Touching the Garment

 Now a certain woman had a flow of blood for twelve years, ²⁶ and had suffered many things from many physicians. She had spent all that she had and was no better, but rather grew worse. ²⁷ When she heard about Jesus, she came behind Him in the crowd and touched His garment. ²⁸ For she said, “If only I may touch His clothes, I shall be made well.”  Mark 5:25-28


If she could touch just the fringes of the Nazarean's robe, she knew she could be well again.  Faith,  determination and desperation.


This morning I was lacking in faith but was full of determination and desperation.  We were running late to church, dodging all manner of obstacles to get there.  This would not be the first Sunday morning that we've reluctantly shook our heads and decided that we weren't going to make it to services.  This morning it just had to be different because we were tired of the defeat.  


Living with autism has been exhausting to me lately.  This morning it felt as if I was without strength.  It would be easier to stay home.  I knew we were going to be a half an hour late, but I didn't care.   Today my strength and joy was sapped and the only way to revive it was to meet Him at the foot of the cross.  I was desperate today to touch the hem of His garment.  I need healing.  Not physical healing, but emotional and spiritual and mental healing.  I am exhausted.  I am frustrated.  I am grieving.  I am out of ideas.  Just get me in the building.  Just let me hear the music.  Let me see some familiar faces.  Let me hear from You.  Let me just touch the hem of Your garment.


David and I did get there and, as predicted, we were a half an hour late.  We had to sit in the balcony, and in order to get the last two seats together, people had to move over for us.  Embarrassing, but desperation has its price.  The sermon had already started and the familiar voice of our pastor, Britt Merrick, was a Balm of Gilead to my heart.  


We were in the building.  We were sitting down.  The buzz of the frenetic rush started to ebb away and my ears started to tune in the words I was hearing:  "Power belongs to God."  (Psalm 62:11)  "Be strong in the Lord and the power of His might."  (Ephesians 6:10)  


What did he say?  He said power belongs to God.  He said be strong in the Lord, not in your own insufficient strength.  It should not surprise me that when I confess what I am lacking that He is ready to tell me that He can provide it.  He went on to say, "Be strong in the Lord."  Thank you.  I needed to be reminded of that as well.  


I do not possess in my natural state the strength to raise an autistic child.  That power has to come from somewhere else.  I can research, I can attend workshops, I can go to support groups, I can take him off gluten, I can take him to the best autism therapists, but that is not where my strength comes from.  In order for me to even do those things I have to be plugged into a continual source of power or I will quickly burn out.


God met me there this morning, late, frazzled, depleted and bedraggled.  I had touched the fringes of His garment.  Two thousand years ago, a desperate, sick, exhausted woman pushed her way through the throng of people to touch the edge of Jesus' robe.  He was surrounded by men, women and children  pressing in on him and yet he turned to His disciples and said, "Who touched Me?"  The Mark 5 account says that the woman's faith had healed her and that Jesus, knowing that power had left Him, turned to inquire.  He knew who touched Him.  God doesn't ever ask questions because He doesn't know the answer.  He had to draw her out from the crowd.  With fear and trembling she came forward and "told Him the whole truth."  He said to her, "Daughter, your faith has made you well.  Go in peace."


I am so glad we showed up late, because God is always on time.

A View From Above

"We're looking at autism."

He said it before I had a chance to compute that our four-month long odyssey with our county's regional center was over.  Four months ago we met with an intake coordinator to begin the assessment process of diagnosing a developmental disability.  Various clinicians assessed Daniel over these past four months and now I was sitting in the office of a retired pediatrician and a second clinical psychologist watching Daniel line up Legos on the floor.  I heard him say it, and as many parents of autistic children will say, I was strangely relieved.  I knew for certain now that I wasn't just an overly concerned mother.  My base instincts were confirmed:  My child has a lifelong neurological  disorder.

We left and did what we always do:  We found the nearest elevator so Daniel could watch the doors open and close ten, twelve, fifteen times.  It would be at least ten minutes before my husband came back for us after my cryptic text of "we're done."  We rode up and down the elevator.  This is how it goes.  

"Push the button, honey."

"Push," he says.

He pushes the button with zeal with one little index finger.  He waits in eager -- and I mean eager -- anticipation for the elevator to arrive.  His superior hearing detects its impending arrival.  He gasps "Uhhh!" and his eyes get big.  He flaps his arms in excitement.  The doors open and he runs inside.

"Push 2, honey."

"Push 2," he says.

He pushes 2 precisely and happily and as the doors close he puts his face an inch from the door.  This is problematic when there are other passengers on the elevator, especially other mothers.  I used to say, "Don't worry, he won't get his nose stuck.  We do this all the time."  I don't say it anymore.  I just do what my dad used to do -- I people-watch and get a kick out of their horrified expressions.  Daniel is an expert elevator door watcher.  He never misses.

We rode up and down the elevator I don't know how many times.  This time I was robotic instead of enjoying it with him.  I thought how apropos it was that after receiving the news that our son has autism that I would be doing this mindless activity.  I knew he had autism before anyone told me he did and yet I was overwhelmed with a sense of sadness in this moment.  It was official.  It was in writing.  I have a very good track record for having correct instincts; this is one time I wish my instincts were wrong.  It said to me that deep in my heart I hoped the news would be different.

I looked at my son, this precious little person pushing elevator buttons, and was reminded that this isn't happening to me so much as it is to him.  This is his life.  This is his fight.  This is his world and I'm in it.   It is not a world that we ever thought we would be in and suddenly we are thrust into it without a seat belt.  It is not a bad place, but it's a foreign place.  It's a place with labels and a new vocabulary, and road signs that read "try this, next right" and "try that, road closed," and "detour ahead."  And at the end of each day of travelling, I get out of my car and I'm not sure if I was even driving.  How did I get here?

You know those scenes you sometimes see on television and in the movies where someone is standing on a rooftop and then suddenly the camera pans up and out and the person gets smaller and smaller and smaller and the space around you gets bigger and bigger and bigger?  That's what I pictured.  I felt incredibly small with a big space around me as we rode up and down in this elevator. 

But there is Another who has a better view from above.  Jesus said, "I am the Way and the Truth and the Life."  He is the Door.  He is the Bread of Life.  He is the Alpha and the Omega and the Great I Am.  He is the Beginning and the End.  He is the Living Water.  He is the Good Shepherd.  He is the Lamb of God and the Savior of the world.  He is Daniel's God.  He is the Great Physician.  He is Faithful and True.  And He made Daniel exactly the way Daniel is.  Daniel is not a genetic accident.  Daniel is not less.  Daniel is a singular, unique and beautiful child of the King and I throw myself on His mercy and grace to give us strength and vision and purpose to help him thrive.  With all that is within me through His great enabling, I will never stop.  I will never give up.  I will continue to fight to give him a purposeful life, and I will continue to beat down the doors of heaven for him.  His love never fails.  God doesn't use labels like "autistic" and "ADD" and "Down Syndrome."  He calls them sons and daughters, and He loves them -- He loves our child -- with an everlasting love.

Give me a view from above. 

  

This is autism

What do you think of when you hear the word "autism"?  What do you picture?  I always imagined a young boy sitting on the floor with his knees up to his chest, rocking back and forth silently, locked inside another world.  That's all I knew about it.  If I'm honest and dig really deep, I would have to confess that I felt so fortunate that that wasn't my son.  Those poor parents that have to deal with something so terrible.  Tsk-tsk.  Let's be completely transparent and admit that when we know someone who has a child with a disease or a condition like autism that we secretly say to ourselves, "thank God we have a normal child."  I give you permission to say it.  You're just being honest.

Daniel has autism but Daniel doesn't sit on the floor and rock back and forth.  There are children with autism who do.  It's important to say this:  When you've met one autistic child, you've met one autistic child.  Each child on the autism spectrum is different.  This is why it's called a spectrum.

There are good days and there are bad days and it seems, at least in our home, that there is no in between.  Our son has extreme emotions.  

This morning Daniel slept in until an unprecedented 10:00.  He's usually awake by 7:00.  With Daylight Savings Time starting today, technically it was 9:00 to him, which is still pretty late.  He woke up ornery as a rabid dog. Who is this child?  Buckle your seat belt, we're in for a wild ride.  And so our day begins.  At some point before he got out of bed he heard the toilet flush.  This began a meltdown of massive proportions for twenty minutes.  Did he want to flush it?  Did he want me to flush it again?  Did the sudden sound of the flushing take him by surprise?  What's with the toilet flushing?  My theory is that if something happens before he is prepared to receive it, it sets off his sensory system -- a toilet flushing, a dog barking, a sneeze, a cough, the shower, the coffee grinder.  He needs predictability.  Finally we took him into the bathroom -- why it took us this long to figure it out, nobody    knows -- crying, yelling, combative, and flushed the toilet together as a family.  I live in a crazy world.

This is autism.

All is relatively calm now.  Daniel is perched on the couch watching The Jungle Book and singing "I wanna be like you" with his friends Baloo, Mowgli and Bagheera.


Passengers, you may unbuckle your seat belts now.   

Namesake

I looked up the word namesake even though the meaning should be obvious, but questioning everything as I do, I had to be sure.  Indeed, namesake means "to be named after another."  Thank goodness because now I don't have to change the title of today's blog entry.


Daniel was named after my father, Richard Daniel Newberger.  Growing up, I can remember that Dad never liked his middle name and never had a particularly good reason to dislike it.  When it came time to pick baby names, I never had a second choice for a boy's name:  Daniel was it.  Now, it's funny, because after Daniel was born, my dad suddenly loved the name.  You gotta love nepotism.  


My father was born on March 10th, 1925, four years before the Great Depression started.  He was a highly decorated World War II veteran, having served in the D-Day invasion at Normandy.  He served under Patton and was his personal driver on one occasion, in fact, the very day before Patton was killed in a jeep accident.  He saved five of his men from enemy attack and was awarded the Purple Heart for valor.  He stole my heart from the moment I was born.


Dad followed in his father's footsteps as a wholesale garment salesman in New York City and made the unprecedented transatlantic move to California in 1956 because of the weather.  He hated the rain.  He hated the snow.  He really hated the wind.  He hated to get his hair wet.


Daniel also hates to get his hair wet.  Who knows?  Maybe this is a genetic disposition.  Daniel was just two and a half months old when Dad died on December 11th, 2010.  There's a picture of me and Daniel from last year's Ojai 4th of July celebration and when I saw it, it took my breath away.  I saw my father.  Not just my father's eyes, not just his nose, not just his forehead, not just his mouth, not just his eyebrows, but I saw his spirit, his essence in that flickering moment that the camera lens closed.  I can't even begin to explain it. 


I've been thinking about this whole concept of namesake.  There's a sense of a passing of the baton to that namesake.  What has he passed on to Daniel?  Certainly his physical characteristics, but what else?  Dad has passed on his sense of humor.  Daniel loves to laugh.  Music.  My father loved it.  He grew up in the big band era of Tommy Dorsey and Louie Armstrong.  He loved Sinatra and Bennett and Lena Horne and Judy Garland.  After my dad died I would listen to a favorite Tony Bennett CD in the car.  I'd look in the rear-view mirror and find Daniel moving side to side to the beat.  He was only four months old.  It seems to me that Dad has passed on an innate sense of musicality to his grandson and I will be forever grateful because it opens up communication pathways in his brain.  

Of course not all the traits are admirable ones.  As Dad got older and more feeble, he got grumpier.  And who can blame him?  Daniel takes after him and yet he's only 3.  Sometimes I think I'm seeing my father reincarnated wearing a Curious George t-shirt.  "Excuse me, but did you just squawk at me?"  My father used to do that, but in our family we called it kvetching.  Truth be told, I've been doing a lot of that lately myself.  I am my father's daughter and realizing it more and more each day.


There isn't a day that goes by that I don't think about my dad.  I see him in my son.  I wonder what he would be feeling about all of this and what advice or thoughts he would have had.  How I wish he were here to see his namesake, to hear him laugh, to watch him run, and for me to hear him say, "He reminds me of you when you were that age."


Happy birthday, Daddy.


Love never dies.  

Me and Daniel,  4th of July, 2011

Dad, 1943, World War II

Delete. Next moment, please.

I would like to have one moment where I don't have to think about autism.  One moment where I'm not plotting how to rescue him.  How can I make him better?  How do I get him to stop yelling?  Why is he a Jekyll and Hyde this week and not last week?  What is triggering him to hurl his trains across the room?  Why won't he eat?  Why won't he stop yelling?  Should I take him off dairy? wheat? sugar?  Where is the closest hyperbaric chamber?  Why won't he stop yelling?  Did vaccines give him autism?  Did I give him autism?  Will he ever be "normal"?  Why is he afraid of other children?  Why won't he stop yelling?  Maybe a support group will help.  Will I ever be able to finish a thought? a task? a sentence?  When will he stop repeating himself and make me repeat after him?  Why won't he stop yelling?  When will I be able to potty train him?  Why won't he eat carrots?  When will my heart stop racing?  When will he know his name?  Why won't he stop yelling?  When will I stop fighting for him?  Never.


Delete.  Next moment, please. 

   

Pausing at the beginning

Firsts are sometimes hard.  I have in front of me a blank screen begging to become filled with words -- words that I know are crowded inside of my heart and mind just waiting to get out.  I haven't found a way to give them a voice--a proper voice.  Once an avid journaler and never at a loss for something to write down, I have found myself silent over these many months as I move through my son's battle with autism.  It is as if I have taken on his silence, his inability to express himself.  A part of me is hesitant to write anything about the struggle for fear that one day he will read my writings and feel that he was a burden to me.  He is the joy of my heart with or without autism.

Selah means to reflect, to stop and think about something.  It comes from the Old Testament Psalms.  Throughout the Psalms, the psalter, usually David, would play the psalm on the harp and lyre and then pause--selah--and meditate on the Word of the Lord.  This word came to me when I was trying to think of an appropriate title for this blog.  These blog entries are my selah.

True journaling must be honest to be cathartic.  So I will try to be.  And so we begin.

Daniel is 3-1/2 years old, or at least he will be a half a year old at the end of this month, March 2012.  In October of 2011 we began this journey into autism.  We are barely at the threshold.  Tomorrow Daniel will have his evaluation with the school district for special education.  

Today has been one of those days where I hate autism.  I hate it and it hates me and I want to run and hide or hit something or break glass.  But then when you come to the end of those intense feelings, you see your precious, beautiful child and you realize this is not happening to me--this is happening to him.  And then I take another deep breath and ask God to give me enough strength to get through the next hour and the next tantrum and the next session of mindless repetition.  And then I do and then comes the joy when Daniel looks at me and says something wonderful or dances to a favorite song and my heart jumps and I fall more in love with this special little child.  And then I ask God to forgive me for ever being frustrated with him.

Today has been hard for me, but surely it has been harder for Daniel.

I Corinthians 13:4  "Love is patient."