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."