Sunday, February 22, 2015

it will find me.

Sunday.
fancy-pants picture time happened today.
it's been a long time since i've taken fancy-pants pictures.....it's just been hard to continue the tradition without the fanciest pantsed member of our group.

i've been missing him extra BIG lately.

oh, you have no idea.



it's ironic to think that what i miss most is the calmness, the peacefulness, the serenity that my son's presence brought me----because our life, his life was anything but calm, peaceful or serene.
my beautiful boy's journey was never calm, nothing about our world was ever serene or easy.
but HE was.
he was comfort.
he was love.
he was pure strength in it's most gentle form.

there was a distinct peace about my sweet boy, he embodied everything that is pure and good and i got to feel it, to steal bits and pieces of it every time i held him......which was always.
oh, how i miss that. 

i've been trying to find it.
maybe that's part of my problem, i'm searching so hard to find these same feelings of peace and comfort in places where they just aren't meant to exist.
this world can't offer me the things i'm searching so hard to find, i don't think.
maybe if i slow down and stop looking, they will find me.

 little moments like this.
these are the moments i'm reminded of the pureness, the love, the beauty.
it's still here.
i just need to stop and let myself be found by it.


 
i'm trying.
i make a lot of mistakes.
so many mistakes.
this world is a hard place for me to be without my son!
i didn't realize just how much i relied on his presence, his pure strength to lead and guide me through this life.
he was my safety, my compass, my silent wisdom.
it's harder without him.
but i'm still trying.
 i will never stop trying.
 
happy Sunday to you, i hope it's full of peace and serenity.
<3

 


Sunday, February 15, 2015

it builds.....i write.

it's Sunday.
i haven't written for a few weeks.
i can feel it all building up inside me.....all my thoughts, feelings and emotions have been piling up and need a way out.
this is my way of letting them out.
problem is, i don't know exactly what i'm letting out.
there's such a jumbled mixture of 'stuff' inside me that most of the time i can't even pinpoint what it is that i'm feeling.
or thinking.
so how do i let it out??
i'm not really sure.


my first writing assignment for English this semester was to write a memoir paper.
i finished it last week and am going to share it here.
as i wrote the paper, i felt it.
writing this paper was hard at first, but once i let go and just felt it, connected to my emotions and just remembered and let myself feel.... it became a therapeutic release in a way.
i write because it helps.
i write to get it out of my head.
i write because i need to.
in this case i wrote because it was an assignment, but as i gave in and surrendered to my memories, it became so much more.
i'm sharing it here because it's part of my journey, the story of me.

 

He Needs Me

                End-of-life decisions.  Breathe.  Just focus on breathing.  My chest constricts, each inhale a calculated thought.  Every exhale is accompanied by a frantic worry it could be my last chance for air.  Focus.  I put up that familiar wall, a carefully constructed shield of stoicism I have labored painstakingly for years to build, layer by armored layer.  I can do this.  I am his mother; I am strong.  I study my hands so intently, memorizing the slight indentations on my ring.  In two places the silver is bent ever-so-slightly on either side of the infinity symbol that rests delicately on my left index finger.  Infinity… Yes, I can do this.  Slowly I raise my eyes, glancing first to my left and then deliberately around the room, my gaze resting for just a brief moment on each doctor positioned around me.
            This is it.  Six years of unanswered questions, the steady relentless pursuit to discover a diagnosis comes to an abrupt halt on the third floor of the Pediatric Intensive Care Unit. Countless hours, days and weeks spent in this very hospital searching, testing, waiting, prodding, hoping… It has all come down to this moment.  Why am I here?  Why am I sitting here in this room without my son?  It’s a common break-room turned makeshift conference area, the tables pushed together in a feeble attempt to resemble something more official.  A microwave sits on a section of countertop running alongside the back wall.  It’s almost insulting, assembling in this counterfeit space to hear me utter the most gut-wrenching words of my life.  Today is the day I acknowledge the fact that my son isn’t going to live.  Today is the day I say it out loud, to myself and to this room full of doctors—my son is dying, he’s going to die.  In the next few days my son will be dead.
            The room is small.  A faint scent of hospital food, someone’s late afternoon lunch still lingers in the air.  The odor is sweet and tangy, almost offensive.  It reminds me that my appetite doesn’t exist.  A quick flash of anger stirs from somewhere deep inside me.  How could anyone be eating on a day like today?  How is life still moving forward when my son is two rooms away, actively dying? The anger flees as quickly as it was born.  I sit amongst various hospital staff, at least five of them are doctors I have grown to love and respect as care-givers and medical warriors fighting to find answers for my son.  I see it in each of their faces, they know we have lost the fight.  They too are broken, emotions pooling in their eyes, exposing a deep sorrow as they await my declaration of defeat. 
            Do not resuscitate.  How did I get here?  Suddenly I feel trapped.  Panic clenches my throat like a savage wolf seizing its prey, the salmon colored walls close in all around me.  In one quick instant the room becomes a vacuum, the air sucked out by the dire specter before me.  There’s no running from this, denial is futile.  There’s not a drug on earth strong enough to numb me from the brutality of what is to come, from what already is.   Every memory of my sweet boy surges through my veins at once, pulsing with each heartbeat.  Quick and hard.  Quick and hard.  Quick and hard.  My entire body swells in desperation.  I want to run.  I need to get out of here!  A tornado of emotions is dismantling my insides, leaving in its path a wreckage of wounds so deep they won’t be discovered for years to come and yet I sit here motionless, completely still.   Breathe in.  Focus.  You’re his mother.  He needs you. 
            My thoughts travel backward in time, transporting me to just two weeks prior.  I’m sitting on the carpet of my living room floor, my beautiful boy sprawled across my body as I rock him back and forth.  We’ve been in this position for days now, non-stop.  Our bodies intertwined, it is impossible to distinguish where he ends and I begin.  Our souls have always been this way, inexpressibly connected.   Physically, my son is so fragile.  His body is literally shutting down with every valuable moment that passes.  Holding him, I feel our time together is nearing its end.  I’ve been petrified to let this feeling in, to recognize it for what it is---the truth.   
His breathing is labored, frantic and unpredictable.  The struggle for air grows more desperate with each unsuccessful attempt, his effort weakening by the minute. The inevitable is fast approaching, I can feel it in my mother’s soul.  Remarkably, this realization descends upon me the way dusk gently steals away the day.  I stop rocking, for the sheer intensity of my love in this moment is so overpowering it almost consumes me.  He looks at me.  My son, who can’t control his movements and has never uttered a single word, looks at me purposefully and tells me everything I will ever need to know.  He tells me it’s all okay.
            Withdrawal of life support.  Abruptly, I return to the present.  Breathe.  He’s my son.  I can do this.  I’m speaking now.  Mechanically, I answer the doctors’ questions, the somber mood of the room has somehow shifted into a business-like atmosphere.  So many details involved, agonizing choices to be made.  I am articulate and coherent, relying solely on my brain to respond.  My heart remains detached, safeguarded by my invisible fortress, my wall.  I’m making decisions that no mother should have to make, I’m doing it alone.  Thirty years old, I sit by myself and discuss the imminent death of my life’s true soul mate. 
            My composure throughout the entire meeting has not wavered, a strength from somewhere beyond my realm of understanding has buoyed me, has given me the breath in my lungs I so desperately need to get through this.  I am strong, I am doing it.  I’m breathing, I’m still breathing.  And then she touches my arm.  A simple gesture from the doctor sitting closest to me, just a brief squeeze right below my elbow, and I completely lose it.  My wall comes crumbling down so fast I’m sure the whole hospital can feel the impact of the collapse.  Exposed, my heart feels everything all at once.  Six years of raw emotions, cautiously kept at bay, now spill from my heart like water through a burst dam.  My son is dying!  He’s not going to live.  I want him to live!  I can’t save him.  I’m his mother and I can’t save him.  I just want to save him. 
 The meeting is over.  People excuse themselves as I quietly weep, my body slowly embracing the sobs, almost like a soulful dance.  I accept this dance, embrace the rhythm as it whispers soothing words of comfort to the very depths of my being.  I wipe away the tears that slide down my face and look around me. The room suddenly feels so starkly empty and I know exactly where I need to be.  I stand, battered and bruised but not broken.  I am his mother.  I quietly leave the room and walk steadfastly down the hallway towards my strength, my son.  He needs me. 




Happy Sunday to each of you.
<3

Sunday, February 1, 2015

papa's birthday and other ramblings.

happy Sunday.
it's been a good day, a special day.
it's Papa's birthday today, and the best part is he's here with us to celebrate!
we love Papa.


my dad {my person} is the best.
so strong, so calming, so everything good.
i love it when he's here with us.
it makes me feel so much more grounded, safe, comforted.


i'm stressed, most days.
i'm lonely a lot.
i'm anxious and worried and fearful about most things.
i just am.

but i'm discovering that i have a ton of potential that i'm just now tapping into.
i'm embarking upon a whole new aspect of life, i'm experiencing things i never thought i would or would have to experience, for that matter.
it scares the crap out of me.

but i'm not turning around, i'm not running from any of it {some days i really want to turn and run}.
i'm feeling it out.
i'm working on letting the fear sink in and transform itself into something bigger, better....something new and good and less scary.

it's a work in progress.
i'm a work in progress.
i'm working on progressing.
i'm missing my beautiful boy.
my beautiful boy is missing from this new aspect of my life and that's hard.
i want him to be a part of it all, physically.
i want him with me.
i miss him.

i'm working on me.
myself---who am i?
i'm trying to find that out, trying to introduce me to myself with tenderness instead of criticism.
trying not to judge myself....who am i to judge anyway?
i'm working on it.


for today i'm trying to savor the moment and enjoy the love that is all around me.
there is so much love.

 
happy {Papa's Birthday} Sunday to all of you.
<3