshot.  It is those days looking back, those hottest of fires, that have forged me into not only the person I am, but the brave warrior mom I never thought I would have to be.

And on Mother's Day while typical moms are getting gifts and cards and dinners and the pampering I can only dream of from their children, I'll simply know that the gift Brandon has given me could never be bought or made.  It had to be forged.  He forced me to face autism when all I wanted to do was hide under a rock and pretend it didn't exist.  Yes, I wanted to do all I could to change his stars, but more than that my desire was to run so fast and far away that the reality could never catch nor find me.  Over the years his autism and his seizures and his bowel disease and his immune issues and all the myraid of things to deal with, have slowly forged a faith that has been tested over and over again by the hottest fires of doubt, discouragement, and disappointment.  Not to mention the many, many, many defeats.  But the world doesn't teach you to value those things.  Mother's Day doesn't celebrate those things.  Hallmark doesn't make a card for those things... 

So yes, on a day when many will be reflecting on the accomplishments and the good in their children, enjoying the things their kids can make for them that mine can't, I will know in my heart of hearts that I am who I am not because of those things, but because of how I have been forged from those other things that aren't glamorous nor graceful.  Because of Brandon I have dared and defied.  I have stood up and I have spoken out.  I have found courage while drowning in a sea of fear. I have learned that bravery isn't always running forward and being a hero, it is sometimes simply refusing to take a step backward or give in.

I learned how to live because of how Brandon survives.  Each obstacle, challenge, adversity, and battle.  He has endured.  He has overcome.  And in the process he has forged a strength in me to do the same.  I never thought I would challenge a medical system.  And I did.  I never thought I would be an advocate.  And I am.  I never thought I would go to Washington, D.C. to speak out for him and others.  And I have.  Three times now.  I never thought I would have to clean up the unthinkable, yet I have.  For an unfathomable amount of time.  Perhaps that's one of the best things Brandon has forged in me -- a sense of humor through it all.

I have had nothing left to give at times, but I have never quit.  I may have been forged from the adversity of autism, but in the process I have found faith, unconditional love, and a HOPEISM not even the fires of hell could consume.

And believe me, hell has tried.

Brandon has forged me into the warrior mom I am today.

He inspires me to do all I can for as long as I can to make a difference for him, and for others.

I am forged.

And I can't think of a better Mother's Day gift than that.


To all my warrior mom friends who didn't volunteer for autism but were forged into it ---
Happy "Ain't-No-Warrior-Mom-Gonna-Get-No-Time-To-Rest" Day!

Perfect love and the fear that opposes it.

The date was April 8, 2000.  The event was the 1st ever Rally for National Autism Awareness and the first ever Congressional Hearings on Autism.  There are a few things that stand out from that day that I'll never forget....

But first, the present.  April.  Autism Awareness Month.  With all it's hatred and division.  All the hideous posts from those who fear our message, causing those who want to help, to be fearful of helping.  And I have to ask myself why....  But I know their motive...  Fear.  In 1 John 4:18 it says, "There is no fear in love.  But perfect love drives out fear, because fear has to do with punishment.  The one who fears is not made perfect in love."  The Message Bible states it this way:  "There is no room in love for fear. Well-formed love banishes fear. Since fear is crippling, a fearful life—fear of death, fear of judgment—is one not yet fully formed in love."  

It is fear that drives those who don't want to be cured, to prevent us from wanting to treat our severely affected children.  It is fear of those parents who have been indoctrinated with the lies that without their child being fully vaccinated they will die.  It is the fear of crippling loss of profits that drive Pharma and the Vaccine Industry to perpetuate lies of safety.  It is fear of losing jobs, elections, prestige, credibility that drives agency directors and Congressmen to side with them each and every time.

But the parents...  Me as a mother of a son who is severely affected by autism...  All we have to drive us is that perfect love for our child.  Not fear of losing money, our job, or our reputation.  Just love.  Nothing else would drive a parent to endure all that we have been made to endure, when we could all just hunker down and shelter in place and not give a rats-ass about anyone else's kid.  Our motive is that perfect love we have for our children and our future grandchildren, that love that drives out any and all fear. 

Back to the events of fourteen years ago and that perfect love.  I sat in the Congressional Hearing room in the audience.  Raymond Gallup was giving testimony about his son Eric who regressed into autism from the MMR.  I remember a part of his story that haunts me to this day.  How when Eric would get agitated, they would all run and lock themselves in a  bedroom.  Living that kind of life, I wouldn't have the energy to be in Washington testifying at a hearing, but he was.  Out of that perfect love for his son, he was there to beg and plead for help.  He was there to give facts on behalf of the organization he founded and the research they were doing.  He was there to give warning to prevent others having to live the kind of life he had to.  And in reply, one of the other panelists or a Congressman, not sure who, but someone asked him what his profit margin was, something about a stock market something.  Something totally ridiculous and absurd.  He had no money.  He was a parent first.  He did what he did out of love, not for profit.

Another parent on that panel was Scott Bono.  I remember his opening words of how he was there before them wearing the only suit he had.  And I have no doubt that was true.  None of us had any money, all the money we had, and more, went to our children.  Traveling cross-country to get help for them, and paying for therapies for them that insurance wouldn't.  We all sacrificed greatly to even be there that day.  We begged and borrowed and pinched every last penny to get there.  Not for what we would gain, but for what we were tired of losing.  Our children.

It was perfect love that motivated the women to stitch hundreds upon hundreds of quilt squares together for that day.  Finding time where none was to be found because of the full-time job of caring for their own children with autism.  It was perfect love that motivated Unlocking Autism to collect and organize and scan in thousands of pictures for the "Open Your Eyes to Autism" picture boards.
Those projects cost them all time they didn't have, and money they sure as hell didn't have. Money that could have been spent on helping their own children, not anyone else's.  Yet again, because of that love, they put aside fear of backlash.  Fear that no one would show up.  Fear of failure.  They instead pressed forward and did what it took to make that event happen.  That event that would bring about help, HOPEISM, and change.  Not just for their child, but for all children.  The only motivation being to halt the epidemic before it got further out of hand.  To tell the truth before the lies could be further entrenched.

That is why it is incredulously insulting to read such hatred and opposition toward us.  But I better understand it.  It is fear.  They aren't driven by the perfect love a parent has for their child and how that drives out any fear.  They just know the fear of the punishment if it ever is actually acknowledged that they caused our children's autism.  Those with high functioning autism who can speak for themselves, are driven by a fear that perhaps if we want to cure our children, their life might be one we want to cure or wipe out too.  I don't know.  I don't know what would possess them to not want to help us help our children possibly be able to speak for themselves one day like they can speak for themselves.  Parents who have children without autism who oppose us, again do so out of fear.  They have been told for so long that vaccines save lives, that they fear their child will die without one.  Little do they know that quite possibly, their child could die very slowly for the rest of their life if they do indeed, get one.  That in preventing a death that might never come, they have instead prevented them from fully living.

And I think what signifies that perfect love that motivates us, is "the incident" of that day.  Those who were there know what I'm talking about.  In the middle of someone speaking, someone went up on stage to the microphone to announce that a child was missing and to please help look.  Without question everyone did just that. Nothing else mattered at that moment.  Everyone who heard the announcement, looked.

Just like it is today with autism.  Our lives have been interrupted.  Nothing else matters but looking, searching, reclaiming.  For truth.  For help.  For change.  Because of the love of our child, and for all the children like that boy who was briefly lost that day.  We would have looked until we found him that day.  No one would have quit looking.  Just like we will never quit sharing the truth so that we might prevent another child's health from being lost to autism. To seizures.  To GI Disease.  To wandering.  To drowning.  To death.

And those of you on the sidelines and even to those in opposition to us, please take note as to just whom it is who is searching for the truth.  It isn't Pharma.  They have no motivation to.  It isn't the Government, it would ruin their credibility to.  And as we have found out, and you will too when autism hits your child, it won't be the doctor you can turn to for help in searching for your child to get them safely back.   

It will be us. 

Those you opposed.

The vilified.  The criticized.  The quacks.  The written-off.  The fearless.

Those of us who have given everything.  And I mean everything.  In a core group of women I was part of on that day long ago, out of five of us who were married at that time, four of them are divorced.  I am not, but make no mistake, we don't have a typical marriage.  We get no regular conversation time, let alone regular date nights.  We have a tag team marriage.  I would say despite that we have a great marriage, but it is definitely a different kind of marriage.  Much has been sacrificed from all of us.  Yet we press on.  That perfect love for our children the driving force that keeps us battling on, even when we lose so very many of those battles. 

And that's the perfect love those who fear us and oppose us will never understand.  They will continue to not help us, yet we are fighting so that nothing ever hinders their children's or Grandchildren's health.  We were supporting programs to fund wandering prevention.  So that if their children became one of ours, there would be resources for them.  Those who trashed Chili's wall against us, did so out of fear of what we represent.  The greater the truth we share, the greater the opposition to counter that truth.  Chili's caved into that pressure out of fear of lost profit.  We have nothing to lose.

I guess the only thing good about this month is that we aren't the only ones whose truth has been mocked and heckled with such ferocity. 

Where we only feel battered, beaten, and bruised, he was all those things.

Where our cause is being crucified, he was crucified. 

The HOPEISM I find in all of this, this month of autism and Easter, is that no matter whether truth is a person such as He is, or a cause such as what we warrior moms and dads advocate for, while it can be temporarily killed and buried...

It can never be permanently defeated.

It will rise again.

We will never quit.


That is the beauty and the HOPEISM that I will cling to the remainder of April.

No Way...

April 2000:

A poem about  Autism Awareness

By Michelle Guppy and Carol Fruscella – original idea - Carol J. Fruscella

April 8, 2000

It is a bright…. Clear…… spring day.  There is a gentle breeze in the air…..  As you walk toward the mall area in Washington, D.C., you see the Cherry Trees in Bloom……………………you stop and pick a flower……..and it reminds you why you are there…

For the day that your child would be freed  from the limitations of Autism – to  be able to

Touch…….  Smell………  Explore ………

For the day that his black and white world………. would have color………

The birds are singing, and the sunshine feels so good on your skin.  The preparation for this day has been trying  and hard.  It was a long and  cold winter in many ways………….  Many times there was doubt that this day would happen……..   This day is a Miracle in so many ways. A day where  all of our efforts have come full circle.  A sense of achievement overwhelms you……….

As you enter the mall area…………. your breath is taken away by the sight of  thousands of pictures.  You stand still at the power of what they say……..each child’s face silently telling  their story………. each one waiting, deserving of only the best.

You see Grandma and Grandpa scanning the  boards, trying to find their  Angel’s picture.  You hear a small voice go “EEEEEEEEEEEEEEEEEE… .”  You see  another child point,  “Daddy, that’s ME!”

The Autism Awareness Quilt is on display……………..but it’s so huge – you will never find your child’s square!  “Cure Autism Now,” one says – “ Save my brother,” says another….   .Oh, there it is over there, your child’s colorful scribbles on fabric that bring tears of joy and pride………

In the background, you hear speakers, telling the Nation of the need to help these children – and for the first time in a long time…….. you have Hope that this is the event that will  make it  so.

That there would be unity and awareness…..

That there would be a cure…..There are so many people………….who have traveled so far for this rally……..so many new friends……..so many stories to share………………we lean on each other for support………knowing that this is just the beginning…… of a journey that  will continue on……..  to raise Awareness……….to get answers……………..to get the help and support  we all need.
Close your eyes…….. imagine being  there…………Hearing the silence of  those who can’t speak………Hearing the voices of those who can…………

Dusk  came over Washington, D.C. …………..

A dropped Awareness Ribbon is all that is left of that day…...

Now open your eyes………..

 

Be there to make history and help keep the dream alive.
 

April 2014:

The title of that poem was "A Dream Come True" -- I think now, on the verge of April 8, 2014 -- it seems like it would be best titled, "The Nightmare Continues."

It breaks my heart to think that. 

To write that. 

Never, ever, back in the 1 in 500 rookie autism parent days would we have ever fathomed numbers of today, 1 in 68.  Never would we have fathomed we would be veteran parents.  No, not us, our children would be cured by then.

Not ever would I have fathomed reading blogs from folks sharing things as if for the first time when we veterans experienced them over a decade ago.  New revelations that are actually old news for us.  Same ol', same ol'.  New autism organizations formed to take yet more money from the established ones who need the money to be even more effective. 

People hindering instead of helping.

The things that are new in terms of treatments and opportunities are still not accessible to those without the means to obtain them.


It's hard to bear at times. 

For that rally, for those Congressional Hearings, we worked so hard.  We gave everything, and more.  And we have continued to do just that.  I hear so often people sprinting out of the starting blocks with new ideas and new goals, only to peter out in the name of having to take a break to focus on their own children.  All the while, us veteran parents have had no choice but to do both. Find a way to do more, sacrifice more.  Heal our own children while saving the world from autism.  No break.  Who would then pick up the slack?

I sit here still stunned by the sheer numbers now vs then.  But I can't help but smile too.  I don't feel we failed, I feel we just haven't won yet, and so must keep fighting.  No, the only ones who failed, are those doctors and agencies who we have reached out to for help, but who have instead turned their backs.  They must live with the realization that they could have stopped this epidemic, but didn't.

We who forged paths when there were none haven't failed.  We worked.  We followed the truth no matter where it lead because we had nothing to lose.  We didn't merely light things up blue and think we were actually changing anything.  We listened to the truth, and we acted on it.  And we did it from our own homes, with no pay.  No one in a fancy office receiving a salary has even come close to those achievements.

No, we haven't failed.  Not us who were there from the beginning on the message boards late at night, all night.  Not us who called, faxed, rallied, wrote, and researched.  Not us who endured scorn, humiliation, threats.  Not us who spoke truth in an ocean of lies.

Not us who saved pennies to be at rallies and Congressional hearings because it was that important.

Not us who made history by standing up and speaking out.

Not us who will NEVER QUIT in helping to keep that dream of so long ago, alive.

In that poem above it speaks of thousands of pictures.  That's what it was then.

Today, it would be 1.2 million pictures on those boards.

I have the dream now that I did then.

When will anyone hear that silence?

The "A Call to Action" Autism Awareness Quilt stitched together in 4x6 panels by Nancy LeGendre.

Bernard Rimland.  I wonder what his thoughts of today would be.

The "Open Your Eyes to Autism" picture boards by Unlocking Autism.

Brandon.  The reason I went there...

Kyle Walsh at our prayer meeting before the rally.

Brandon's quilt square.

This picture below...  This mom represents my thoughts today. 

No Way. 

No way this epidemic of autism can be worse now than when we began our fight.

No Way.

No way those agencies designed to protect our children's health are still turning a blind eye to researching the obvious, vaccinations, toxins, etc.

No way there's not an appropriate, community-based program in place to care for my son long after I'm gone.

There's just.....no way this amount of devastation could be real.

Yet,

It is.

 

Lark Rise to Candleford

I was born in the wrong era in a way.  I love the simplicity of shows like Little House on the Prairie, Christy, Dr. Quinn Medicine Woman, and any of them set back in those early days...... 

The latest show I've been recording to watch, is Lark Rise to Candleford.  I watched an episode last night, Sunday night, the eve of the Lenten Season.  Though I don't claim any particular religion, I do love the meaning of Lent. The focus on the Lord.  A time to truly make Jesus' journey to the cross, to death, and resurrection, the center of my thoughts.  

The drama of that show centers around the Post Office.  They were to have an annual inspection by the Inspector General.  In doing the audit, it was found that when a directive was sent out to have Sunday hours, they were not in compliance.  When asked about it, the Post Master said that their carrier was a devout Christian and did not wish to work on Sunday.  They were told they must do those hours on Sunday or be reprimanded and the person who refused replaced by someone who would.

As it turns out, that next Sunday, the devout Christian postal carrier had been asked to deliver the sermon at his church.  He was so excited about the opportunity! But now he was faced with having to choose between two masters:  his work, and his God.  Sunday morning came and found the man sitting in the Post Office in his postal carrier uniform in obvious distress.  In agonizing over what to do, fear had won.  He was at work.  The church members in church a few blocks away shifted in their seats as it was 10:10am, and there was no one in the pulpit to deliver the sermon.  Then suddenly the doors of the church opened, and in walked that carrier wearing his Sunday best.  Complete with the stress and sweat of the decision he had made. 

He would serve his God no matter what the cost.

He nervously spoke to the congregation these words:

.....six days you shall labor, but the seventh day is a Holy Day.  A man cannot claim to serve God unless he overcomes all of his petty fears and selfish desires.  I copy these sentiments from the book.  The book I do love.  But what are those fears... Don't feel petty, now, here, today or then.  What if a mans desire is to do his work, take his rest, and then use that day to do whatever he chooses.  I choose this place.  But I know that I go about preaching about devotion and sacrifice, but perhaps God saw fit to put me to the test.  But my heart tells me that I have failed.  My courage snapped in the night and I couldn't put it back together.  But I stand here now because I want my devotion back.  If we believe then we must live by that belief no matter what the cost.  Today, is the Sabbath Day, and what I see before me is your faith.  You give me strength.  And I thank you.

Those words were what I needed to hear as I begin my own Lent focus.  In a way I feel like that postal carrier.  I feel like I've been put to a test.  Who will I serve daily? Autism's fears or God's faithfulness?  I feel like in some ways I have failed that test.  Some days the disappointments overshadowed my faith.  Many days they did.  Not just autism's trials, but life's as well.  But his words, "If we believe, then we must live by that belief no matter what the cost" remind me that I must do a better job of conquering those petty fears that bombard me daily and those selfish desires where all things happen as I feel they should, not as God has purposed or planned.

No one knows more about "no matter the cost" than Jesus.  40 days of fasting in the garden.  Taunted.  Tempted.  Tired.   His journey even harder.  Belittled.  Betrayed.  Beaten. 

He certainly served his God no matter the cost.

And for him, the cost was his very life.

I stand here now on this first day of Lent, much like that postal carrier, wanting my devotion back.  I am tired of anguishing over things that disappoint.  Anguishing over things I fear that will once again disappoint!  I do not want my courage to snap in the face of all the trials I must face.  I want to live by HOPEISM and Never Quit no matter what  more it may cost when I feel that I've already given all I have.  The one I choose to serve, who will provide for all other needs.  He will sustain.

I'm glad I stumbled upon that show.  Glad I watched that episode on the night I did.  And I'm glad for this new opportunity that this new season of Lent brings.  For a new journey.  A new beginning.  A new series.....

To Rise again and again and again with HOPEISM.
Like that mail carrier, we all have a choice to make. 

Each and every day we wake up, we choose to defeat, or be defeated.

I choose to serve God.
I choose HOPEISM.

I choose to be Happy.
I choose to live Joyfully.
I choose to follow Christ.

(and of course, I choose to wear Camo!)

I choose NDCQ!

HOOYAH!


Life with Autism is a hard journey. An isolating one.  A humbling one.  One filled with more tears of sorrow than tears of joy.  But it's a blessed one.  It's a meaningful one.  A purposeful one.  And because it is orchestrated by the most loving one, I know above all that it will be a fair one.  Even on the days like today where it seems oh so very unfair. 

Like that postal carrier, above all what I know and see about this journey is the thankfulness that it is not a lonely one.  Before me is a community of warriors, friends, and prayer partners.  Each of you give me strength. And I thank you.

When HOPEISM hurts...

Blessed are the tears that fall
Clean the windows of the soul
And usher in a change of heart
And bring a joy that angels know

I thought about those lyrics in that song during the wee hours of the morning as my own tears were flowing.  The silent, sobbing tears of a mother for her child.  Her child with autism, seizures, immune dysfunction, and a whole other buffet of adverse reactions to vaccinations.  When I heard my son cry out in frustration at nearly 3am, I trudged into his room.  I saw that he was still in bed.  Wanting to sleep.  Trying to sleep.  But simply could not.  So I laid down beside him.  He settled down after a bit.  As he tried to go to sleep, I could hear he kept swallowing. Over and over.  And I wondered, "What now?" What is this new thing?  This thing that is keeping this sweet boy who wants to sleep, from sleeping.  Allergies?  Some throat issue?  Reflux?  What is making him swallow over and over...  And I went through all the scenario's of how I would even check that out.  Upper Endoscopy?  It would take months to find someone to agree swallowing over and over isn't just a "behavior" or isn't simply "just autism" to then jump through all the hoops of having that done under anesthesia.  As in no lifetime of ours, would he allow that as an office procedure with mild sedation.  Does he have fluid in his lungs or something from seizures, a cold, and how on earth would I get him to sit still for an x-ray?  His bed is raised, I made sure he was propped up even more on pillows in case it was allergy drainage...  He seemed still for a few moments so I tried to sneak out and go back to bed.  Before I got there I heard him doing that swallowing sound again and then his familiar crying out in frustration.  He wanted to sleep.  Oh how rare that is sometimes in "Life with Autism" and how cruel that is how when he wants to, he can't. 

I laid beside him again, helpless to do anything else but be there and go through it together.  I love that about Team Guppy.  Todd and I have always tried to be there with our children and go through any hell they are going through.  Right there with them.  Helpless to help them through it, but right there with them through it.  And as I laid there thinking about the cruelty of Brandon actually wanting to sleep but couldn't, I couldn't help but start silently sobbing out to God.   Asking him how he could be so cruel to Brandon like that.  Telling him how I have experienced God through Brandon's autism and how it has changed me, all of us, but how for once in a very specific way, I would like Brandon to experience God in some aspect of healing.  Every ounce of weight is a struggle for Brandon to keep.  Every day seizure-free is a struggle for him to get.  Every seizure is a struggle for him to even survive.  Every everything is a struggle for him.  Why does simply sleeping have to be one too?  Why God, why can't you heal that one thing that is causing him to do that?  Why can't you give me divine wisdom to even know what that one thing is and how I can fix it?  Every time Brandon made that swallowing sound, I sobbed and asked God why he couldn't just heal that.  And then Brandon would do it again.  And I would be reminded of how cruel I thought that was.  And then I sobbed some more.  And it made me angry.  Angry at how I was laying there angry over acute prayer issues I hear about.  People having a one time surgery, people with illnesses they can and will fully recover from.  These are people who have all lived full, typical lives.  And who will again afterwards, with a few modifications perhaps, but still a fully functioning life.  And then I think of the sweet chronically ill boy laying beside me who has so many medical dysfunctions, and who has had them for so very long, and who wants to sleep but can't.  Who can't even tell me where it hurts.  I'm not sure which I was most hurt by, those ugly thoughts I was thinking, or how cruel I felt God was in seeing my son simply struggle to get the sleep his body so desperately needs.

Oh how I wanted Brandon to experience answered prayer in some of, one of, those specific prayer requests.  We have so many a'la'carte' blessings, but last night in those wee hours of the morning, I wanted the main course answer to prayer for once. And as I those silently sobbing tears ran down my cheeks, I let God know just how cruel I thought that was that this sweet little boy didn't at least deserve that.  All he wanted to do is sleep.  And he couldn't.  And I had no clue how to help him except to keep crying out to God for him.  Yes, even in anger.

Sometimes HOPEISM hurts.  Mary knew that.  The only thing comforting me last night was knowing I wasn't alone.  Mary had to watch her son being beaten.  Humiliated.  Hung on a cross to die.   Jesus must have had some of the thoughts maybe that I did as he was in a desert fasting or days on end and being temped by satan to the point of sweating blood.

You need to know you've got a friend in Jesus
You need to know he felt rejected too
Humiliating pain and unjust treatment
He's been there so he knows what you've been through

HOPEISM simply hurt last night.  For my son, for me, for his future.  When I'm gone one day, who will hear him cry out and get up in the wee hours of the morning to trudge down the hall to lay beside this sweet boy and comfort him, stroke his arm, cry out to God for him?

Who will weep for him?

And God will send a merciful Peacemaker
Comforter of all of those who mourn

It's a personal faith crisis I had to deal with last night, and it's a very real societal crisis that has yet to be dealt with.  They are thousands of Brandon's out there who need medical help now, who will need such lifelong care.  But as for me and this new day where the rain is softly falling and at 10:30am Brandon is finally sleeping, I have to simply acknowledge and accept that sometimes HOPEISM is going to hurt.  But always know in my heart of hearts, as I do, that HOPEISM heals in its own way, in its own time.  And that hanging on to the hope in HOPEISM will always be worth it.  Will always be better than the alternative of living a life seeing no hope.  Finding no joy.  I'll probably never understand HOPEISM, but I'll always have have faith and believe in it.  Even during nights like last night, when I never saw it, or even felt it.


Blessed are the tears that fall
Clean the windows of the soul
And usher in a change of heart
And bring a joy that angels know
Psalm 30:5
".....weeping may endure for a night, but joy cometh in the morning."


Indeed it does....


To the NDCQ of HOPEISM of that...

HOOYAH!