Blooming in the Fire

There was so much pain, so many tears... so much through the night in the ER. I left at one point and cried til I puked. It has been a scathing fiery trial all of this. I stood in that sterile bathroom crowded by a million germs, looked in the mirror at my swollen red eyes, and asked God to strengthen me for what was ahead. I took a breath of courage and walked back into the room, swallowing down a gigantic lump of fears and asked God to give me strength one more time.  

Britton was thrashing and crying and that is gut wrenching for a momma to watch. I held him and laid my head on his pillow my face next to his. I patted his cheek and refused to let him see any renegade tears. They used a spinal needle to inject into his shoulder joint some pain meds. He just stares, so solemn, so resigned, my stomach knotted tighter and I swallowed down the panic one more time. As I looked up I could see things from his perspective .  

Then I just felt those traitorous tears pouring down my face against my will. What a nightmare this is for him. It takes 8 people for conscious sedation. All around him, doing all kinds of things. It's like a busy subway station of activity. The doctor yanking and pulling hard because he's suppose to be asleep, but with max doses of two meds, he's still fighting them through so much pain. What to do, how can I help? Without conscious thought I decided to sing in a whisper. I know how crazy that sounds, right? But I sang, "You make me brave, you make me brave..." While I held his face and patted his cheek. The busy ER became very quiet, and got still. The presence of the Lord permeated the room, and everyone paused to breath it in. Britton slowly drifted off into the drug induced sleep needed. Then the spell was broken and the worker bees went back at it. They spent hours pulling and yanking, manipulating. They let Randy work on it for a while after they each took turns and were all worn out from each valiant attempt. They flipped him on his belly, and the battle began again. The swelling made it far more difficult. Bottles of drugs everywhere, doctors calling out for more drugs, one yanking another monitoring, momma just praying and not caring what anyone thinks, daddy holding both his feet, wishing he could do this for him. It felt like a Mash unit in a war zone. Welcome to the complications of autism. sighhhhhhhhh

In the middle of it, the nurse says to me. "You are a great mom!" But then her eyes filled up with guilt. I turned from what I was doing because I heard the Lord whisper, "Pay attention!" She said, "I have twins with autism. They are three. I have no patience for it. I am not the mother you are." A tear escaped and she wiped it away so no one in her professional life would see. The confession was left hanging as the battle intensified. Later I went to my car to get Britton's much loved quilt full of holes. She was sitting on the curb smoking, with the front of her scrubs soaked from tears. I stopped, and paused. I have no pride left because autism sanded that away years ago, I look down at her and confess, "You know, when he was three, I was nothing like I am now." She looked up and stared at me so intently. Like she was searching deep inside me for some hope. I told her how it's not possible to have the patience the understanding that you "learn in the valley of the shadow." That it is earned, won on the battle field of Love. That God would be faithful to teach her, to mold her into the mother her boys would need. Trusting Him would be how she could do this. Holding on to Him and reaching up to the heavens would give her the courage that was not her own. Then she let me pray with her, she let me console HER. It was a holy moment, I felt God all over us. She was very professional and hopped up because there was a job to do, and Britton's shoulder was still out. We tucked our secret alliance away, and we both went back to the battlefield. We pretended that we had not shared that still moment where God had paused a battle long enough to give aide to someone in pain. That precious moment, where a war hardened, old General reminded the fresh young private that she too will someday wear the battle scars of a thousand wars. She too, will someday pave the way for those young frightened warriors behind her, praying someone has an answer, looking to her for courage. I pray that I encouraged her to trust God. I pray that I gave her hope that the battle is far less intense, and not as bloody as it use to be.  
The reason? We now know our enemy, we are a huge army of battle torn families and we have better weapons. "For the weapons of our warfare are not carnal, but mighty through God to the pulling down of strongholds." The battle is so fierce, those on the front lines for endless years have pointed out the enemy over and over only to be told the enemy is YOU. But mom's know, daddy's know, doctors are beginning to know. The truth seeps up from the cesspool of deception, and is beginning to permeate even the hardest of hearts. We know the day our child was changed from what he was meant to be into... something else. We know the day we were convinced to let poison be injected into them. We KNOW our enemy. But that is not the most important lesson of this night.  
This night the lesson is, God does not, will NEVER waste our suffering. He will take us bleeding and bruised, and change us into someone stronger than humanly possible. Then He will instill courage into your heart and give you love so strong you will know it is from another world. Yes, even on the frontline, He shows up and says, "Use this moment, don't let this go to waste." How I love his voice.  

When the fierce battle ended and the beat up boy/man laid exhausted, with a bruised and bloody shoulder so swollen you aren't sure it's not something else growing under his skin. We all stepped back and breathed. He's laid out on the table, beaten, shoulder shredded and bleeding. However, the wicked battle was won for that day.  
Randy and I sat in the well worn plastic chairs, and held hands. Holding each other up, having fought one more time and won. Even we are surprised. The exhaustion is so deep at this point I laugh saying, "even my hair is tired." We both laughed with tired eyes so full of the pain watching our child suffer. The emotion swells and I started to cry because, well, because.

I hugged him and we just held each other. We wondered how in the world we have survived this long. Love is a powerful force. If I could step back and look with spiritual eyes, I believe this is what I would've seen. I felt God's spirit like a breath of wind, a blue swirl of smoke, wrap us, caress us, love us. I would see his spirit whisper to those who joined us in the battle that day say, "Notice, this battle weary family trusts God. Yes they are weary, but they are infused with my strength. They believe, and I am with them. That means, if YOU believe I will be with you too." The battle tried angels having seen so many of God's children through countless wars, would be caressing, and massaging Britton's head. Fingers doing circles on his temples as they blow the breath of heaven across his exhausted flesh. Still confused why God so loved this world and these broken humans.

As the early morning began to open it's heavy eyelids, and rear it's sleepy head from the earth's soft bed. Britton's bone-tired, and drained body lay gently breathing in some restoration. It was a strange for the emergency room to be so still. The doctor's shift was over, and she stopped by to make sure all was well before we left. She said, "I'd like to thank you for what you did for us tonight." Randy and I looked at each other and I raised my tired and questioning eyebrows and shrugged. She looked almost grief stricken as she poured out her life's work. "We see the dredge of society here. You work and you work and after awhile you forget the people are even human. The majority of people who come here are so entitled, so demanding. Sure you get to help some people. Someone goes into cardiac arrest, you bring them back. It's something. But most the time, we just patch up drug addicts and fight them over more drugs. Watch the elderly come to the ER in hopes that a family member will finally visit as they die of loneliness.  A baby dehydrated because the mom is too drunk to remember he needs fed more than once.  Tonight, you showed us the best of what humans can be. You actually gave an entire Emergency Room hope that there are still good people in the world." She said a lot more than that, but that was the jest of it. Randy and I were rendered speechless by the encounter. We had teased each other early in the night, before the battle got fierce. That coming to the ER was like going to Walmart, you never know what you're gonna see. The doctor's face squeezed with emotions, and she put her thumb and finger up to prevent tears. We didn't really know what to say to her. So, I reached over and patted her and told her how much we appreciated all she had done. How wonderful it is to have a doctor who listens and cares. That what she does matters even when no one notices, she makes a difference. She seemed choked with the never received appreciation. She turned to leave because she had a flood of emotions rising so fast she had to get to her car before they spilled out all over the harsh reality she works in.

Oh God, He is really something. He is always up to something you never imagine. Planning, moving, helping if only we will listen and be part of a much bigger plan than we can contemplate.

I have no idea how, or why we are going to have to have Britton's surgery in Philadelphia. I'm still astonished as I think of how all that came to be. An another autism mom who heard our story contacted another autism mom, and made sure I knew how she had fought this same battle. She reached out, she loved, she cared for a family just because she had battled the same monster. (God Bless you Val! God uses all our pain!)  
But after tonights battle, I'm believing that God has laid out a plan. That we are to obey and follow his lead, and "step quickly to the battle line." I laughed as I cried after the doctor left us standing there pretty much with nothing left to say. Stunned, amazed, at how God had taken so much horrific tragedy and done something incredible right in front of our reluctant eyes. Then shown it right to us, (a rare occurrence) while we blinked back astonished gratitude that He allowed us to see Him at work. 

He's just like that isn't he? One of my favorite scriptures is, "Blessed be the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God.… 2Corin 1:3 

That pretty much sums up last night.  It's good when you get to see beauty in the ashes.  When you're life has burned so out of control and you stand in the rubble and ask God why things have been allowed to go so far.  But like a flower growing up out of volcanic ash, it unfurls it's colorful face tilting up, seeking the light of the SON.  As I contemplated these things in my minds eye, I realized that the beauty, and resilence of this chosen flower cannot grow in any other soil.  

Luke 12:27

"Consider the lilies, how they grow: they neither toil nor spin; but I tell you, not even Solomon in all his glory clothed himself like one of these. 

The Sound of Silence

  I sit holding his head as he writhes during yet another seizure.  His eyes roll back in his head and he turns a horrible shade of blue.  He chokes and I do all that I can do keep him from biting his tongue to shreds.

The Sound of Silence....
"And in the naked light I saw
Ten thousand people, maybe more
People talking without speaking
People hearing without listening...and no one dare, Disturb the sound of silence."

These lyrics have been going around and around in my head a lot lately.  They aren't the best lyrics, or maybe they're just hard to hear.  When I googled the song it came up under, "Disturbed Lyrics"
Well I'll go with that.  I am feeling deeply disturbed.

Sure it's mostly the same old thing I'm upset about.  It's the masses refusal to hear.  The medias refusal to report.  The Congress's refusal to care.   I found it ironic that my son couldn't hear after his MMR and he has never been able to speak again.  Funny that by silencing our children, they have also made the public DEAF!

As I was driving home from the clinic this past week, I kept thinking of that age old question, "If a tree falls in the forest, and there's no one around to hear it, did it make a sound?"  I wanted to SCREAM!  SCREAM louder and harder than I've ever wanted to scream.  But I am pretty sure, just like that tree, there is no one to hear it.  You see this life we live, this life of pain, and sickness, and fear was not my choice, certainly not my son's choice.  Believe it or not, accept it or don't, my son was vaccine damaged.  That's right, I said it right out loud.  I SAID IT, and I STAND BY IT!!
He was fine one minute and the next he was BLUE and not breathing.  I knew the minute it happened, but all the doctors just kept trying to say it had to be something else!  Really?  Why did it HAVE TO BE SOMETHING ELSE?    However, they had no other answers.  After 18 long months of running tests, and wrong diagnosis's, they had ZERO answers.  I have a thought, maybe, two plus two actually EQUALS FOUR!!!  Imagine that?

Someone beginning to navigate this vaccine world with a new baby, someone I care a great deal about....tells me she does not read my "VACCINE POSTS" I admit I was a tiny bit surprised, and sad.  Okay, maybe shocked, I know a ton of people block me, and others just scroll as fast as they can.  I've been told how upsetting the truth is.  It's fine, I get it, you rather not know the truth.  It's super uncomfortable and you're not dealing with it every single day.  You get to sleep 7-8 hours every night.  Unlike my 25 years of averaging 4 hours.  You're not praying to live forever because you don't have to worry about WHO will care for your vaccine damaged child after you finally collapse into the grave.  I could ignore the truth too.  I could do it if I was you.  I don't know because that information didn't exist 25 years ago.  But it does exist now.  Honestly, is any excuse good enough to inject toxins full of heavy metals, and fetal dna into your baby without you feeling comfortable that you've done the research?  WHAT, WHAT do I have to do to get you to consider the possibilities?  Do I scream louder?  I imagine this blood curdling scream from a heart that has been broken over and over again for the last 25 years should be enough!   The blood curdling scream that I hear inside my mind when I realize you might not be willing to consider the truth, is so loud I shake my head to silence it.   Somehow you still can't hear me!  Do I send you more research?  I'm pretty sure that you wouldn't read that either.  What do I do?  How do I reach you?

The problem is, I KNOW WHEN YOU WILL HEAR ME.  After that injection that changes your babies life.  I'll be the first one you call after the doctors have no answers for you.  I'll be the one you're asking what to do.  I'll be the one that will help you.  I'll hold your hand, I'll cry with you.  But.... couldn't you just let me save you today instead? THIS IS NOT ALL ABOUT ME AND MY SON!  NOW IT'S ABOUT YOU, AND YOU'RE BABY!
Couldn't you just HEAR MY SCREAM TODAY?

I know it's not popular, I know it has lost me friends, and it won't win you any friends either.  But the reality is, if you choose the hard way.  If you choose to protect that tiny little life that God so graciously gave you.  Then WHO CARES about those who aren't on your side.  I PROMISE, let me say that one more time, I PROMISE that if you will research for say.... 30 minutes you will NEVER vaccinate that baby.  I CHALLENGE YOU to do so.  Isn't your babies future worth 30 minutes?  You prayed so many years for that baby.  Now you get to learn what it's like to love someone so much more than you have ever loved yourself.  You will protect that baby from so many perceived dangers.  This danger, has been hidden.  Cloaked in deception and lies.  Covered by billions of dollars that lines the pockets of our government officials, who love money more than children.

So let's consider for a minute what might happen if you don't vaccinate.  First your baby gets whopping cough.  That's bad.  It's horrible to watch and hear.  It could require hospitalization.  It's NO FUN.  Will your baby die, the chances are SO slim in America.  (the CDC says that 277 people died of pertussis from 2000 - 2015)  So five years later you dodged that bullet, and your six year old gets chicken pox. It's uncomfortable.  They will probably run a fever, the misery factor is off the charts.  They may be left with a few little scars, but they'll recover and now they are immune.  Good trade.  Two more years pass and your 8 year old comes down with measles. (Probably exposed by someone who got the vaccine and is still shedding the virus)  Wicked, wicked fever, lasts at least three days.  You need to monitor them, and keep them as comfortable as possible, you have to take off work... again, now their immune to measles, again, it's a good trade.  But none of these, not one of these is going to leave your child with brain damage.  With a life of seizures, with their future and all their hopes and dreams gone.  (SCREAMING-) NONE OF THESE!!!!
disclaimer - I am not a doctor.  I do know that there have been RARE cases of death with measles, and I do mean rare.  There has even been death with whopping cough, and brain damage from people who let their childs fever go unchecked for days)  although the chance is almost nil.  However, your chance of autism is 1 in 68.  ONE IN SIXTY EIGHT!!!!Yeah I'm screaming, ONE IN 68!!!

The tears pour down my face as I sob and beg God to open your eyes, your ears, your heart!  How do I NOT tell you these things and sleep at night?  Today my son isn't eating.  He also has Crohns disease, thanks to his vaccine damage.  The pain he is in daily makes me shudder as I think on it.  I sit holding his hands as he writhes during yet another seizure.  His eyes roll back in his head and he turns a horrible shade of blue.  He chokes and I do all that I can do keep him from biting his tongue to shreds.  As I do this, I think of you, and all the young mothers out there with cotton in their ears.  I think of the young doctors who KNOW the truth, but have been silenced by their boards, and employers to keep their mouths closed or lose their jobs.  Then I wonder... would I have listened?
Would I have researched all those 26 years ago?

I don't know the answers to any of those gut wrenching questions, but what I do know is, I wish with every cell in this mommas heart that I had been challenged to do so.  Honestly there is no other choice, I will post this blog, and pray you read it.  I will beg God to move this blog up on the google search engine every time a young mother starts to search.  Mostly I will pray for all of you who have little ones and you're struggling with what to do about the next round of vaccines.

My son has stopped seizing now, and he's beginning to breathe.  His color isn't a normal pink yet, but it's no longer twilight blue.  I lay my tired head on his panting chest and listen to his heart beat.  In the thump thump I hear, "speak out mother.  Tell them.  Save as many as you can!  Make something good out of all this suffering!  Please, make my life matter!"  I sit up with an even stronger resolve.

His eyes blink open as he swims up towards consciousness.  His hand is shaking hard, but he reaches towards me with a thousands words written in his eyes that I cannot read.  My resolve increases, and I know my voice will now be amplified by adding his voice to mine.
If I stay silent, then they have silenced him as well.  I cannot allow that, they've stolen so much already.

The sound of guttural choking, the sound of body parts thrashing, the knowing looks as he holds my hand and wishes for a different life.  This, this is the COST of SILENCE.

"Fools, " said I, "you do not know
Silence like a cancer grows
Hear my words that I might teach you
Take my arms that I might reach you."
But my words like silent raindrops fell
And echoed in the wells of silence

And the people bowed and prayed
To the neon God they made
And the sign flashed out its warning
And the words that it was forming

And the sign said,
"The words of the prophets
Are written on the subway walls
And tenement halls."
And whispered in the sound of silence

**Research websites
www.vactruth.com
www.generationrescue.org
www.thinkingmomsrevolution.com
www.ageofautism.com
www.callous-disregard.com
www.canaryparty.org

Life Support - for my mother

Wikipedia

Life support - refers to the emergency treatments and techniques performed in an emergency situation in order to support life after the failure of one or more vital organs.  

What a vivid lesson, this past month has brought.  My precious momma laying in a hospital bed.  Hands tied down, and a big 'ole tube, rather several,  stuck down her throat while she fought for her life.  And fight she did.  They kept drugging her and drugging her, and she still fought for consciousness.  It was incredible, and also one of the saddest things I've ever seen.

I don't think it was life she cared that much about, however ALL her children sat at her bedside, praying, and encouraging, and telling her how much they loved her.  This woman loves her children, and she was NOT gonna miss seeing them, even under these circumstances.

The one of the hardest parts of situation, was the fact that she could not speak.  In the beginning we gave her paper and pen and she wrote.  She wrote her needs, she wrote her desires, she even joked with us.  However as the severity of the situation and the fear and drugs took over, nothing she wrote made any sense.

“Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.” 
― Lao Tzu

The kids, and even the grand kids would sit in her room for hours, and try and try to help, to understand what she needed.  She did the best she could, but she would constantly throw up her hands in despair, because we couldn't figure out what she wanted or needed.  I cried, and I grieved and I couldn't believe how close to my own life at home this was.  The nurse actually said to me, "you can't try any harder, she really isn't going to remember much of this."  I said, "But, I should be able to figure it out!  I have spent almost 25 years reading someones hand gestures, their eyes.  Discerning their intent, just by gut instinct.

You see, my son, Britton can't talk.  He uses his hands and his eyes, and anything at all to help us communicate with him.  He occasionally will still throw up his arms in despair.  His brain was damaged when he was just a baby...Our daily life seemed so much like trying to understand my mom while she was on Life support.  I never thought about it that way, and yet....  every day is about giving him the support required to stay alive.  He can never be alone.  He can't make himself understood, he is really at the mercy of whoever is with him.

“The world breaks everyone, and afterward, some are strong at the broken places.”– Ernest Hemingway

The similarities are pretty remarkable when you think about it.  His health has been a rollercoaster ride since the very first seizure back in 1991.  He could talk back then, not many people realize that.  He talked a blue streak as a matter of fact.  He loved to sing and repeat children's poems.  When he began to lose his ability to speak he would watch Disney movies nonstop.  I think he lost a lot of his ability to know what they were saying, so he kept trying, because he knew he could understand BEFORE.  sighhhhhhh  Such an awful thing to happen to a tiny child.

Then it was in and out of the hospital for tests, for years.  Heck we still do it.  But life-support has never ended for him.

Mom had that tube down her throat for four days.  She begged me nonstop to get it out.  She would beg me to untie her hands, and I would do so every chance I got.  (Inspite of the fact that my sister kept telling me I was going to "hospital jail!")  I would sit on alert, making sure she would not be able to pull the tubes out before I could stop her.  (Sitting on alert in a hospital, keeping watch is something I've had a lot of practice at.)  Having that tube down your throat, really is beyond terrible!  It is so unbearable that they give you paralytic drugs so that you don't gag to death.  I don't expect you ought to be conscious with that happening to you.

Truly, severe autism is pretty awful too.  In so many situations I've wished he could be unconscious so he didn't have to know what his life really entailed.  From the tiny two year old, losing his language, staring at me in confusion.  The nine year old, crying every single day til he vomited and mercifully falling asleep.  To the life of seizures of unknown origin that just come out of the blue and steal his health and everyones hope.  To the young man, who watches his nieces and nephews, born, and learn to speak and the questioning looks when he wonders why he is different.

I've felt so responsible all his life.  I spent years, doing all the therapies I could find.  Hoping and hoping and hoping.  Sitting him in my lap and begging him to see me, to hear me, "come back to this world."  I truly believe he has spent his life trying with everything in him.

Once again I have to say he is the bravest person I have ever known.  He still smiles, he endures more than I can even comprehend.  He fights those "straps around his wrists, and he begs me to set him free."  Every single day I try.  Every single day, I'm willing to go to "hospital jail" if I can make his life one tiny bit better.  It occurred to me that he's a lot like my mom.

"Promise me you will remember you are braver than you believe, stronger than you seem and smarter than you think." A.A. Milne

I know this is a little different than most my blogs, however I am going to add this comment.   You should have written down if you want life support or not.  If you do, GREAT, tell someone.  If you don't, TELL SOMEONE, and get it down on paper.  Life is beyond unpredictable,and I wish like anything my son could tell me what he wanted from the very beginning.  Of course that's not possible, but my husband and I have had long talks about life support.  It just isn't possible to know the contingency for every situation.  

It was brutal not knowing for sure what my mom would want if the situation got worse.
By the way,  we got a happy ending.  On day four, she miraculously began to recover.  The fluid drained out of her lungs, and she was able to breathe on her own.  In spite of the misery, my mom is a very unusual individual.  No complaining, no whining, just thankful.  She really is someone special. I am grateful she is my mother, I've spent lots of years being amazed at her faith, and her acceptance of her constant illness and pain.  However she never gives up hope of healing.

I've never understood how God chooses which people he heals, and which people he doesn't.  At the end of the day, I'll just thank Him and be grateful that life support is a possibility when needed.
I may have never felt so thankful.  My mom has lived on the edge of severe illness for longer than 15 years.  I realize that I will have to face living without her someday.  This "little scare" was some kind of a wake up call, even though I thought I was prepared, I am not.  I felt like a little girl, as I wrapped myself around her as she lay in that bed trying to breath, all I thought was "mommy!"  Apparently we never out grow loving our parents.

“But there's a story behind everything. How a picture got on a wall. How a scar got on your face. Sometimes the stories are simple, and sometimes they are hard and heartbreaking. But behind all your stories is always your mother's story, because hers is where yours begin.” 
― Mitch Albom, For One More Day

"You never know how strong you are until being strong is the only option you have"

Jesus can even use tic tacs

"Mystery is not the absence of meaning, but the presence of more meaning than we can comprehend."

Autism is indeed a huge mystery.  Ask any parent and they will usually shrug their shoulders.  People say to me, "What does he want?  What does that mean?"  Obviously I'm his mom, I should know.  But I don't.  I try try try try try.  Only God in heaven really knows how hard I've tried.  I still don't know what he's thinking, what he's feeling, if he's hurting.  Time has given me clues, but truly clues are all I have.  It's always a mystery, always a risk that I'll make a mistake.  Inevitably I make lots of them.

I recently reread the Pilgrims Progress, and it really wasn't what I remembered.  I had to laugh at how many times Pilgrim made a mess of things.  (Poor pilgrim, I am him!)  He got into trouble, he gave up the fight, he flirted with suicide, he was depressed and sad and spent lots of time in despair.  Most the books I read are all about living in Victory and how we can just get through this life on the mountain top.  Well, somehow Pilgrim didn't read those "self help" books.   I'd like to live on the mountain top, but I realized the mountain top is small and the valleys long and deep.  At a particularly low moment in Pilgrims journey,

Mr. Hopeful says, "Be of good cheer, my brother, for I feel the bottom and it is sound." 

So there you go.  How often in my life with autism, I need to be reminded that even when I'm at the bottom, this is as low as it goes.  I try to translate that for Britton, to encourage him.  I'm sure he wonders where the bottom is.  

So a couple of weekends ago, we woke Britton up around 8:45 and went on to church.  He was super easy going, and pliable.  He just did whatever, no growls or complaints.  We sat through the preaching and he didn't seem to want to leave.  So, we decided we would wait through the second service and just see how long he would stay.  It was such a rare treat for us.  One of the pastors came over and was visiting with us.  Britton reached in my purse for his empty box of tic tacs and I explained to him he had eaten them all.  (We bring tic tacs and hand lotion, those two things help him sit a little longer.)  Nothing was really said.  But honestly, tic tacs make all the difference as to how long we get to stay in church.  I massage his hands and arms and he just sits and then I give him a few tic tacs.  Whatever it takes to get to hear the Word we'll do it.  :)  The Pastor asked if we knew there was a book store and a coffee shop, and places that "might make church easier for us with Britton."  It was so observant, kind and unusual.  She offered to take me around and show me everything.  I was shocked enough to just nod.  Church life with the disabled is a very big test.  By that I mean, "church people" are not normally that nice to families of the disabled.  I'd describe it as more of a tolerance than acceptance.  We actually had a man at one church tell us that Britton would not be welcome in the regular services if he was going to make any noise.  Every once in a while I have had enough, and that was not that man's lucky day.  I replied, "Jesus made noise, I wonder if he is welcome in the regular services?"  Oh yes, I said it, and no I'm not sorry.  But back to the tic tacs.

I don't mean to sound tainted, although I'm certain I am.  I don't mean to sound cynical, although I'm sure I'm that too.  I just mean that it's unusual for someone to even notice what might be needed by a family with special needs.  Most churches are not comfortable with disabilities.  I mean, seriously, who is?
All the families that have children with disabilities that I know of, are constantly begging for help.  The truth is, the church hardly knows where to start.  The good news is, that the ones that really love Jesus do WANT to start.

"Jesus grieved over many things that happen on this planet, a sure sign that God regrets them far more than we do.  Not once did Jesus counsel someone to accept suffering as God's will; rather he went about healing illness and disability."

We have been loved by many Godly people, although autism is really hard to love.  We had a precious pastor who blocked off part of the back row, just so we could always sit where it was easiest for us.  God bless him, he's such a good man.  I think perhaps Autism families think that asking for what we need would just be too selfish?  However I cannot tell you all the emotions I felt that Sunday morning.  Just before church was about to start again, this same precious woman brought over a box of tic tacs to Britton.  I looked at my husband, and his eyes also filled with tears.  Britton signed "thank you" then blew her a kiss.  Then her eyes filled with tears.  I really couldn't believe it.  I don't know where she got them.  I know she was working and had a lot of more pressing matters, but she just wanted to help.  My husband and I have cried so many tears over that box of tic tacs.  Thank you Jesus, and thank you to the church.  Disability families don't really need as much as you might think.  When tic tacs seems like more love and concern than we could imagine, it seems the church needs to open it's eyes and realize it might not be that hard.   We just want to be included, noticed (in a normal way) cared about, and loved.  I suppose that's what everyone wants.  

"Truth strikes us from behind, and in the dark" 

Henry David Thoreau

But I believe in the church, I believe in God's family, though I have to admit that it often takes faith to do so.  Faith is not something as solid as I wish it were.  It's not a skill I've mastered, it's more like beach sand, falling through my fingers.  Faith has been in my life more of a gift from God.  I need to pray for it every single day.  I recite, "Faith is, the substance of things hoped for, the evidence of things not seen."  Over and over and over again.  The times I've experienced complete faith I can probably count on one hand.  Now if you're not a Christian you may think that's a strange thing to say.  But faith is not something we can count on our flesh to embrace.  As a matter of fact, everything inside of me screams, "are you insane, why do you HOPE for what is impossible?"  (BIG sighhhhhhhh)  Because God is the only one I can really count on.  Go ahead try to decipher that paradox.  :)  I cannot explain it, I just know that it is.  I know that it has changed me, and that when all else fails, God will indeed hold me when everyone else is gone.  

"If knowing answers to life's questions is absolutely necessary to you, then forget the journey.  You will never make it, for this is a journey of unknowables--of unanswered questions, enigmas, incomprehensibles, and most of all, things unfair."  

The people I love, I credit for good things and try not to blame for bad, assuming instead other forces are at work.  Together, we have developed a pattern of trust and love.
Over many years, through personal experience and God's word, I have come to know certain qualities of God as well.  God's style often baffles me; he moves at a slow pace, prefers rebels and prodigals, restrains his power, and speaks in whispers and silence.  But I see a great deal of evidence of his long suffering, mercy, and desire to draw us rather than demand our love and attention.

"When in doubt, I focus on Jesus, the most unfiltered revelation of God's own self.  I have learned to trust God, and when some tragedy or evil occurs that I cannot synthesize with the God I have come to know and love, then I look to other explanations."

And, I remember God's love, and I'll always remember the tic tacs.

"Mystery is not the absence of meaning, but the presence of more meaning than we can comprehend."

Autism is indeed a huge mystery.  Ask any parent and they will usually shrug their shoulders.  People say to me, "What does he want?  What does that mean?"  Obviously I'm his mom, I should know.  But I don't.  I try try try try try.  Only God in heaven really knows how hard I've tried.  I still don't know what he's thinking, what he's feeling, if he's hurting.  Time has given me clues, but truly clues are all I have.  It's always a mystery, always a risk that I'll make a mistake.  Inevitably I make lots of them.

Last weekend Britton overslept.  Now that seems like a statement that is not big deal, except, he doesn't sleep.  By that I mean, he averages 4 hours a night.  It's been that way for most of his life.  Randy and I have been tired for 24 years.  (tired smile)

I recently reread the Pilgrims Progress, and it really wasn't what I remembered.  I had to laugh at how many times Pilgrim made a mess of things.  He got into trouble, he gave up the fight, he flirted with suicide, he was depressed and sad and spent lots of time in despair.  Most the books I read are all about living in Victory and how we can just get through this life on the mountain top.  Well, somehow Pilgrim didn't spend much time there.  I'd like to, but I realized the mountain top is small and the valleys long and deep.  At a particularly low moment in Pilgrims journey, Mr. Hopeful says, "Be of good cheer, my brother, for I feel the bottom and it is sound."  So there you go.  How often
I need to be reminded in my life with autism that I'm at the bottom and this is as low as it goes.  

So last weekend, we woke Britton up around 8:45 and went on to church.  He was super easy going, and pliable.  He just did whatever, no growls or complaints.  We sat through the preaching and he didn't seem to want to leave.  So, we decided we would wait through the second service and just see how long he would stay.  It was such a rare treat for us.  Our pastors wife came over and was visiting with us.  Britton reached for his empty box of tic tacs and I explained to him he had eaten them all.
(We bring tic tacs and hand lotion, those two things help him sit a little longer.)  Nothing was really said.  But honestly, tic tacs make all the difference as to how long we get to stay in church.  Our pastors wife asked if we knew there was a book store and a coffee shop, and places that might make church easier for us with Britton.  It was so observant, kind and unusual.  She offered to take me around and show me everything.  I was shocked enough to just nod.

I don't mean to sound tainted, although I'm certain I am.  I don't mean to sound cynical, although I'm sure I'm that too.  I just mean that it's unusual for someone to even notice what might be needed by a family with special needs.  Most churches are not comfortable with disabilities.  I mean, seriously, who is?

"Truth strikes us from behind, and in the dark" 

Henry David Thoreau

Faith is not something as solid as I wish it were.  It's not a skill I've mastered, or something that I hold in my hands.  Faith has been in my life more of a gift from God.  I need to pray for it every single day.  I recite, "Faith is, the substance of things hoped for, the evidence of things not seen."  Over and over and over again.  

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