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!

A Rainbow of HOPEISM...

I love how God knows me.  I want to know the ending before the beginning.  On most things I have written, I did it from the bottom up.  I wrote the ending, then filled in from the top down.  I've never been one to go with the flow.  I've never met anyone close to that until I met my daughter-in-law.  She came over one day wearing two different colored socks.  I thought that odd.  Then I smiled.

It was a chilly walk at the Nature Trail this morning.  In more than one way at that.  January is supposed to be a "New Beginning" -- a time to look forward with anticipation of the year ahead.  And it is.  It is a new beginning.  I do have such anticipation of answered prayer in the year ahead. But still it's only January, and January has been hard.  I've been reminded of so many unanswered prayers of the past few years with regard to Team Guppy.  In my "Life with Autism" is it also a "Journey Closer to God" in that I can't survive one without drawing closer to the other.  The harder life with autism gets, the more I must draw closer to God.  Even though at times the closer I try to get to Him, the farther away He feels. But still, I press on in faith.  And in doing that, is the realization that goes against most popular schools of preaching-style thought.  In that sometimes being good doesn't mean bad things will not happen. That working hard doesn't always equate to having it easy.  That if you say a prayer, it will be immediately answered.  One thing that I am better understanding through the journey, is that a Sovereign God is one whose sovereignty you may not understand, but must accept if you are to find any joy at all in the journey.

That's where the rainbow comes in.  I saw it at the beginning of the trail.  I took a picture so once home I would be able to see if it really was one right there beside me or if my sleep deprivation was catching up to me. I've walked that trail dozens of times and have never seen something like that.  I knew what all I wanted to share with God, ask God.  God knew too.  I guess that's why he placed that rainbow right there before I could begin so that throughout my walk I would be reminded of His promises. Be reminded that though at times I feel like I'm alone, I'm not.  He will always be there to wrap me in a rainbow of His HOPEISM.  I like that about God.  He knew I would know that I will most likely not get the answers I seek any time soon, but he wanted me to simply know that He is the answer.  That rainbow....   His reminder of HOPEISM.  His comfort for my fears.

I walk the Nature Trail alone because that is my time with God.  To listen to my worship songs and just sing them to Him.  In thanks.  In blessing.  In awe.  In total humility.  I have to be out and away and have that undistracted time where there's no facebook, no laundry, no trying to drown out the making of my grocery list so I can focus on the reading of my prayer list.   When songs come on that invite prayer, as in the song "Lay Em Down" -- I do just that.  I did just that this morning.  And boy was there a lot of laying down to do.  Oh how I 'slammed down' with tears a few things that have been such bamboozlements in my life lately.  Things where I know God has a plan, but I am so discouraged and confused in that what is going on right now cannot possibly be that plan.  Oh how I'm praying those setbacks and disappointments are merely but a growing process portion of that plan. And then there's the realization that what if the plan and desires we have, are not God's plan at all?  How could I possibly ever accept if His plan is different than ours, that whatever that plan is, will be more perfect than the thing we most wanted?  How can God have something better in mind than the thing you most want with all your heart, soul, and mind?  I laid that all down to God.  I continued to walk.  Continued to smile at the rogue rainbow I saw, and continued asking the questions I know that I will not immediately get an answer to.  If ever.  How.... How can where we are now be that plan to prosper us...  We were created for more.  We want to do more.  We can do more.  I prayed that for each of us in Team Guppy.  I prayed that for an entire autism community.

And I do leave those things at His feet.  But I think what people outside of "Life with Autism" do not get, is that there is still a cross to bear in that.  Laying something down at God's feet means that you know only God has the power to deliver that prayer.  Relieve that burden.  Heal that illness.  But in believing that, there is still doing to be done.  I read a blog recently from NDCQ where he is sharing how positive thinking is a big part of success, but that positive doing is what allows you to succeed.  You can sit in a dark room all day long and think positively about the light being turned on.  But until you get up off that chair and turn it on, it will still be dark.  I think in the Christian community there is way more thinking about the light than actually turning on the light.  We're lit up pretty brightly from our Bible Studies and our fellowships and we help light the darkness thousands of miles away, but what about our brothers and sisters around us in our communities who are suffering from chronic illness, isolation, and fatigue.  Are we only sitting in our churches praying for the light to turn on for them, or are we actually getting up and turning it on by helping to be that light for them?  And I think in the autism organization community, there's way too much changing the light bulbs to blue to distract from the fact that they've never even turned on the light to directly help any of us in our dark.  I don't mean any negativity or condemnation in those words, only to share the stark reality of those words.  I have more e-mails of parents in my community needing help, than our community is helping with. And then there's the warrior mom's and dad's -- faithfully fighting, faithfully doing.  Always...

I think what has totally caught up with me, is how Life with Autism is an unbearable weight carried by many, relieved by only a few.   It's an unthinkable amount of doing, no matter how much positive thinking or warrior mentality we are doing it with.  And doing it with no breaks, no weekends off, and for so many, no, or too few and far between, -- vacations to get away.  For many, they do it with no sleep.  Advocacy in life with autism is an even more unbearable weight.  One where you just can't sit in the room and wish the ugly away.  One where you must get up, put on your war paint, and battle it until you obliterate it.  There is such sacrifice in that, a toll that can't be quantified.  I just don't know how people do it without believing in the power of a God who makes that unbearable weight, bearable.

That night and day difference between chronic and acute illnesses has just astounded me this month.  How so misunderstood it is.  And I know there are many kinds of chronic illnesses, but I can not think of any more inclusive than autism.  True autism, not celebrity or neuro-diverse or self-advocate Asperger syndrome.  The kind of autism my son has where he cannot read, write, or speak.  Where he is in pain and can't express it in any other way but self-injury.  Where he has seizure upon seizure and because what he has is so complex and controversial that traditional medicine tries to revise it away because the reality of what "it" is, is something they aren't willing to even acknowledge.  The kind of autism where he is in constant motion and in need of constant supervision because he is a constant flight risk.

And yet as I walked the Nature Trail this morning, I was reminded in that even though we lay down those prayers and those burdens, and even as we carry the cross of healing and advocating for our children, there is such purpose in it all.  Trust me, each in their own way, we parents who have children, youth, and adults who are severely affected by autism, know the good.  We see the blessings in things they have taught us versus what we've tried to teach them.  How else do you think we can survive?  One of the worse things you can say to such a parent when they are overwhelmed, is "think of the blessings.....".    How else do you think we survive such isolation, such expense, such setbacks, such enormity of how autism affects each aspect of our life, our marriage, their life, their future?  It is only those things, and the HOPEISM of good things to come, that keep us going.  I guess that's why when walking I find myself saying out loud, "I went to Hawaii last year!  I climbed down a volcano crater and then back up to the summit of the volcano to watch the sun set through the clouds..."   In all the prayers that weren't answered, in all the disappointments, I had that.  I had many little things, but they are sometimes dwarfed by the very big things of "Life with Autism."  Hawaii didn't cure my son's autism.  Didn't make me any richer to afford new and better treatments.  Didn't take away the daily stress or fear of the future.  It simply allowed me to escape autism.  It allowed me to experience my unimaginable.  It was something I would have never imagined, it was something I really did do.  I still marvel at that. It was my rainbow at a time I needed one.  Just like today's rainbow was.

I still have the same yet-to-be-answered prayers for those in Team Guppy.  I still have the same frustration in not understanding the interim of what we hope and work for, and what God's will in all this will be.  And I still bear the incredible weight that many of us in the autism community bear -- in trying to right a very big wrong in what has created the most horrific epidemic in my lifetime.  In trying to overcome with truth, some very deeply rooted lies.  And still no one but us, will ever fully understand any of that.  What NDCQ is, what Never Quit means.  How chronic, chronic really is.  How we can keep dreaming and daring and doing.  Others will read things such as this and assume we're depressed or are having a self-pity party.  They will tell us to "count our blessings" and shallowly, yet in all sincerity, say that they're praying for us.  But much like the story about positive thinking, for those of us living with chronic, lifelong situations such as "Life with Autism" -- what we really need in addition to prayer, is more people getting up off the chair to help turn on the light switch.  More people trying to imagine a day in our shoes and thanking us for helping to prevent them from having to lace their own up when autism comes knocking at their door and snatches their child.  More people asking specifically how they can pray for us, our children.  Asking what they can do for us like what Hawaii was to our family.  A chance to get away.  A chance to see a dream come true.   An opportunity to do what has been unthinkable so that we can come back with fresh wind and fresh fire to tackle our seemingly impossible with the renewed HOPEISM of possible.

I had so many questions this morning, such heartache for all who are hurting around me.  I needed encouragement from the One who encourages.  I needed it for me, and to give to those like me who are hurting and who are tired of the chronic-ness of autism.

I guess that's why God sent that rainbow as an answer before I could even get to my many questions. 

And why He sent a Savior before we ever knew we needed one.

I just love how God works like that.

~~~~~~~~~

Life with Autism is black, white, and gray.  The chronic nature of the illnesses our children, youth, and adults bear is not neat and tidy as we tend to want everything to be.  It is hard and it is messy and it is tiring.  To those friends of mine living that life, I pray for you a rainbow of HOPEISM to encourage you through it.  To be that answer to the questions and the comfort to that fear.  To those around me and around those friends, who aren't living life with autism, I ask of you to pray for how you can be someone who gets up and helps turn the light on for them, in whatever way you can, with whatever gift you've been blessed to help with.

To those who have not just prayed, but who got up and helped turn on the light for my family, I thank you so very much.

Our Old Fashioned Christmas...

I bought myself a Christmas present.  I've always wanted to make some sort of "family tree" where I could be surrounded by all our past and present family members. Some stencil of a tree on the wall with pictures as the leaves, or just a Christmas tree left out all year with family pictures as ornaments.  But alas, in "Life with Autism" there is seldom time for such projects.  I'm still working on getting family pictures in a stand up wall divider frame thingy that I bought months ago.  I actually started to add some here and there, and my husband was like, "Don't take those pictures off, (that came with the frame) those people are like family now that they've been with us so long!

Well, I found this revolving ornament tree online, and knew I had to have it for my "project."  It was perfect.  For Christmas, the plan was to go and buy an ornament that to me, represents each family member.  So that when I see that ornament on that tree, I would think of them.  Then for the rest of the year, I would take the ornaments down, and replace them with a hanging picture of that person.  I give myself about a year to get that done!  Ok fine, two years......

But since I'm crazy, mad, weird me, I wanted to make it something more.  I do not like the concept of funerals.  I'll just blurt that weirdness of mine out there.  Seeing someone in a casket the way they never looked in life, is just wrong.  Saying kind things about them that 1) they can't hear, and that 2) you've never said to them when they could hear you, is just wrong to me.  So the past couple of Christmases I have begun taking time to send a Christmas letter to those who came to mind as to being a special blessing in our year.  A yearly eulogy if you must.  Just sharing with them something that blesses me about them.  I just, want those in my life to know how I feel about them while it counts.  And what a gift that is to receive - encouragement from others. 

It was such fun.  Going out to the store and really thinking about the person who I would buy an ornament for, what would represent them, and then coming home to write a Christmas letter to them about why I chose that ornament and what that person means to me.

For our Christmas -- when my Navy-son and his wife came home after Christmas, I invited her family and ours over for our Christmas dinner and to do this Christmas project.  I had 15 or so Christmas bags that had an ornament and a letter in it.  I cut out enough strips of paper with numbers on them, one for each of us.  After each number was written either "Past" "Present" or "Future".  Meaning that when each drew a number, when it was their turn, they would share a story of Christmas past, Christmas present, or a hope of Christmas future.  It was a time of "Old Fashioned" sitting around the campfire telling stories.  Not doing anything, not watching anything, just listening. Just really getting to have a glimpse of someone else's life.  Hear their story.  I cannot tell you what a blessing it was.  Such a time of love, laughter, and tears in sweet remembrances of Christmas past.   Thankfulness of Christmas present and all who were with us.  Some people who I've never really heard share any story, shared the most touching of stories.  Some stories I had forgotten.  When it was my mom's turn, she had Christmas past and shared about how one year as a single mom she couldn't afford a Christmas tree for my brother and I.  I was working at the Dairy Queen, and she said one night before Christmas I knocked on the back door, she opened it, and there I was with a Christmas tree I bought for us.  She said that was the year I saved Christmas.  I had forgotten too, that one year many Christmases back, my father-in-law had written each of us a letter asking about our salvation.  He had "Christmas future" beside the number he drew, and he shared again how it was his prayer that each of his children and grandchildren would be born again so that he would be with them for all Christmases in eternity.

After everyone shared their Christmas past, present, and future story, they could open the ornament from in the bag with their name on it and hang their ornament on my "family tree" while I read a letter to them that would be their gift from me, that shared why I chose that ornament for them.  It was such a sweet time of lifting each other up. 


My brother and his wife - the "Holiday Hug" Raggedy Ann and Andy ornament to symbolize their triumph over a rocky start to their marriage.

For the below ornament, a family member had shared last Christmas when we made "Names of God" ornaments for my Log Cabin tree, how he was so thankful for how the Lord has saved him from past mistakes.  His ornament for my Log Cabin tree said simply, "Savior."  So I found the "Wonders of His Love" ornament for him.  In the letter I wrote to him I shared how one of the greatest wonders of God's love for us, is indeed how He saves us, forgives us, provides a new future for us....  So very many are the "Wonders of God's Love" in that! 

For my Navy-son Matt, his ornament was Superman, and in his letter I shared about how proud I was of him for all the "super-human" things he has accomplished.  Truly, the boy has been Superman in all he has done. 

The time it took sitting at my desk each night in writing a simple one page letter to them that would be their "gift" from me, was just a precious time.  A time to really think about that person and pray for them, and write something to them that would hopefully be a blessing to them.

I pray that God will impress upon my heart more creative ways to do that each year.  Allow the gift to be words of encouragement to others that will last a lifetime.  A way to keep Christmas "Old Fashioned" in us all sitting around the room telling stories of Christmas past and present and our hopes and prayers of Christmas future.  Sharing of ourselves, something money can't buy and that is such a priceless gift, versus simply giving what money can buy that will be soon forgotten.  I am so thankful to God for impressing upon me the idea to do Christmas this way.

Perhaps the perfect ending was this last ornament.  "A Charlie Brown Christmas" ornament that to the person it represented, represented the simplicity with which they live their life. That person has little money, few things, and whose clothes he possesses could probably all fit in one suitcase.  That person whether they knew it or not, taught me how you don't need things.  He has done well with only the few things he has.  I want to be like that.  I want Christmas to be that.  Back to the basics.  Old Fashioned.  People sharing stories, not always presents.  Memories being made, legacies being solidified in the stories told.

I thank Brandon for perhaps being the Angel God used to impress the Old Fashioned Christmas desire in me.  When there are no gifts to give the child who knows not what a gift is, as the Drummer Boy sings in that beloved Christmas song --- you simply give of yourself. 

"And the Grinch, with his Grinch-feet ice cold in the snow, stood puzzling and puzzling, how could it be so? It came without ribbons. It came without tags. It came without packages, boxes or bags. And he puzzled and puzzled 'till his puzzler was sore. Then the Grinch thought of something he hadn't before. What if Christmas, he thought, doesn't come from a store. What if Christmas, perhaps, means a little bit more.” 
 

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

 

And then... a few days after we did our "Old Fashioned Christmas" - Team Guppy 1.0 went out and came back with this cross ornament and a sweet letter to me - so that I could be part of the family tree as well.........