Life in the dome

Is God ever caught off guard?

It's been a difficult summer.   That's such an understatement, surely there must be a better word. Unbearable, unbeievable, somedays I'd go with unfair.  It has felt impossible.   I have written a great many blogs this summer, none of them fit for anyones eyes but the Lord's.  He is the only one I could trust to read them, and understand.

We live in the land between...
The land between all the prayers we send to our God,  and the place of answers.  Right in the middle, waiting.  How often I have talked of sitting in God's waiting room.

"Here we are you and I, sitting in God's waiting room.  He didn't answer our request, with a Yes, a No or Maybe.  He just said, wait here, and I'll wait with you."


Britton has been so very ill, so very violent, so aggressive, so very very sad.  He is struggling like never before, and that is saying something.  This boy, this young man, this beautiful boy child that we are raising, has been through so much more than anyone should ever walk through... he is very much a soldier suffering from PTSD, yet he is still in the battle, everyday for his life.  So, I guess I should understand, this is war.

Ephesians 6:12
For we wrestle not against flesh and blood, but against principalities, against powers, against the rulers of the darkness of this world, against spiritual wickedness in high places.

Recently I met a soldier, well really I met his dog first.  His dog "Keyed in on me."  At least that's what he told me.  He had been in Afghanistan, and had ended up in a coma for three months.  His dog, was a PTSD dog.  His dog is trained to recognize soldiers in distress.  I stepped up beside him and this dog, pointed and begin to whine.  He immediately begin to lick my hand and attempt to comfort me.  The man asked if I had been a soldier.  I was really speechless at first, but then I said, "well I'm a warrior mom, that does make me a soldier."  I kept thinking about how we are all soldiers, some of us just in different battles.  How interesting that a dog knows, and can be trained to sense distress.   I so wish Britton had been there.  How would that dog respond to him?  That dog, (his name is Sargeant) he did comfort me.  Thank you Sargeant!  I'll take the cold nose and dog kisses, any day.

This July we went on a vacation.  One we save for every year, takes 12 months to get the money, and this year it was going to be way more back packing our food, and carefully planning where we spent every dollar.   We go every year because Britton loves it.  He even says some words while we are there.  It's worth it just to hear anything he is thinking.  We spent not even 24 hours on vacation and realized he was very ill.  We spent several hours in the Emergency Room parking lot, just waiting, so unsure of what to do.  He had some type of extremely strange seizures, of hallucinations, several days in a row.  They would come and go, there didn't seem to be any pattern.   He didn't eat for 8 days straight.  He had a three hour complete meltdown one night.  The thing of serious nightmares.  We were shaken, scared half to death and black and blue.  Britton was too.  When it was over, and he came to hinself,  he cried and cried, just not understanding what had happened to him.  We were so clueless and afraid.  So many times in his life, no one knows what's wrong.  This was just one more of all the very strange set of symptoms we were experiencing.  I really have no idea if he even knows he got to go.  We realized after we had a second to think... that besides being in a severe crohn's flare, he was again suffering from the autoimmune encephalitis that he battles so often.  This was his worst bout and he was in a complete brain fog.  This picture was the only day he seemed truly coherent.  I pray he remembers we took him to his favorite place,  We debated back and forth if we should even try, and yet these pictures were the only signs of any real understanding we had while we were there.

We got home, because God is just so merciful.  God's people responded to our pleas for prayers and what a blessing it was.  Fourteen hours on a plane, and somehow we got him home without serious incident.  That my friend was a miracle.  We were home less than two hours, and unpacking.  We had been awake for almost three days, because he just doesn't sleep when these things occur.  He had finally eaten a meal, and ran and jumped in the pool.  We were so relieved that he seemed better.  In a very short time, we found him face down in the pool floating, face blue, not breathing.  We learned later he had a seizure.  Randy pulled him out and performed rescue breathing, and I dialed 911.   He swims all the time.  He has not had a grand mal seizure since February, which was caused from dehydration.  He did not have a seizure disorder that we needed to worry he would drown!  He swims EVERYDAY!!   To say we were shaken sounds so small.  I have lost count of all the times I've seen my son, blue and not breathing.  But trust me, it never loses the horror factor!

God was NOT caught off guard.

Written on my wall is the phrase, "When you can't see God's hand, trust His heart."  It seems wise to hold on to the unchanging character of God.  At times like this,  I have to remind myself that God is still sovereign, He still knows my name, that angels still answer His call, and that Jesus still saves souls.

Max Lucado says, "Pray out your pain.  Pound the table.  March up and down the lawn.  It's time for tenacious, honest prayers."  Oh how often God has heard from me.  We have definitely had a great many seasons of "intense communication."  However, I never worry that God can't handle my words, my despair.  He's bigger than that.

"God is NOT sometimes sovereign.  He is not occasionally victorious.  He does not occupy the throne one day and vacate it the next."   God knows, and He has a plan, and He will work it for our good.  I can trust Him for that.  I do trust Him for that.

A few days ago, when Randy and I were praying together about some VERY serious problems, that affected Britton's ability to attend school.  I had a vision of sorts.  I don't know how to say it any other way.  I saw, a picture of "the dome."  I KNOW there is no physical dome that can be seen, but I believe that is what I saw.  The dome I speak of is the one over Tel Aviv, Israel.  I had recently read an article about how they have a large radius over the city that protects against incoming missiles, they call it the iron dome.   It is some type of anti missle protection that takes rockets out in mid air.  If it were to miss one, an alarm goes off, and the people run for shelters.  Recently, they did miss one, and many waited to die.  But somehow, the rocket was shot down anyway.  NO ONE has an explanation.  Their enemies wrote in their paper, "Their God shoots down our rockets!"  What an awesome God we have.

A graphic depicting how Israel’s Iron Dome anti-missile system protects urban areas.

Rafael Advanced Defense Systems/Screen grab

Back to the "vision."  What I saw is a dome around Randy and I.  The Lord kept telling me, you see, you are safe in the dome.  You never need to worry, I am your protector, I am the dome.  Wow, just wow.  As difficult as this summer has been.  We have struggled with severe illness, with insurance companies, with misunderstandings, with so much fear.  All that time, we were under the dome.  All the struggle, all the "fiery darts" of the devil, just hit the dome.

God's purpose from all eternity is to prepare a family to indwell the kingdom of God.  "I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future."

That says straight out that, God is PLOTTING for our good.  In all the setbacks, the slip ups, even in all our mistakes, GOD is ordaining the best for our future.  Every event of our days is designed to draw us toward Him and our destiny.
Every single thing... No exceptions.

When I cannot understand my Father’s leading, And it seems to be but hard and cruel fate, Still I hear that gentle whisper ever pleading, God is working, God is faithful—Only wait.

–A.B. Simpson

I keep thinking about that dog.  About how he stayed by that soldiers side, through three months in a coma.  Through numerous surgeries, through all his rehabilitation.  God had a plan for that soldier, for that dog.  As the years roll by, I often talk with Britton about God's plan for him.  I assure him that his life matters to God.  That there is indeed a master plan.  I don't know what he understands, but he listens patiently as I tearfully encourage him when he seems unable to endure his limitations any longer.

 As each day passes, as the clock ticks, God is planning, and plotting...  "The Lord shall not turn back until He has executed and accomplished the thoughts and intents of His mind."  (Jer. 30:24)
Our God is watching, and we will be safe in His dome.

"

A walk in the dark...can lead to wisdom, deliver us from fear and (as is intended) lead us closer to
God. "

It's been a dark month for sure.  Not just autism, but in some of my closest relationships.  A darker place than I have ever been.  It's not that it's not autism, everything in my life is affected by, related to, shaded by autism in some form or fashion.  Autism consumes a family, no matter how hard they try to "fake it."   As I've tried to climb out of this pit, dark and lonely, I keep praying, what is it that I could learn in the darkness?

I've never liked the dark, always as a child I slept with the light on, I don't mean a night light, I mean the lights blaring.  I was pretty much a "scaredy cat" of most things.  Funny how being afraid of things, sure doesn't keep them from happening to you.

 I recently read this quote, "Turning into darkness, instead of away from it, is the cure for a lot of what ails me.  Because I have a deep need to be in control of things, to know where I am going, to be sure of my destination, to get there efficiently, to have all the provisions I need, to do it all without help--and you can't do any of that in the dark."  There you have it, there in lies my struggle.

What can be done in the dark?  I keep thinking of Joseph (yep the one from the bible)  in the pit.  His own brothers put him there.  I can't imagine the shock and despair he felt.  The betrayal alone was enough to destroy any possible hope he had for the future.  But he didn't go there.  He got out of that pit with a "door prize" so to speak.  He now knew who his enemies were.  He may not have been innocent anymore, but he was a whole lot smarter.  The dark taught him a thing or two about trust.  He will no longer skirt the edge of the pit without concern.  Chances are, he'll stay a fair distance just to be sure.  Since most of us, know the rest of the story, even that didn't keep him out of another place of darkness, a prison.  Another dark place he was thrown into, because of someone's lies and sin.

Those of us who have children with autism have spent more than our far share of time in darkness... from the moment of our child's first seizure, or the moment we realized they would never talk again.  Each one of us,  has that defining moment.
Because autism wasn't known during the early 90's, mine was reading some medical cases and finding a similar case and reading, Prognosis: guarded.  I'd say, the prognosis for my entire family has been "GUARDED" ever since.

I so often wonder what my Britton would say if he was given just one minute, or one hour to tell me everything he thinks and feels.  Would he be angry?  Would he be sad, would he tell me that autism has his mind in a place of darkness?  sighhhh  I can't go there.  He smiles the most beautiful smile all the time.  He laughs for no reason that I know of.  He is kind, and gentle.  Recently his dad was super sick with a virus, and he walked up to him, put both hands on the sides of his dad's face and closed his eyes.  He looked very much to be praying for his dad.  I'm choosing that.  Because the dark choice is too close to the edge of the pit.

I like to believe that I traded in my loss of innocence for integrity.  That I can no longer be quiet about the REAL cause of autism, and I first earned the right to say it in an emergency room at 2:30 in the morning.  My son was completely blue, even his nails beds, and I had done rescue breathing on him for about 15-20 minutes all the way to the hospital.  Talk about a dark place.  When God was dealing with the children of Israel and their sin, I found this interesting scripture...“And Moses went to the thick darkness where God was, but the people worshiped from afar.”  It fascinated me that God was in the darkness.  But did you notice that the people worshiped from afar?  It's sort of like life with autism, we MUST stay close to God or we will not survive, often we meet him in the dark places of the soul.  But other people seem to have the choice to worship God from "afar."  Far away will never do in a life with autism, we live right up next to the pit, and sliding over is only one tiny hairs width from crashing to the bottom.  

It seems that there are times in the darkness that our pain becomes so unbearable, we are willing to do anything, go anywhere, seek ANYONE to end the agony.  For me, that anyone, is God.  How I end up in a dark place is of course circumstances.  My son's health takes a nose dive, and he's in pain that I have no way to treat.  I watch him suffer and I cannot endure the helplessness. Doctors rarely ever know what to do.   I can't pay his medical bills, or if I do, I can't pay anything else.  Before long, it's dark all around me.  I'm begging God to make an exception, just for me and my son.  Bend His rules, or bless my half heartedness.  One thing I am sure of, God does not deal.  It's just that simple.  If you're a gambler, don't bet too much on changing God's mind.  It's an extremely rare occurrence.  IF it does indeed occur at all.  
We can stay there in the darkness, far too long if we let our eyes adjust and become comfortable.  A season of darkness is a ripe learning place, a lifetime of darkness  is a grave.  We forget that God use to comfort us, that our divine encounters are very real.  We forget in the dark, what we knew was true in the light!   After a while the dark place breeds hopelessness, and we feel too buried in our present state to feel any hope in our promised future.  

Don't get me wrong, there is no more solid concept in scripture than God's children crying for His help, and Him coming to their rescue.  He always hears our cries for help, whether in the dark or in the light.  I have often cried out to him from the darkness, and been surprised to have him answer right beside me.  NEVER EVER, are we in the dark alone unless we ask Him to leave us.  Even then I know that He is only one desperate plea away.  Darkness has taught me to trust in His presence.  To take steps when I am afraid it is a pit.  To jump if He says I should, to leap into the arms of a very trustworthy God. 

 "If smooth living, invariably, eventually makes for sloppy spirituality" then I guess that's not for me.  I've never had smooth living, autism is never been an easy road. 

 I think I'll take that as an invitation..."Your God requires the honor of your presence at the foot of the cross..." I usually have to make a trip through the dark to get there.  You too?  Well then, let's hold hands and go together.  The dark is so much less scary when you know you're not alone.  

Britton loves to be up high.  He loves to balance on the edge.  I personally
hate heights!

"Human life has always lived on the edge of a precipice. Human culture has always had to exist under the shadow of something infinitely more important than itself."

The edge of Waimea Canyon, looking down...

Life on the edge!   Right on the edge of a deep, dark, abyss.  As long as I'm on the edge, just looking down, I'm safe.  Everything is good...til it's not.  I live in a world of smoke and mirrors.  A world of pretense.  "How are you?  How is Britton?"  "Oh, he's good, we're good."  Smoke, mirrors, cause did you really want to know the answer?  Every once in a blue moon, some poor person asks me how he's doing, and I've had way too much reality that day, and I just spill it all right out!  "He can't talk, he has no reason to get up in the mornings, and his OCD has over taken all our lives!"  Then I just walk away.  Yikks!  I know you didn't want to know that.

We own a business, and try to function on very little sleep.  We are constantly worrying if he's sick again, how sick this time?  Will we have to close our doors and take him to the hospital?  We do a mediocre job of business often times.  We KNOW this. We don't have enough staff meetings, we don't attend enough continuing education.... there is so much that we would do differently if we had one second to think of something besides his health, his education, autism autism autism! We do however, offer a gift to patients that few clinics do.  We care!  We care, and we will do almost anything we can possibly do to help you get well.  We will research, we will take the time, we will listen.  "No matter how we feel, (or what we've just been through) We get up, we dress up, we show up and we never give up."  Some patients really need someone who will do that.  So many doctors are thinking, "time is money, I have 7.5 minutes with you, hurry hurry hurry."  Inspite of popular belief that doctors are all rich, most are just hard working caregivers trying to navigate a cobweb of a system that is constantly changing, cause if they don't, they can't pay their rent.  True, most are closed minded, but there are a few, who step out and do more good than all the rest combined.  I'll just be grateful for those.

I know it's true that we are living many people's nightmares.  There is so very little understanding for families in our situation.  We have this beautiful son, that was born with curly blonde hair and big blue eyes.  He talked nonstop super early, and we were sure he was a genius!  Then I got his MMR.  There was no going back from there.  Less than 12 hours later he was in a seizure, face all blue and I'm doing rescue breathing all the way to the Emergency Room.  One choice, and just like that our world tilted.

I've gotten a little lethargic the last few years.  I've not had enough near death experiences for me to remember I'm still on the edge of that big black abyss.  It's giant mouth ready to swallow my son, my whole family right up, when I least expect it.

A few fridays ago, Britton began to throw up.  I thought, oh goodness he's got that awful virus everyone has had.  I put him in bed.  I gave him fluids, I sat with him and tried to make him feel better.  There was so much vomiting that I convinced him to lay in the bath tub while I washed some of the smell and debris down the drain.  In a matter of minutes his face turned completely blue, eyes rolled back in his head and there was a circle of black around them.  I know I blinked at least twice before the reality hit me.  My husband came up the stairs, took one look and said, "Teresa, dial 911.)  I ran down, and called.  While the phone was ringing I wrote on facebook, some sort of incoherent post begging for prayer.
When the operator asked me what's your emergency, I actually said, "I think my son is dying."  I honestly didn't know what else to say.  The paramedics were slow in coming.  It will forever be burned in my mind, watching Randy pick up his 150lb son out of the bath, and carry him to the bed.  He said, "he should be dressed when they get here."  He put all his clothes on him, while he was totally unconscious, wiping blood off his face, confused and never knowing if this is the last time we will see him alive.  The paramedics were like, "a seizure, not such a big deal."  Then they looked at him, took his blood pressure, and immediately radioed, "transporting, we have an emergency."
I kept wondering if we seemed too calm to them?  We weren't really calm, we were battle weary.  We know that there is nothing we can do except pray.  We know that doctors probably won't know what to do.  We just use them for their IV fluids, and their diagnostic equipment.  sighhhhhhhh  But they can save his life in this scenario, so I am so grateful for them.

Trouble cannot last forever. "For his anger endureth but a moment; in his favour is life: weeping may endure for a night, but joy cometh in the morning." Psalms 30:5

This morning when Britton woke up and smiled a big smile at me, my heart melted.  The innocence of it just broke me.  I felt so tainted, so old.  He was in his own bed, in his own clothes.  He doesn't seem to remember how he got there.  The night before seems to be washed away by the hours of sleep.  The vomiting, seizures, the spitting up blood, all of it just a bad dream.  It must be, he's in his bed, but all the needle pricks, the bruises, the sore tongue, the broken foot... that was a nightmare.  But he just smiles and jumps up like all is right with the world.  I stop him, and force him to let me hug him.  I am so grateful he's alive.  He really knows no other life.
I hope you don't know this, but when you have a grand mal seizure, your face turns completely blue, your eyes roll back in your head... you mimic death.  Most parents have never seen anyone in this condition, and God forbid, not their child.  I'm seriously glad that's true, but it's a lonely world of "knowing the possibilities."  Maybe in some ways it's a gift...I'm far less likely to forget how much I love my son.  I expect the next few months it's going to take way more stimming, humming, OCD trips to the bathroom, and flashing lawyers from the probate court, (that's a fun story) before I'm agitated.  I glimpsed life without him for 24 hours, (again) I don't want to face that.

It's hard, especially at times when I am watching him struggle with more pain, and more illness, not to want to put the blame where it belongs.  I am sad, and I am angry.  I'm angry that people want to placate me, and pat me on the back and say things like, "I know you just want someone to blame."  Yes, I guess I do.   If it weren't so obvious what happened to him, it might be different.  When I think back over our first visit to the emergency room, and how they just ignored the fact that he had been vaccinated that day.  How we searched and searched to find something else, and we just kept coming back to the obvious.  We would ask again and again if it wasn't possible that the vaccine that day could be the cause.  They always just ignored it, like it was ridiculous.  He was diagnosed with a terminal illness, metachromatic leucodystrophy (say that three times fast)  cause ya know, you'd rather tell a parent that their child has about a year to live, than admit it was a vaccine.  We were, after all,  some of the first families with a child that this happened to, no one even considered the word Autism, it was 1 in 100,000 in 1990.  Hard to believe isn't it?  Now that's it's 1 in 54 boys, you gotta admit something sure changed, and I don't think it was human genome.

"Pain insists upon being attended to. God whispers to us in our pleasures, speaks in our consciences, but shouts in our pains. It is his megaphone to rouse a deaf world." - The Problem of Pain

Britton insisted on laying on the edge of this  cliff,
it's a two mile drop inches from his head.

But I've decided not to go off on that tangent this blog.  Right now I'm just so grateful that I was home with my son that night.  That Randy walked in the door the minute it all went out of control.  That he really recovered better than I can imagine.  That his break on his foot seems to be healing faster than anyone can believe.  That above all, God was with us, and cares about all of it.  I have a giant group of prayer warriors that immediately bombarded heaven in a call for help.

"Grief is great. Only you and I in this land know that yet. Let us be good to one another."-Aslan

The autism world so understands each other that we are certainly as close as soldiers in a long, awful battle.  God bless everyone of you, and you can always count on my prayers.  I learned how to battle, and I learned how to pray.  I have learned how to beseech the savior for an audience, and I have learned to believe that my prayers have been heard.  My favorite scripture is II Corinthians 1:3-5, ³ Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort,⁴ who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God. ⁵ For just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ.

But all of this could be avoided if I would only refuse to love.  Love is the most painful of emotions, and yet the most exhilarating as well.  C.S. Lewis is my all time favorite author, I'm sure you figured that out from the quotes.  His quote on love is medicine for the soul, and reminds me, that love is not an option, it's as important as air.  

"To love at all is to be vulnerable.  Love anything and your heart will be wrung and possibly broken.  If you want to make sure of keeping it intact you must give it to no one, not even an animal.  Wrap it carefully round with hobbies and little luxuries; avoid all entanglements.  Lock it up safe n the casket or coffin of your selfishness.  But that casket, safe, dark, motionless, airless, it will change.  It will not be broken; it will become unbreakable, impenetrable, irredeemable.  To love is to be vulnerable."

So what does it take to break you?  What thing makes you throw up your hands and say, "that's it!  I've had enough?"  Why do I ask?  Well I continue to be stunned by what the final straw is for some people.  People who need a bigger house, or ones who buy a dream home and are now stressed to the max cause they can't sell the old one.  People whose kids need speech therapy because their child says "wabbit" instead of rabbit.  They are crushed and desperate.  It's hard for me in those moments of sharing.  I try hard to just say nothing, it's best if I keep my life to myself.  In my worst moments of self pity, I think of living in Cambodia, or the tent cities in India.  They would be appalled at what sends me to the edge, right?  So please know, I'm just attempting some perspective for all those who really do want to understand autism, or perhaps who want to understand me.  (God bless both of you?)  LOL

"The worst distance between two people is misunderstanding."

I suppose it's sort of like pain... you get use to it after a while, and then it takes more and more to make you flinch or cry out.  So many children with autism hardly ever complain about the pain they are in.  By the time they are desperate for you to understand that they are in unbearable pain, it's some condition that is way past serious.  For my son it has been Crohns, something that most adults I talk to go to the ER and get morphine for.  Or maybe it's the strep infection that has attacked his brain, and all the antibiotics in the world just won't kill it.   That, THAT sends me pretty close to the edge.  Wondering if he's in unbearable pain, and I don't know it.  Wondering if the last time he bit me or shoved me, if he just was at the edge of endurance himself?  I just want to help him, but how do I know how?  There is NO ONE that can help me figure it out... no one on this earth.

"I was never insane except upon occasions, when my heart was touched."  Edgar Allan Poe

So back to it, what is it for you?  Is it losing your job?  Breaking up with your girlfriend, mean boss that treats you rotten?  What's it take to push you to the edge?  The reason I ask, well I think that sometimes I am just a little shocked by what pushes someone right over the precipice.  It's a miserable marriage, or maybe being behind on your bills, kids that never call, needing to move, maybe all of it at once?
Don't get me wrong, I'm not saying those things aren't stressful, but honestly I'm hard pressed to be sent to the edge by such things. Situations that actually have choices and possible solutions.  I use to be that person, I use to have the luxury of being so, well let's be honest, so spoiled.  The reason, well I live in a house with a beautiful young man who is tortured by autism.  He spent his 23rd birthday hardly aware that it came and went.
Watching autism, participating in the care, and guidance, medical choices and schooling and just life of someone you love, who cannot whisper one word of their frustration and pain... well it's more than life altering.  It's life shattering, how can it be otherwise?

                           "You are so brave and quiet, I forgot you were suffering."  Ernest Hemingway

I'm a control freak by nature.  It's how I was born and how I was raised.  To attempt (however futile) to control my own future, my own destiny.  It's hard not to laugh even as I think about it.
About 26 years ago, I was a very different person.  I was the boss to 34 employees.  I hired and fired, and was confident of my decisions.  I worked out, had low body fat, my house was clean, I cooked good food, and considered myself a woman of excellence.  A typical Type A personality.  But then there was autism.  Over the years so much has changed.  I HAD to let go of all that.  I HAD to realize that the life I had was what I now consider a life of luxury.  I am not attempting to offend anyone, I am attempting to give you a different perspective.  You got sharp edges?  You're a control freak, Autism is here to help sand you down.  During that sanding, you will need to set aside all the things that don't really matter.  All the things that use to mean so much to you, most will sand off rather easily.  Now, they are probably more a hindrance to your new life, than a help.  There is no way to share the lessons you learn in the valley of the shadow.  It's like battle scars, those are yours alone, along with the lessons learned and the muscles built.

"You, he said, are a terribly real thing, in a terribly false world, and that, I believe, is why you are in such pain." 

After 23 years of autism, of struggle, of pain, even I am stunned by how changed I am.  I use to be someone else.  A person who thought she had it mostly figured out.  A person who was a director, a professional.  Heck, I took the Dale Carnegie Course.  LOL  But I have to be honest, I'm not that person anymore.  That person is long gone in the sanding process.  Laying in the sawdust of 23 years of sanding is most of who I use to be, who I thought was the best person I could be.  I suppose I shouldn't laugh, but as I do tears come in my eyes.  I do grieve the loss of who I was, who I could've been on occasion.  Then I remember, God will give us beauty for ashes.  Perhaps hope for sawdust?  I have often realized, I would not even be friends with that woman I use to be.  Ouch!


I don't know why it gets to me.  God wanted me to be the best me.  What HE values, more than what I, value.  He didn't want me to retain pride, envy, selfishness.  He wants to sand that off of each of us,  I apparently require a great deal of sanding.  So many times I feel sore and raw.  This past few months have been long and difficult.  ( I'd believe it if I saw an electric sander in motion.)   My son has had many ups and downs.  He has struggled with illness, with drug side effects, with a new caregiver, with his parents working too much.  Finding a new school after leaving the one he had gone to for 7 years.  New beginnings, so very difficult for those with autism.  People say such nice things to me.  Things like, 'you handle it all so well.  You are so brave!  I could never do what you do."  I so appreciate your kindness, but you are wrong.  I am neither brave nor strong.  I am a mother, who will do whatever is necessary to help her child.  I am, no different than most of you.

Somedays I wonder if I'm just pretending to be handling it all.  Pretending I'm the same person I was before autism.  That I'm NOT a ghost of my former self.
When the holidays come and life with autism just gets that much harder as there are more and more "NORMAL expectations" placed on those with autism... I catch myself wondering if  I had died in the ER more than 20 years ago, while I was doing CPR on my son...am I pretending that I didn't lay down beside my son's convulsing body and just give up.  Yep, pretending, I'm good at that.  I pretend I'm just fine, I pretend I can manage, I pretend that I've got it under control.  I pretend that when I have finally, gut wrenchingly asked someone for help, and they basically slough me off that I'm okay.  Talk about smoke and mirrors.  But somedays I just don't have the energy to pretend anymore.  I'd like to add a giant disclaimer here. ( IF you catch me on one of the days that I forget to pretend, forgive me.  God will give me the strength to pick up my mask before long and we can both pretend I'm okay again. )

"You are free to choose, but you are not free of the consequence of your choice."

  But when I do stop pretending.  No one wants to hear it, even I'm not sure you should hear it.  Honestly, it's not whether you should hear it, it's whether you can be trusted to hear it.   You will think you know something about autism when you don't.  You will think that it's my fault, my husband's fault.  Some ones, anyones elses fault.  Ya know why?  Cause you need someone to blame as much as I do.  You need the Pharmaceutical Industry to be saints.  To be what they were in the beginning when they tried to help people.  Instead of the money whores, and lying drug dealers they have become.  Yep I know that sounds really harsh.   (I'm pretty sure I just said that right out loud.  I'm sure some will be offended.  For those of you who are, I invite you to spend a mere 24 hours with my son, and then you can voice an opinion, having imagined your own child in my sons place.  Frightening isn't it?.)
The companies that place our children on a conveyor belt to death without even wincing.  (I suppose we are "decreasing the surplus population."  Ebnezer Scrooge")
Well here's a bitter piece of the truth, I don't want that to be true.  In spite of the propaganda of the BIG PHARM, parents of kids with autism wish there was a different answer.  Think about it!  It would be so much easier if we had any other answer. Genetics, some hated toxin, even an industrial poison, anything but vaccines.  But unfortunately two plus two continues to equal four, and so here we are.  Struggling and struggling with autism and all the other illnesses that go with it.
Oh didn't you know?  It's not just AUTISM, it's Crohns Disease, and irritable bowel, and Strep infections that never go away, and yeast that won't ever die, terrifying seizures and various other fungus that lodge in our kids guts.  Apparently all kinds of parasites seem to make their home in their intestines, and the list goes on and on.
The aggression and violence that takes place almost always is related to pain these children, and now young adults endure every moment of their lives.  The Nausea of all the meds to help with all the inflammation that causes their intestines to malfunction.  But aggression and violence is just part of the world of most of us.  Most of us have been biten, pinched, punched, shoved, spit on, vomited on, cleaned up more feces than a kennel owner and lost more sleep than most of you reading this blog would be able to believe and maybe not even survive.  I know you're thinking, boy is she laying it out there...  You would be right.  I am so sad, over the struggle of autism, over my friends that I love so much whose children suffer so much from autism.   We have become an army of families.  Families who battle the same enemy.  Fighting for our childrens lives, fighting for the truth to be exposed... to someday save your child, and just praying for any amount of recovery that we can gain.

"Friendship is born at that moment when one person says to another:  what, you too?  I thought I was the only one."  C.S. Lewis

I really did think, hope, pray that as he got older life would get easier.  I hoped.  It hasn't seemed to work out that way.  He is at least as demanding, and certainly big enough to carry out any wants or needs that he is not going to do without.  sighhhhhh  Autism is so hard when their little, and so hard when their big.  At least when their little people SEE a small child and they have some compassion.  When they are big, people see a grown up who is misbehaving, and scary!
 There is no condemnation there, really there isn't.  I was the same way.  EXACTLY THE SAME.  I have no right being angry at anyone who runs from my son, I WOULD HAVE RUN TOO!  I am not excusing the ignorance, I'm just acknowledging that I was ignorant too.  No condemnation, really.

So, as I finish this blog, that I pray at best gives you more understanding, or at worst leaves you shaking your head ...
A very unexpected thing broke me this past month..  We were in a mess of need, and  had no way to pay the gigantic bills that autism creates.  The facility he attends asked us to pull him out.  His caregiver quit, and I lost all my experienced employees over the course of a few months.  We did what we know to do, we cried out to God.  In a matter of a few weeks, someone who did not know our need, stepped up and asked to help us.  (Yep they asked us!  They still do not know that it was God intervening, and using them)  Crazy as it sounds, it took several miracles for that help to be available to us.  Those I expected to help us, did not.  People I never even thought of, offered to be God's hand.  I could do nothing but send thank you cards.
What is a card when you have altered the future of an entire families life?  How grateful I am for those of you, who just reach out to me or my family in such unexpected ways.  Those willing to excuse our struggle, and never judge.  Who are truly sorry for our difficulties, and are grateful they are not battling it themselves.  Those of you with compassion and love towards my son.  God's love for us, it broke me in a very different way.  I am one more time humbled by God's love and care for us.  YOU, who knew the need and prayed, you who did what you could to help the miracles happen, you who stood in awe as God delivered us one more time....
YOU ALL,  were Christmas to me.  I cannot repay your kindnesses, but I can ask God to.
So as we end 2013,  I bow on my knees before the cross, and one more time I say, "God Bless us, everyone."

"Some believe that it is only great power that can hold evil in check.  But that is not what I have found.  I have found that it is the small everyday deeds of ordinary folk that keep the darkness at bay.  Small acts of kindness and love."  

How safe are you?

Friday, Britton was out of school.  He's an early riser, and it was only 75 degrees, so we decided to go for a bike ride.  It was a really awesome ride, and we were enjoying ourselves.  I noticed that lots of people walking and riding were smiling and waving at us.  I can't really see what he's doing back there, but I figured he must have a huge smile on his face.  He was stimming with his left hand which looks very much like waving.  Hello fellow walkers and riders.  :)

I had a big plan for all the errands we were going to, all running through my head as we rode.
I was praying that Britton was up for it.  That we wouldn't go anywhere he couldn't handle.  That no where would be super crowded, and that I'd be able to handle whatever happened.  As I was riding along the bayou, I noticed this big white bird.  Now, I don't really know what it is, but I always see it and wonder.  It's a REALLY BIG bird.  I think it's some kind of bird that you normally see at the beach.  As that thought crossed my mind, I begin to hear a still small voice.

"Most these birds live at the ocean.  He'll never taste fresh fish, he'll never smell the ocean breeze, he will always eat bugs and catfish."  I thought, So why does he stay?  The answer was obvious, because he's safe, that's why.  No predators along the sewage filled bayou.

I was so stunned by the thoughts going through my head.  It took me a minute or two, but then I got the connection.  I struggle so hard with taking Britton into the public.  I never know what's going to happen, it's always like Russian Roulette.  Will he stay with me, will he run off?  Will people get angry, will they stare nonstop?  On and on the fearful questions pummel my subconscious.
But I realize, that I have a choice, just like the bird.  I can stay by the bayou... eating bugs, or I can take a huge giant leap of faith every single day, and smell the ocean breeze.  So today, we went to Costco, then to the car wash, then to the bank, and ate lunch at Willie's Icehouse.  Some people really rather not think about the disabled, they are really bothered by my "putting us out there" for them to have to see.  Others however are inspired and grateful and kind.  There will always be both kinds of people, there will always be those who Britton inspires, and those who cringe and stare.  But because I really want him to smell the ocean, to eat fresh fish, and soar on the ocean breeze.  I'll just keep praying for God to protect us from the "predators" that we will inevitably encounter.  There are so few of us willing to step out there with our disability for the world to "appraise."  I have to say that I am stunned by how rude and uneducated so many people are to the disabled.  For those of you who wonder, you shouldn't stare.  BUT... you should acknowledge.  If you are afraid to look, and you quickly look away, it can seem like  you're either disgusted or freaked out.  So, do what you do with ANY stranger.  Just look the person in the eyes, and smile.  It would okay to even say hello.  Britton has stunned me time and again, by speaking back and replyng, "Hi."  I do find that if I can convince him to wear his t-shirt that says, "Autistic Genius" that people are less fearful.  The fear of the unknown seems to be a huge part of it.  For Britton, he looks so normal, lots of people are just trying to figure out if he's "normal" or he's not?

I consider today a success.  We went, we saw lots of folks and we didn't cause anyone to run in fear.
It was a day of soaring on the currents, a day of eating only fresh fish.  I'm not always brave, some days I take him through the drive thru cause it's really busy inside and I'm not up for it.  Yep on those days we might as well eat bugs.  It can be after a difficult situation in the public, and I cower sometimes for weeks.  I'm not alone, many moms and dads have never taken their autistic children to the movies, grocery shopping or out to eat.  Some of them have spent their lives between home and school, and a school bus.  That's it.  More and more schools are refusing to take children out as well.  Insurance premiums are just too high.  So, if you've never seen someone with autism out shopping, don't be surprised.  Even though they are 1 in 54, they are pretty much sitting beside a sewage filled bayou, eating bugs and bottom feeders. (Mostly hiding in their homes, or schools)  It's a scary world out there.  I'll never see that bird again and think or feel the same way.  I'll hope he eventually disappears and I'll believe he finally woke up one day and decided that really living is worth far more than being safe.  What do you think?  Should we play it safe, just eat the mosquitoes and flies, safely scoop up the catfish out of the sewage filled water?  Or should we risk it all, by getting on a plane once a year and flying across an ocean to paradise?  Should we gamble that people will be kind, and even if autism has a melt down, it will be worth the risk?  You've seen my pictures, you know I'm a gambler at heart.  So here's to eating fresh fish, chasing the sun across the water, and here's to that white bird.  May he take flight.

Maybe in the next life it won't matter so much.  But here, and now... it's hard to imagine that it won't.  I don't seem to be able to help myself wondering why God intervenes sometimes, and seems to turn a deaf ear other times.  My soul feels bruised, mangled, worn.  I cry out day after day and wonder what I have done for God to ignore me.  So many families get reprieve.  At least enough healing to get language, have some hope, see a possible future.  Others, like us, just aren't as deserving, or needy, or perhaps God loves them more?  I know, I shouldn't go there, but the truth is, we all do.  When things get super hard, I begin to wonder why God ignores me.  I wonder what did I do this time.  He obviously owes me nothing, but my son could not have committed any sins, since this disease began to ravage him before he was even two.  I know it's not rational, I know it does not fit with God's word... it is just what I FEEL.  When I get this tired, it's hard to deal with what I know versus what I feel.  What I feel just comes boiling to the surface like some nasty oil well about to erupt.  It's not good.  I decided to be extremely transparent.  My hope is that if you are battling something equally difficult, that you will feel comforted to know you are not alone in your depravity.  No, no, not depravity.  Let's go with despair.  I had a friend tell me that you have to be prepared for the consequences of real honesty.  I have no idea if I'm prepared for it, seems insignificant in this battle.  I personally think honesty saves me.   If tragedy really exposes who we are, I must tell you I am the most depraved of all men.  I cry incessantly.  I beg God, I ask God, and eventually I blame God for not caring enough.  Again, all NOT GOOD!
There is a tiny light of good news in all this... it's that God listens and tolerates my despair.  He always leads me back to His word and attempts to encourage me.  I just have days where I do not feel it will be possible for me to hang on any longer.  How dare I blame God, for what I know God clearly opposes? It's a good question.  God definitely operates on a different timetable than impatient human beings expect.  From Abraham to Moses, David and so many others.  I learn that God moves in ways I would neither predict nor desire.  A record of God's faithfulness in the past combines with hope in a better future for one end:  TO EQUIP ME FOR TODAY!  Right now is my most important moment in this journey, because today is the only time when I have any power.

I watch my very brave husband battle this autism monster.  He seriously does it without many tears, with his face set like stone.  He is determined to eradicate this monster from his only son.  To somehow liberate his family from this living death of a life.  He just marches on, without complaint, with the most incredible resolve.  I've never known a better man.  He is God's man.  I know that God must be so proud of him, I am another story.  Yes I am that woman who feels sorry for Job's wife.  LOL  I recently went back to research to be sure he didn't ditch her for a new wife when God restored everything.  Sure enough, there she was.  Enjoying the fruits of her husband's faith.  That gives me some hope. (feel free to laugh)

This latest twist of autism fate I didn't see coming.  I knew something was wrong back in early Spring, but we battled away, the same way we always had.  I didn't know I was NOT HELPING.  Now, that he has been ravaged by this strep virus/bacteria that I didn't even know was there.  Just one more battle his body is attempting to fight.  I'm just praying his body is up for another assault.  He isn't able to sleep much because of it.  They say the strep inflams the brain and causes all kinds of awful things.  He hallucinates, he stares at things for long periods of time.  He cries out.  He has been attempting to reach over and close my eyes for about a month.  (It feels like he might poke my eyes out) So as long as I wear sunglasses, (even in the house) he's okay with it.  If I take them off, he will come and put them back on me, or incessantly try to put his hands over my eyelids.  I know, who knew autism could get any weirder?

When he finally crashed in exhaustion somewhere around 12:30am, I was looking at him, praying for him.  Thinking, if you had cancer, if you had some awful disease that people understood they would pray for you more.  They would feel concern for you and your family.  But, no, because this disease is created by a greedy pharmaceutical industry, with the backing of the whole government.  They spend millions of dollars on their propaganda, saying that autism is caused by any and everything.  (e.g. refrigerator moms, Genetics, what the mom ate during pregnancy, what the mom DID during pregnancy.  What the mom was exposed to during pregnancy.  Starting to see a pattern?)  A researcher that was recently interviewed said that "autism has been proven to be genetic."  I threw my rubbber glove at the television.  (THAT is a bald face lie)  It has been speculated.  But if you ever thought it through for even a second you'd realize that 1 in 54 children can't be a genetic problem.  We've never had a GENETIC pandemic.  There is no such thing.  They use the genetic thing because they want you to blame the parents.  THEN, YOU FEEL SAFE!  Get it?  That way you don't worry about those pesky autism rumors and vaccines.  You just slap your baby on the vaccine conveyor belt and not let those silly autism parents worry you.  We all know it's their faults and they're just looking for someone to blame.  Yeah, I wish.

I write a lot.  Journals, blogs, just all kinds of things.  I write poetry.  Yeah, I know hard to believe.  But I often find things I've written, in books, cries of lament penciled in my bible, in spirals, just laying around.  I recently found this one.  I was stunned by how I've felt the same for years and years.  As each new battle rages... it's really the same war isn't it?  But as I think of the battle that raged when I wrote this, I remember that I got through that battle, and what I felt and believed was changed by it.  Remembering my relationship with God takes effort and intention.  I cannot pull out a video and watch the history and growth of my relationship with God, there are no photo albums of living in faith.  Only God sees my heart, and my battle scars.  This is our relationship that is forever under assault.  By the same token, the "monster" is His enemy too.  After all, "if God be for us, who can be against us?"  Let's slay this monster and burn the debris.

My precious child is held a captive..

Imprisoned by a ravaging disease

The torture is constant and endless

And only God can set my boy free.

So I pick up my sword each morning,

I hold it up all through the night.

This monster rips and destroys

I must battle him, and relentlessly fight.

Somedays I sense the enemy weaken,

Somedays he drops back in retreat.

But most days he laughs at my efforts,

Knocking me back in defeat.

Is there no place to end this fighting?

The vigil I keep is ever long.

The weapons I wield are so heavy.

But deep in my heart there is a song--

It’s true it’s my child this time,

As you watch from your life of ease.

But the monster is not too selective.

It’s on your child he’s wanting to feed.

So I strap on my helmet each morning.

I lift my shield every single day.

I pray that someone will hear me

That God will show me the way.  

When the battle overwhelms and destroys

On days that I can’t hear the song.

I’m pleading for you to wake up.

To open your eyes and believe what’s wrong.,

It’s an army of families marching,

I think I heard the sound of their cries.

Forming a wall against the monster,

A fortress against the world’s lies.

Listen I’m sure you’ll hear it.

It’s a shout, a call to fight.

No longer will we suffer in silence.

No longer will we hide from the light.

The monster has taken some serious blows,

His wounds are swelling and sore.

His companions try desperately to shift your gaze.

But the pain is just too hard to ignore.

They pretend he isn’t really a monster.

They pretend they’ve taken his claws.

But they’ve lied as they’ve stolen our children.

Their greed is directing their cause.

Some children have crawled to the surface.

Some children are now running free.

But my child still battles the darkness.

Silenced by this ravaging disease.

So mothers don’t give up your vigil.

Don’t lower your shields to rest.

The monster is licking his wounds just now,

But he’s seeking your family next.

Oh God of all poisoned children!

Please stand and fight beside me now.

The monster continues to ravage and chew,

We must stop him, but we need to know how.

Hold me tight as I’m keeping watch,

Keep me awake when the battle grows long.

Lift my arms when they fall in weakness,

But most important let me hear your song.

Help me sing about hope and about longing.

Help me believe that he can some day be free.

Help me love in this black, evil battle.

Help me forgive those who aren’t willing to see.

I need to sing out loud and forever!

I need to be heard over the lying throng!

Please help me sing loud so my child can hear...

Please empower me as I sing your song.

Father of light and Father of kindness.

My hope and strength in this dark, foul place.

My eyes have have adjusted to the darkness,

My weary limbs seem to keep up the pace.

A crack of light has pierced this prison.

Showing truth everywhere it shines.

As the crack grows larger and larger

I know that victory will someday be mine.

One more time I lift up my shield,

One more time I look in Britton’s face.

The hope and trust that shines in his eyes.

Is enough, to make me pick up the pace.

Lift your shield we have monsters to slay!

Somedays you sure don't see it coming.  I had struggled through the morning, which is what usually happens.  Britton wakes up, runs down the stairs, and wakes us all up before the alarm goes off.  Man I'm tired.  It has been over a year now that he hasn't slept past 5, usually it's more like 4:30am.  Yes that includes Saturday and Sunday, autism doesn't care what day it is.

But today as I struggled, we did our usual routine.  Once out the door, we head to do some Mom and Britton time.  Sometimes we grocery shop, sometimes we walk at the park.  We spend about an hour and half together before I head to the school.  Today we stopped by Walgreens, because it is one of his favorite bathrooms.  Yep, I said bathrooms.  Britton is a bathroom connoisseur if there is such a thing.  He prefers them clean, and secluded.  That way he has it all to himself, and can use each stall, and each urinal separately with no interference.  It makes him happy, and calm.  Walgreens is always kind to us, and I always buy things.  He picks out snacks, and he opens the drink refridge repeatedly begging for a coke.  He rarely gets coke, and now that I know he can, he only gets a coke if he SAYS COKE!  Which is rare, as a matter of fact until today he had only said it once.

We stood at the snack/refridgerator aisle and he went back and forth.  This feels like and hour, but it takes about 15-20 minutes.  I rarely notice if anyone is watching, only if we get in their way.  Today there didn't seem to anyone in the store but us.  It was super early.  Britton blurted out "COKE!"  I was so stunned that I stopped what I was doing and hugged him and tears ran down my face and of course he did get a coke.  We took the coke, and all the things I buy, (e.g. light bulbs, dish soap, toilet bowl tablets) and went to check out.

The lady at the counter says to me, "You don't know how I look forward to when you come to the store."  I was busy watching Britton organize the gum and the candy at the check out.  He doesn't buy them, but he makes sure they are all in the right slots and neatly stacked.  I looked up and said, "Oh goodness, why is that?"  She says....

"When you come in here, I am always reminded of God's love for me."  Of course I was taken aback.  I said, "that's awesome, how do we do that?"  She said, "It's because you are so patient and kind.  Your love for your son radiates from you, to him.  No matter how difficult he is, you patiently redirect him, and help him do better.  So I know, that if there is a human on earth that can do that, that my heavenly Father will always do that for me.  He always whispers to me about you."

Well now, if that isn't some kind of morning I don't know what is.  It's only Wednesday and it's been a very hard week.  Britton is struggling with some physical ailment of which I can't seem to put a finger on.  (No surprise there)  So he is stimming and wild, and agitated.    My sons caregiver of nine years will be leaving us in less than 6 months.  I have no idea how to replace her.  The pressure, because I have to work more now...we have so many changes going on at work.  With Obamacare crashing down, we have so many overwhelming changes that don't even seem possible to make.  But you see, our clinic is not OUR clinic, it belongs to God.  Trying hard to remember that, and rest in my faith. Then there's all the employee changes as my office manager, (and daughter) heads off to Law School.  The grief I feel is overwhelming, because I know I will never see her.  (I know this because my oldest went to Medical School, and it's been ten long years and she is just NOW heading home, next month.  TEN YEARS!)  Not one birthday, very few holidays, every vacation, she missed it all... Now the 2nd daughter will miss it all for years to come.  sighhhh    God keeps reminding me, THERE ARE NO COINCIDENCES!  NONE, ZERO!  There's so much more, but you'd stop reading if I told it all to you.  :)

So here I am, standing in the Walgreens, crying like a baby.  Britton is stimming and jumping, and laughing.  The lady is saying, "I didn't mean to upset you.  I wanted you to know you are a blessing."
It's hard to believe that the struggle, the difficulties, the impossibilities of my life, matter.  You too?
Well I guess we never know what God has in mind.  We never know, who God is pointing us out to.
My mind shifts to Job, and I'm certain that he never had a clue that God had bragged about him.  Given the choice, none of us choose difficult situations.  But at that moment, the blessing that I felt come over me was worth it, at least for a moment.  I felt so loved, so bragged about... by God.  I can't imagine it.

I drove Britton to school, and he reached over and wiped a tear from my face and kissed me.  Then he grabbed his backpack and went hopping into school.  My God is an awesome God and He knows when we can't go any further without at least a word of encouragement.  This life, this horribly difficult life that we battle through, does matter.  If to no one else, it matters to God.  He watches, He brags about you and me.  He is apparently, at moments even proud of His Warrior families. So pick up your sword again, and "run quickly to the battle line" my friend.  God is watching, and he might just point you out to someone else.