she told me

She told me in confidence that she thought she gave birth to a monster.  She looked to make sure that nobody was near; her eyes darted down and she whispered it.  “A monster.”  The odd thing is that his birth had been so peaceful that January evening.  Quiet room, dim lights, hushed voices late at night, and he just slipped out.  He just slipped out.  Absolutely no pain, it’s baffling.

She told me that when he was born he looked like a little alien.  He hardly slept for 2 years, and his hunger was insatiable.  When he cried, her heart would race and her eardrums would go numb.  She would catch him staring in his crib at things she could not see.  Stare so long, his eyes would drip water.  But he would twirl her hair when she nursed him and when she draped his warm body over her shoulder to burp him; she would feel the softness of his cheek against hers so intently, she’d fall in love with him all over again.  She’d forgive him for all those sleepless nights and all those staring fits that would leave him unsettled and clingy.

She told me that the time after he became adorable, he learned to walk.  He walked a little late.  He took to the habit of running from things that weren’t there and he would fall and scream into her bosom.  He would look up at the ceiling with a face of horror until Zonegran stopped the infantile spasms.   He said the fan blades were covered with blood.  He would see pizza on the walls and see shadows move without light.  And when they were trying to be good Catholics, he would say the inside of their church smelled like old people’s burning flesh.  But he looked so cute when he played on his wooden airplane and when he wore that adorable Janie and Jack puppy sweater; she’d fall in love with him all over again.  She’d try to forget all those odd images he put in her head and those strange things he whispered in her ear.  She tried to forget her anxiety over all the tests he had and medications he tried.  She’d try to crush the panic that would wake her in the middle of night.

She told me that when school started he had a hard time paying attention,  hit the teachers, and would play chase without their permission.  He would cry for an hour before school would start and his dad would have to carry him to the car while he put up a fight.   But he would draw her pictures and write,  I love you Mommy.   He’d ask so sweetly, “Do you want a hug?”  She’d  fall in love with him all over again.  She’d forgive all those meetings she had at the school and tried not to grow jaded when explaining his situation.  She was always explaining the situation.

She told me about one day in March when she received a phone call from the school to pick her son up early because he had lost control in the classroom.  She walked tall into the special classroom and apologized for all the books and chairs strewn all over the room.  “Really, he knows better,”  she’d say while looking in their eyes brimming with pity.   She reached for her son’s hand, walked out of the building, and made it to her car before she collapsed and cried.  She cried for 2 straight hours and couldn’t even make dinner; she was too full with sorrow.  She was exhausted and felt helpless.

She told me that he could dream of the future and have night terrors that haunted him for weeks.  He’d get up at odd hours of the night to gather and cut up his clothes.  He’d sprinkle cinnamon all over the house 2 days before Christmas because he liked the smell.  And dump baby powder all over his room because he said, “I miss the snow.”  She looked surprisingly good for being awake all that time.

She told me that when he got older, the monster in him evolved.  Taller than her – in some ways smarter than her.  He was moody and sad,  happy and mad.  Up and down he went.  Around and around he went.  He was always able to lure her into his trap.  He would even catch her eyebrow twitch and it seemed that he could read her mind before she spoke.  He was always inches from her – never far.  Circling around her – this way and that way.  Pecking at her, laughing at her, chasing her, clawing at her – this human that had just slipped out into the world.  She took to the habit of wearing long sleeve cardigans in the most humid of conditions and would think, it just isn’t fair.

And then she told me that, overnight, she became incredibly fond of the drink.  One glass at dinner, then another before bed.  She’d wake up with headaches and become so depressed that she’d wish she were dead.  Her entire being was filled with fright and even her soul, her aching soul, would mourn for it to be over.  And she felt betrayed because she asked, “Isn’t your soul supposed to be stronger?”  Traitor, she’d call it.  She said she felt empty and blank.

How much can one vessel hold?”  she’d ask.  And with every night that she went to bed thinking she was done, she’d wake up and start it all over again.  Each and every night, each and every day.  She then told me that when the best place in the nation said, “Your son is a candidate for our inpatient program,”  she was surprised to be hit by grief instead of relief.  A few moments passed and then she just stopped.

She told me in confidence that she wanted to tempt fate in a sea of aqua glass full of teeth and feel the wind rush past her face.  Witness the brown clouds get taken over by the foam.  Feel the pull toward the moon and float.  Revel in that and not talk about home.

 

madness

 Does it mean I love you any less,

 if I want to keep the best of you,

 but want to change the rest?    

 

I don’t know why I’m feeling the way I do.  The way I was last night, it wasn’t me, it wasn’t right.  But he started up again; wanting this, wanting that.  Throwing this, throwing that.  He took my phone and jammed it into his wall.  The glass is shattered, I can barely make a call.  I tried to keep him in his room as you were moving his wooden toy toaster and his broom.  Removing scissors, long objects, and most anything that he could turn into a weapon.  We, unfortunately, know that part too well.  I kept him in his room as long as I could, but I let him run out, thinking that it would help calm him.  He said he was calmer anyway.  What a good storyteller he is.  Off to the sitting room he went, to put holes in the walls.  I tried for ten minutes, but I wasn’t able to block them all.  Out he ran, he said his blood sugar felt low – 

Ok, I’ll test you – let’s calm down, let’s go…”

He tried to go into your room – to put holes in the wall…he said. 

My voice got louder, my face burned with confusion, exhaustion –

Please calm down.  Please go to your room and calm down.”  Please, over and over again.

He punched my arms harder.  I grabbed his arms just to stop the pain, and you thought I took it too far. 

Mom, give him space – let’s have space!”  You repeated yourself louder and he felt more rage.  I ignored you, concentrating on your brother, but I saw his wrath boil into a crimson fury.  He was on fire and he kicked four new holes into our walls – big ones too, it was what I didn’t want him to do.  I felt warmth escape my ears – I thought…

Why does it seem nobody can hear?”

I collapsed to the ground and grabbed my head with my trembling hands and I wailed a scream I didn’t know I had.  I became primal for about five seconds.  I lost my sense for a fraction of time, I lost my wit – I witnessed my soul escape and enter again.  My vocal chords instantly felt ripped apart; very fitting, they matched my heart.  Something happened, something clicked.  I’m one step closer to feeling insane.  One step closer to losing my mind.  It’s all so very unfortunate.  

This above incident happened August 10, 2017, and it left me at odds with my youngest daughter for about two days.  I felt decimated – perhaps even betrayed a little.  I got over it – but I guess that’s what mental illness can do.  It can turn loved ones against each other in the swirls of madness, in the twisting of insanity.  Prompt loved ones to turn into frozen statues paralyzed with fear to only thaw out long enough to survive.  That’s what we’re doing now, surviving.

These past two years have been really trying but something about these past few months have been especially sinister.  His punches are harder, the damage is greater, and his thoughts are more tortuous.  Is it the Abilify?  Is it the antidepressant?  Is it too much Abilify?  Does he need a new seizure med?  Who knows anymore.

I remember when a trial of Seroquel turned him into a demonic giant with powers that terrorized us day and night.  Night and day.  Two weeks of pure hell and the games got sicker when I had to increase it.

We need more time to see if it will work,”  the doctors would say.

I would nervously laugh, and think, “I pray we have more time.”  It was just my youngest daughter, about 16 at the time, and I during five days of the roughest part of the med trial. My oldest daughter and husband were on a school trip to Paris.  My Mom, who was staying with us at the time, went back to Missouri to help out my sister and her family.

My daughter and I would wake up to battles and the ritualistic dismantling of our house.  I would stand at his doorway during an event to lessen most of his tornadic activity that could happen to the main part of the house.  But most of his torment landed on various areas of my already bruised body.  I would put on an old winter jacket that my husband used to wear and put on heavy utility gloves, but it offered only a bit of protection.  I became the guard and he became the beast – with foam dripping out of his mouth, and my brain would have to recover from all the horrific words he shouted.

The longest event on one particular bad day lasted a little over an hour.  It was one of the five or six events per day he would have during this Seroquel trial.  My heart raced and I would feel like I ran a marathon after each event.  Between episodes I would put ice packs on my arms and maybe even my face, rest, and pop Motrin like candy.  My daughter would ask if I was okay, but her eyes had already been stained with his violence.  There’d be no turning back.

We’d have a little reprieve where he’d act more “normal” and we’d take a walk or play a game, but we didn’t venture out during this time.  We’d eat our meals between violent events and act as if nothing had ever happened.  He’d say he loved me and I’d respond back with an, “I love you too.”  Most always an event would happen before bedtime and then he’d collapse into bed, praise the Lord.  Once he was asleep, we would assess the damage of the day and clean up accordingly.  Put home decor back on their resting shelves, move end tables, and place remotes back to their original, eager location.

During this time, when he was asleep, the house was unnaturally quiet and appeared unshaken.  My daughter and I would get our pajamas on, fix a snack, and fall on the couch.  After a console session and a good cry, we’d  put on a movie and zone out.  Escape to a different world where we weren’t hurt, bullied, or terrorized.

Around midnight, we’d say goodnight, crawl into our beds, and pray for a better day to be waiting for us.  We’d close our eyes and let the stillness lead us into calm waters.  We would either dream of old ladies whispering hush or bloody mouthed wolves that chased.  There was no in-between.  It was madness.

 

hard time

You know it’s been difficult.  I don’t need to remind you when you already feel the pulse of the beast that ails us.  Hear the unmentionables of the many voices that seem to spew out of his mouth to poison our ears.  Oh God, why is that voice in my own ears?  See the shadow lurking around the corner taking the breath from our lungs one molecule at a time.  Running away swiftly from his sighs when it’s dark.  I wake up blind in the middle of the night thinking about these times.

Cry out for help but not one person hears.  People witness the crimes but turn around as if I were a ghost.  As if we were all ghosts.  I want to scream, “Can’t you see us?  Do you see this?”

But I yell only at clouds – vapor that takes my consonants and vowels and swirls them around till they grow into an angry twister that finds its way back to me.  It always finds its way back to me.  To rip me into shreds, fill my heart with dread, and slam my head to the floor whispering, “Are you ready for more?”

I don’t know how much more I can take, when at any given moment, while sitting at the kitchen table, my eyeballs explode with sadness.  The drooping orchid that has not yet bloomed reminds me of this.  Our crumbling house reminds me of this.  The blue hue and scars on my arms reminds me of this.  Being stuck is this.  What life is this.

I don’t know how much more you can take, when at the same table, during a different meal; I watch your tired eyes swell up with tears so large I’d need a bucket to collect them all.  And my heart silently breaks watching each one fall.

 

 

layers

My son drew this last year.  Last year was a hard year.  Challenging behaviors that got worse worsened and I wonder how that’s even possible.  But here I am staring at this beautiful picture that he drew, that didn’t win the Rare Artist contest, but who cares?  It is still flipping awesome.  Layer upon layer of oil pastel.  I could, in fact, make an oil pastel chip cookie from the extra wax bulging from this picture.  But that is what he does.  More and more and more of whatever he is fascinated with, or not so nicely put, whatever he is OCD’ing about.  But this I can handle – because at the end of the binge is something positive to show for it.  I walk into his room and collect his art, as if on a treasure hunt, and I keep the ones that evoke a response from me.   A smile, perhaps a wince, because they aren’t always neat and pretty.  Sometimes the pictures involve teeth, lots of pointy teeth.  Why does he draw the pointy teeth?  Why does he so easily drift to the dark side?

I remember when he was little he was stuck on painting a red smiley face on crisp white paper.  It always made me happy.  One such painting on canvas was bought for $100 through a tuberous sclerosis charity auction.  It was a proud moment.  But after a couple of years – the layers of stacked red smiles became a little too much.  I begged for him to draw/paint something different.  After a few houses and sunsets – he graduated to complete faces.  Some are like the above face but most are not as nice.  He titled the drawing above, Mummis, layer after layer of colors that represent both an explosion of emotions and an entrapment of emotions.  Again, how is that possible?  For my son it’s possible because he lives with “Mummis”  everyday.  For him to feel sadness, frustration, boredom, hopelessness, confusion, embarrassment, anger, frankly any emotion without the capability to express it often leads to the explosions.  Explosions of sadness manifest as anger which leaps out in acts of aggression.  Layer upon layer of emotions that for him can be catastrophic.

I like Mummis.  In this still form on paper it appears to be pensive, even peaceful.   Peaceful—the opposite of my life right now.  I could layer and layer that forever.