Sunday, April 19, 2015

i'm okay....ish.

people ask me all the time, "How are you doing?"
"How's it going?"
"Are you doing okay?"

i never really know how to answer.
I'm alright-ish.
I'm hanging in there... ish.
I'm okay-ish.

i always add the ish.
i don't feel fully alright or okay.
the ish explains the rest.
i don't know that i'll ever feel okay.  i don't even know what that means anymore.

i need to give up trying to reach that feeling of "okay" and nurture where i'm at right now.
i'm not okay.
but i am alright with that.
i'm here.
and i'm still trying.
my son is gone and that's never going to be okay.
it's just something i'm learning to accept and live with.
that's the hard part.

finding joy along the way certainly helps.
my sweet girl bringing me a surprise bouquet of flowers from the yard "just cause they're pretty and she loves me" helps.
having a dad (my person) who i can call no matter what time day or night helps.
having friends who love me for me, despite all my messy parts helps.
experiencing small victories at school and overcoming personal challenges and struggles in the midst of fear and worry helps.
closing my eyes and remembering my beautiful boy's sweet noises and how he felt cradled in my lap helps.
oh my heart it helps.

 i miss him.
lately the ache seems to be magnified.
i'm not okay without my beautiful boy.
but i am trying.
i am still living, and loving.
i'm grateful for the love and support i feel from people in my life, near and far.
i am so very grateful for that.
no ish.

happy Sunday to you.

Sunday, April 12, 2015

my heart.


i need to write to get out of my head.
i wish i could take a break from my mind sometimes.
a good long vacation from my thoughts.
that would be nice.

or if my feelings could just steer clear of my heart for a while, that would also be fantastic.
i've been learning about the human heart in my Anatomy class.  i've held the real thing in my very hands in various labs.  i've studied all its parts and how it works and what keeps it going.
nowhere in any of my studies has it explained to me how or why the hell my heart can HURT so much when it's inside my body, doing all the things it's supposed to be doing.

blood is still pumping and flowing through all the right chambers.
my heart is still contracting and relaxing when it needs to.
it's still receiving and sending blood throughout my body......
but how can it be doing all this when THERE'S A GIANT HOLE IN IT????
 and if there's not an actual hole in it, then why does it HURT so badly??
i just don't understand.
where does the ache come from?
what causes me to forget how to breathe?
why am i able to handle it sometimes, and then be completely leveled by the pain at other times?
last night i was leveled.
there are some nights where it just becomes too BIG, the ache.
i'm trying so hard.
i don't want to be sad all the time.
i'm not.
i promise you, i'm not.
i'm not depressed, it just hurts.
i'm still happy, it just hurts.
i laugh.  i smile.  i have fun!
it just hurts. 
i don't understand my heart.
how it can love so deeply and feel so broken at the same time.
how can it hold SO MUCH goodness, yet be so empty?
why does it continue to wish for things that cannot be?

i just don't understand.

i'll keep trying.
i'm certain of that.

happy Sunday to all of you.
thanks for listening to my heart.

Sunday, March 29, 2015

this week i broke.

i haven't written for a while.
i've been wanting to write but every time i sit down to pour out my heart, my head seems to get in the way.
i have so much going on in both my heart and my head.....letting it out is the tricky part.
it's tricky because i'm not sure what it really is.
a jumbled mess of feelings---


i let it all build up and this week it kind of exploded on me.
i've been holding it in for awhile now with no release.
i think i've been avoiding my feelings, no---i'm sure i have.
if i keep myself busy and distracted enough, i don't have time to focus on the hard stuff.  i know it's there but i don't let myself be still long enough to really feel it.
pretty sure this is typical avoidance.

this week i broke.
studying for a math test set me off.
i had to be still, i was studying and needed my mind to concentrate.
forcing myself to be still and focus on the problems before me also opened the gates for everything else to come rushing through.
and boy did it ever!
i hadn't cried so hard in a while, i felt that familiar panic start to rise up and breathing became impossible.
i did what i usually do when the fear becomes too big and i don't know if i can make it---
i called my dad.
 my person.
he helps to remind me that i'm okay, i'm still here, i don't need to be perfect.  the pressure i put upon myself about school and everything else is something i'm doing, and i need to ease up.
somehow i need to find a balance for myself.
i've been searching for ways to do that for nearly my whole life.
more than anything, i struggle with myself.
i always have.
it's something i'm trying to figure out and understand.
it makes me miss my son so incredibly much.
i felt most comfortable with myself and who i am when i was caring for my beautiful boy.
i accepted myself more then because my son and i were so intertwined that to hate anything about myself would be like hating something about him.
and i just loved him.
i loved everything i did for him.
i miss him.
 i miss me with him.
i'm searching for acceptance.
sometimes i think i find bits and pieces.  i'm trying to save those in hopes that one day i'll be able to piece them together to form something real and strong and unbreakable.
i'm hoping.
i'm searching.
i'm trying.
i'm always trying.
happy Sunday to you.

Sunday, March 15, 2015

things that matter

oh, it's Sunday.
i haven't written for a couple weeks..
i need to write.

school has been really busy.  i've been putting my all into studying, trying to learn and grow.  i find myself so interested in the things i'm working with, especially in my Anatomy class and Lab.  every week i go and it feels like i can't get enough knowledge---i'm trying to find ways to cram it all in and yet i still find myself wanting more.

i had a moment in my Anatomy Lab where i was standing by myself in the back of the room, holding a human brain, staring at the parts of this brain that were supposedly shrinking the most on my sweet boy.....i stood there and stared and stared and had such a strong wave of feelings come over me that i had to hurry and leave the room because i felt myself about to completely lose it.
i couldn't breathe and i had to get out before i fell to pieces in front of a room full of students.
i left, found a stall in the bathroom and tried to remember how to breathe.

the feelings i was having, they were so forceful and strong and looking back i've been able to pinpoint what those feelings were.
  1.    i just missed my son!  the ache is always there, but sometimes there are moments where it feels like it's hitting me all over again.  it feels like he was just here, or that he's just in the other room and i need to get to him, he needs me to come get him!  and then like a ton of bricks hitting me right in the stomach, i remember.  i remember that he's not here and that's why i'm standing in this lab, and not at home with him instead.
  2.   i wanted answers!!  i stood there holding this brain, staring at the exact structures and parts that were failing my son and it's like i wanted them to speak to me!  i had the insane notion that if i stood there long enough, if i somehow stared at it long enough or looked at it from the right angle, it would give me the answers i'm so desperately seeking.  like the diagnosis would just become miraculously clear as i was holding it.   i stood for such a long time staring......... searching.......... waiting......................
  3.   when i realized what i was doing----standing with a brain in my hands, waiting for it to speak to me----i felt such an overwhelming sense of absurdity and frustration that i couldn't handle it any longer.  tears started coming and i knew if i let them flow they wouldn't stop.  so i left.  i got out.  i stood in a bathroom stall, clenching and unclenching my fists and tried to remember how to breathe.
i want to find answers.
i don't know what that means, really.
i want my life, my life moving forward, to mean something.
i didn't find answers for my beautiful boy, i don't know that i ever will.
that's a hard truth to deal with.
but i want to keep trying.
i want to keep searching..... and who knows, maybe somewhere in that search i'll find answers for some other family, some other mother who's HOPE is still there, who's faith has not been shattered by question after unanswered question.  maybe i can give light to someone stumbling in the dark, provide a beacon for just one person who feels lost in the abyss.
maybe i won't find any answers, maybe the answers i'm seeking don't even exist.........
but it's the trying, the searching, the purpose that i need.
i need to be doing things that matter.
i want to do things that matter.
i want to matter.
i'm trying.
oh my heart, am i trying.

happy Sunday to you.


Sunday, March 1, 2015

real happy.

happy Sunday.

i've been thinking about "happiness" lately.
what is it?
what does it really mean?
do i feel it?
or more importantly why don't i allow myself to feel it?

someone asked me this week if i was afraid to be happy---if i felt guilt for being happy.
yes, i think.
it really made me think about things, about myself and my life and my struggles within.
i'm not sure why i place restrictions or conditions on the good feelings i have and give free reign to the ones that seek to do harm, the ones i should be cautious of.
i feel like i've always been this way.
but why?
i'm not really sure.
i'm still trying to figure stuff out---a work in progress, always.
i just know that i have been truly happy.
i have felt true joy and happiness.
i still do feel it.
 i'm just learning different ways to recognize, appreciate and let it in.
my son made me happy.
oh my heart, did he make me happy!

taking care of his every need gave me such a wonderful sense of purpose and belonging and i'll never be able to replace that feeling.
i feel happiest when i'm doing something worthwhile.
i miss taking care of my beautiful boy more than i can ever describe.  my purpose in life has been shifted, and i don't know exactly what it is or how to nurture the change.
i'm working on it.
my sweet girl makes me happy.
she is such a happy child, a resilient little girl that brings so much light to my life.
she makes me giggle.
i watch her and know that the feeling i have inside is pure happiness.
i feel happy, still.
i just feel other things along with it, i've realized.
i let guilt creep in alongside the happy.
i'm trying to figure out why i do that, why my feelings work that way.
i'm working on a lot of things.
happiness is more than a feeling.
happiness, for me, is so many other things.
love, peace, security, comfort, safety, silliness, laughter, easiness......these are all wrapped up in happiness. 
i'm striving to let myself feel these things more freely, without limitations or restrictions, without consequences.
i'm trying harder to just be......and be okay with it.
i'm always trying.
happy Sunday to you.
real happy.

Sunday, February 22, 2015

it will find me.

fancy-pants picture time happened today.
it's been a long time since i've taken fancy-pants'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.


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.