Saturday, January 23, 2016

25 months

25 months today.
i'm still using "months" instead of years.
i say 25 months because i try to trick my brain into believing it hasn't been over 2 years.
2 years and 1 month seems painful, unbearable.
over 2 years is awful!  
2 years without holding my son is incomprehensible.

25 months.
i say it to try and trick my brain......but my heart already knows.
my heart is the timekeeper that won't let me forget.
my heart counts every second, every hour without him and then multiplies it by thousands.
2 years?  25 months?  an eternity??
to my heart, they're all the same.

someone recently said to me, "Grieving for this long isn't exactly a good idea". 
i see.

does grief go away?
is grief something you "just do" and then when all the criteria are met, it just "goes away"??
will grief suddenly just up and leave one day when it feels like i've cried enough tears, looked through his pictures enough, smelled his blankets and clothes just the right amount of times...??  will it leave when i've visited the cemetery enough or told the story of his life and death a certain number of times???  is there some date on the calendar that i should have had circled, knowing that it was the day that grief and i would part ways??

does grief go away?

grief doesn't just go away.
 at least not for me.  not for my heart, my brain.
grief isn't something i'm going to "do for a while"....grief just is.

grief is a part of me now.
grief changes, it ebbs and flows with time.
at first, grief was numbness.  
an inherent body-wide numbness that served as armor to protect me in the hours/days/weeks after my sweet boy died. this numbness was crucial for my survival at those times, for i know that my mother's heart could not have born the reality of my child's death without the sweet mask of numbness that surrounded it.  the body's ability to preserve and protect itself is a wondrous thing.

when the numbness wore off, grief quickly and abruptly turned into raw horror.
fits of crying, sobbing..... the gut-wrenching wails that were released from my throat were almost inhuman.  these sounds could not be coming from me------except that they were.
the horror of waking up each morning, and remembering all over again that my son is gone.  he's dead.  he's not in the next room over, waiting for mommy to come suction him.  he's gone, i buried him, remember??  i don't hear him because he's not there!  i won't ever get to hold him or smell him or touch is sweet face again....because he's gone!! 

the rawness of grief slowly and quietly turns into something less harsh, more familiar.
there is a tenderness now where the rawness used to be.  like a painful bruise, tender to the touch.  certain smells, sounds, songs on the radio, or even a flash of a memory i can't quite capture: these all bump into grief's tenderness and the tears will flow.  walking down the aisle of a grocery store, i'll catch the glimpse of a little boy's blue eyes and have to quickly walk myself out to the parking lot so i can break down in the comfort of my own van.  in the van, i'll turn back and see his carseat sill in the same spot it was 25 months ago and the rawness of my grief will come raging through again.

grief doesn't have rules or a handbook to follow.
there's no rhyme or reason to the things i feel most days.
some days grief is like a gentle friend, one that stays with me, silent and still, not wanting to draw attention to itself, but still nudging me to make sure i know it's there. 

 other days grief grabs hold of me and won't let go.  it sits on my chest and clenches my throat so hard i can't breathe.  i can't remember how to breathe because grief has taken hold of my mind and my heart and the only thing i can possibly think of is how much i miss him and want him back!  i just want him to come back and i can't breathe because i can't think!  i can't understand how he's not with me; why isn't he here in my arms and why can't i breathe??!!

grief is in me.
it is me.
i understand and fully accept that grief will always be a part of me.
i am not under the false impression that grief is something i'll check off a list and be done with.
my word, i wouldn't even want that!
grief is with me because my son is not.
i am a mother who lost one of her children and i will never "get over it".
nor would i want to.

i miss him because i love him.
i grieve because he died and he was my soul mate.
 grief continues because i am continuing.

it is my job now to figure out how grief and i can coexist.  i won't push it away, but will try everything in my power to balance the rawness with the tender grief.  i will understand and let myself crumble on the days where i can't contain it.  i'll move forward with the knowledge that grief isn't a terrible thing, no matter what anyone's opinion is.
there is no timeline for grief.

grief is different for everyone.
my grief is unique to me.
it is mine.

i am doing my best.
two years and one month ago my son died.
it's been a hard 25 months, but i am still here.
bear with me.

Saturday, January 2, 2016


So, here's the thing.
my son died 2 years ago.
2 years ago he died and i was left here, without him.....lost and broken, for the most part.

i've been lost.
i still am.
i came home without him and life kept moving forward...i had no choice but to shuffle along with it.
i made myself put one foot in front of the other; sometimes i didn't.
some days i laid on the floor and refused to acknowledge any of it.
some days i still do that.
most days that's all i can do, or all i want to do.

to the outside world, to those who know nothing about me or my must appear that i'm an ordinary person.  a mother of one child, a beautiful girl, who they see me with.  a single mom who is trying to better herself, to find a career.
i'm sure people at school see me, on campus, and assume that i'm just another student.
a stressed out, overly anxious college student just like everyone else.  (well, maybe more stressed and anxious than most..)

 i laugh.
i smile.
i'm still as sarcastic as ever.

to the outside world, i'm just an everyday girl.

the thing is, on the inside.....inside my world, my head, my life.....there's so much more going on.
so much more of everything.
so much more. 

i may appear to be "moving on".....and i am...i mean, in some respects i am.
i'm going to school, i'm searching for a way to better myself and Aubrey's lives.
i'm living....each day i'm breathing and waking up and putting one foot in front of the other.
i'm trying.
i've been trying.

but then there are some things i haven't been able to do.
there are things that i've tried to do and haven't been able to do just yet.

this week i did one of those things.

let me explain..
 during my beautiful boy's life, he was either in my arms or right beside me on the floor of the living room.  when i wasn't holding him, he was laying on the floor, right beside me in a makeshift bed that was permanently assembled right in the middle of the living room floor.
almost every picture i have of him was taken with him safe in my arms or lying on this "bed"...

it was a permanent fixture in our house, like a worn piece of furniture.
when he died, when i came home from the hospital without my baby boy, the first place i went to was to his bed....his spot.  i laid there and wished he was here instead of these stupid blankets and pillows.  i wanted him to be there and yet all i had was the empty space where his beautiful body used to lay.
every day for weeks i would lay there and try to see if i could still smell him....i just wanted to smell him one more time, for my arms to stop feeling so empty and for the memories to stay fresh and not fade away.

when my sweet girl couldn't be consoled, when she was too sad to express anything other than tears for her little brother's death, this was where she came for comfort.

she held her baby brother here.
she played with him and gave him kisses here.
he was her prince and she was the princess, here in this very spot.

this was his spot.
well, it was all of ours really.

i thought i would move it, his bed.
i thought, after the funeral, I'll move it.
but i didn't.

i would clean the room and move it to vacuum.
maybe this time i won't put it back...maybe this time i'll actually move it.
but i never would.

when the one year mark of his death was approaching...
i'll move it then, on the 23rd.  on the one year anniversary of his death, i'll surely move it.
but i couldn't.

Aubrey would ask me, "when are we going to move Connie's bed?"
honestly, i didn't know.
i couldn't tell her because i didn't know.
i got rid of the pillows surrounding it, made it smaller, in a way.
but i still couldn't remove it completely.

his bed stayed, in the middle of the living room floor.
i would put my school books on it, studied on the floor next to it.

i still sit on the floor 90% of the time.
i never sat on the couch when my son was here because i needed to be near him.  he needed me there.
there are things i still can't do, or haven't been able to do yet.

his meds are still in the fridge, untouched and unmoved.
his carseat is still in the van.

the hangtag still hangs.... almost 2 years expired.

his coats still hang on the coat rack downstairs.
i haven't been able to bring myself to go through his room.

his drawers remain untouched, clothes hanging out the way they were weeks before he died.
i go in there every so often to try and catch a hint of his scent...but i never can, i never do.

these are things i still can't do.
these are things that no one in the outside world would ever know about me, just by looking.

i started telling Aubrey we'd move his bed in the living room "maybe when we get new floors".
i told her this, thinking it wouldn't ever really happen.
not soon, at least.

my dad came out for Christmas this year and sped up this reality.
i knew he was coming and i knew he planned to redo my living room floors.
i knew this.
but i still didn't really think it would happen.

here's the thing with me.
i feel like i'm a semi-intelligent being.
intellectually, i know that not moving his bed won't bring him back.
i know that moving it won't erase his memory or mean that i will forget him.
intellectually, i know all of this.

but sometimes i feel like my heart is a complete moron.
my heart is the one who tells me that keeping his bed means i don't have to acknowledge that he's really gone.
it's my heart that makes me believe that moving it means i'm betraying him in some way....i'm moving on and moving on means i'll surely forget everything i ever knew.
 i don't want to forget anything about my son!

i'm stuck, in that way.
it's the inside parts of me that don't want to let go of anything he touched, anything that reminds me of him and the life i knew and loved.
it's the inside parts of me that are terrified to let go!

a week ago, my dad was here and i moved his bed.
i moved his bed because the carpet and floor underneath it were ripped up to make way for new flooring.
i moved it because i had to, i just had to.
it was terrifying for me.
making room for new things that my son will never have touched, will never be a part of.

i moved it and it was hard.

i didn't think i could.
i surely wasn't ready.
i don't think i would have ever been ready.

i moved it and i thought the lack of it would consume me....i was afraid i'd run and move it right back the second my dad left.

i didn't.
i won't.

it's different now.
my dad and brother in law put in the new floors and i am learning a new way to live without it.
it's okay.

the floor is different and it's okay.
his bed is not here and i'm okay.
i miss him and wish he was here instead of new floors, but i have to learn to be okay.
i am learning, i am trying.
i'm still petrified that i'll forget everything, that it will be as if it never even happened..
it's such an empty feeling for me to realize that anyone i ever meet from now on will never have known him, my son.  i fear that no one will ever really know me because they won't know him.

these are my fears.
i have a lot of them.
i am transforming, no matter how hard i resist or how many times i try and fail.

my son is part of me, no matter how much i change or grow.
remind me of this, when the fears get too loud......yes?

Wednesday, December 23, 2015

two years

two years.
oh, my heart.

i haven't been writing much lately........i think it's because i've been trying my hardest to avoid my feelings.  i can't write and not feel things..  so i've tried running from it all.  if i don't stop to write and acknowledge the feelings.....they're not there.... right?
so wrong.

i can't run from something that's already inside me.  there's an emptiness inside me so deep and there's no way to run from it.
it's there.
it's in me and i can't escape it.
i can try to fill it with things (i do try).  the problem is, the emptiness is big---it's all encompassing and the things i try to fill it with are insignificant in comparison.
but i do try.

it's been two years since my beautiful boy died.
i don't even know what that means because time stopped making sense the second he left me.
two years....two eternity?
they all seem the same to my heart.

i've spent this year trying to find purpose.
trying to find my purpose.
with my son, everything i did was purposeful.  every single thing i did for him was filled with purpose.  he relied on me for everything; every second of his entire life he needed me.
and oh, i needed him.

my life was altered drastically the moment he left me.
to go from such a purpose-driven role as a caretaker to a son who relied solely on me for everything to now a mother of just one sweet girl who needs me in completely different ways has been baffling for my heart to comprehend.

most days i have no clue what i'm doing.
i walk around feeling lost, not knowing if i'm moving at all, let alone in the right direction.
there's a constant battle going on inside my head and in my heart.
an internal dialogue plagues me every day.

my brain tells me:
I can't do this.  I can't.  I can't do this anymore.  I can't, it's not possible.  I can't do this anymore!  I don't want to do this, i can't do it.  I can't!  I can't do it anymore. 

then my heart chimes in:
I can't do this...  You can do this.  I can't do this anymore...  You can.  I can't!  You can!  It's not possible... It IS possible.  I can't do this, I can't...I don't want to do this anymore.... You can do this, you can!
  YOU HAVE TO. can.

but can i?
am i??

the battle is never-ending, it seems.
tears fall unexpectedly as i'm walking through the store or aimlessly about campus.
i'm fighting my head with my own heart and there never seems to be a true winner.

the victory is that i'm still here, still trying.
the triumph lies within my sweet girl and the happiness she brings me.
love will always win, and i am surrounded by it.
the trick is for me to let it in and not be afraid of the other feelings that come with it. 

my son died and that's horrific.
he died and it broke me into a million pieces that i'm still searching to find, attempting to put back together.
my son is gone and my life will never be the same.
 it's not the same and i miss him.
it's been two years and i just miss him.
i love him and i'm trying to find my purpose.

i wrote something the other day...a poem of sorts.  it was more just me, spilling out my feelings onto paper, trying to connect with things inside of me.. trying to make sense of my heart, my life now and the death of my son.

two years without my soul mate, my beautiful boy..
i really miss him.
here are my words:

The pieces of me are shattered
I lay broken on the floor
Remnants of a girl;
I don't know me anymore

He was my very soul
With him I was complete
Stumbling, I crawl
But can I stand on my own two feet?

I used to breathe him in
Now my lungs won't fill with air
Gasping, I see my reflection;
There's beauty in my stare

His eyes are etched in mine
Blue waves so deep I'll drown
His light will never leave me
  Though lost, I can still be found

It was Death that stole him from me
But dying brought him peace
My arms clung to his body
As I felt his soul's release

But No!  I wasn't ready!
I still need him here with me!
Sweet boy, mommy's trying..
To comprehend you're finally free

Your heart still beats in mine
A familiar rhythm that I know
Pulsing words right through me
Oh mom, I had to go..

Blindly, I reach out for you
With clarity you grasp my hand
My pieces might be broken,
But with strength in you I'll stand

 oh Connor, mommy loves you.

i'll keep trying, i promise.
love you buddy boo..

Sunday, August 30, 2015

life unanswered.

i started writing this blog because i wanted to share my story----our story.  the story of a beautiful little boy who may have been a mystery to the medical world, but to me.....oh, to me he was everything true and sure and good about this life.
i searched.
  i fought. 
i dug.  
i researched until there was no more medical data for me to look at.  there were no more paths for me to go down because i didn't have any more directions to follow.  i was just trying to save him!  i was trying to find a way to save my son's life, my precious baby boy.  
i wanted to know what it was.
  i needed to discover what was slowly stealing him from me.  this was my job!  i'm his mother and it's my whole life's purpose to protect my children.  every moment that passed without answers was like an agonizing tick of a time bomb.  i knew it was going to go off, it was all going to explode if i couldn't find the answers.  BUT WHERE WERE THEY??  sometimes if i closed my eyes and tried hard enough, i could convince myself that none of it was real.....he's just fine, they can't tell me what it is because it's nothing!!  there's NOTHING wrong with him!  these milestones he's missing aren't important anyway, he can always catch up!  he WILL catch up!!  he's not hurting, or suffering.  those sad little noises he's making have nothing to do with his brain shutting down and his body failing him.   he's not getting worse...these aren't new symptoms of some godawful disease that is robbing my son of his life!!  his breathing will be okay, it will get better.  it has to get better!  it all doesn't make sense because it's not really happening!!  he's not turning blue, i'm just imagining it. he'll be okay in a second,  he's NOT dying...he'll LIVE! son can still live because it's all okay and none of this is happeningit CAN'T be happening because i need him to live.  i just want him to live.. i NEED him.......

i wanted so badly for none of it to be real.
but it was.
it is.
it's real and it happened and now he's gone.
he died.
my son died and i never found out the name of what took him from me.
i have no clue what to call the disease that stole my beautiful boy right out of my arms.
i still try and search but i have even less direction now than i did before.
i'll never stop looking.
 i cannot describe to you the empty feeling that the 'not knowing' brings.
there are many days where i feel like i failed him.
it was my job to protect him and i couldn't do it.  i tried so hard but somewhere out there are the answers i could not find.  they are out there and i didn't get to them in time.  and maybe i'll never find them, maybe i'll never know.  but i just feel like i should have been able to.  i knew him better than anyone else on this planet and i couldn't find the answers he needed.

i really just miss him.
there aren't any words to describe that missing feeling that's deep inside my soul.
it's too big, too raw, too real.

i love my son.
i will keep fighting for answers in this life because his life mattered.
i'm trying to go on.  to live and love and find happiness and joy.
i will.
i do.
i come across these things and i choose to let as much of it in as i can.
i'm working on it, i'm trying, and i 'll never stop fighting.

happy Sunday to all of you.

Sunday, August 2, 2015

trying to heal

i haven't written in so long..
i feel like my heart needs me to write.

how am i doing?
alrightish, i guess.

aubrey and i had a chance to go {home} to Illinois a couple weeks back this summer.
it was a relaxing, peaceful vacation.
there were days and conversations that helped fill an empty spot that has been growing in my soul.  i grieved the loss of a perfect little girl---sweet Mabel, and in doing so felt closer to my beautiful boy than i have in a long while.  

sitting with my dear friend, Mabel's mom, talking and just being made my heart feel more at peace than i have in months.

i watched Aubrey and Mabel's sister connect and bond in a way i can't fully understand.  there was an unspoken knowing between them, two sisters who have lost their special little brother/sister, a knowing that will never need to be explained with words. 

 it was like a weight had been lifted from my heart, seeing that my sweet girl has someone who knows her hurt and can relate in a way that i can't.

  a piece of me was healed on this trip.  as i grieved for this special little girl, i could feel her love and light bring healing to my soul. 

being at home, my home, surrounded by all my familiar things made breathing a little bit easier that week.  driving around aimlessly on my old country roads was like therapy for my overactive mind.

i let myself slow down enough to actually think and feel.  i let myself tap into the feelings i normally try so hard to keep at arms length so i can get through the day.
when i let myself really feel, i'm always afraid i'll fall so completely apart that there will be no putting myself back together.  when i really think about my beautiful boy, the feelings and emotions are so overwhelming that i can't breathe and it feels like i might actually die.

i took a little walk out in my dad's backyard and ended up at the spot Aubrey, Connor and i had our pictures taken just 2 summers ago. 

 i walked down and the light was breathtaking----so perfectly blue, so perfectly him.
 the memory of that summer 2 years ago is so good, yet oh so hard at the same time.  this was my sweet boy's last summer spent in Illinois. this was the summer his breathing took a horrible turn for the worse---it happened in Illinois and i remember the moment i realized it.  the awful "new" noise he made from his carseat as i was driving to a friend's bbq.  that terrifying high pitched noise he made as he gasped for air while his trachea was collapsing.  5 months after this summer vacation 2 years ago, my son was dying in the hospital.

these thoughts and memories came flooding in but i felt them and i didn't drown.  
i felt them and i was still standing, breathing through the pain.

i try not to feel things because it hurts, but when i do let myself feel... i feel him so incredibly close that all the pain is worth it for that brief moment of beauty.

i'm searching for balance in my life, always.
i feel like i fail miserably most days.
i want to be fully present in my life, but i can't help but want to go back.  sometimes i want him back so badly that i almost convince myself that it could happen!
i want to change and grow into a woman who is confident and happy but i'm so afraid to let go of who i was because that's the only me who knew my son.
i want to be successful but i'm so terrified of failure that i'd almost rather not try.
i want to do things that matter, to help as many people as i can in this life but i worry that i'm so broken i'll do more damage than good.
i want to find someone to love and who will love me back but i fear that person will never really know me because they never knew him.
i was my best self when i was with him and i'm trying so hard to figure out who i am now.

all these things---i'm trying.
it's hard but i won't stop trying.

happy Sunday to you.

Sunday, June 21, 2015

my person.

Father's Day.
i'm going to tell you a little bit about the best man i know----my dad.

there are people in this life who shape you, help mold you into the person you are trying to become.  my dad has been that person for me my whole life.  i can never remember a time where i didn't look up to him, where i didn't want to be more like him.

my dad is my hero.
and not because he's strong and manly and all-powerful (ok, he's pretty much those things too, don't get me wrong).
  he's my hero because he's good.
in every way that counts, my dad is a good man.

my dad is kind.
there is a kindness about my dad's heart that i've watched and observed since i was a little girl.  i always knew that if someone needed help my dad would be right there willing to give it.  i learned to love and appreciate the gift of service through watching my dad give of himself so freely, needing absolutely nothing in return.  i was little, but i could see and understand that the pure love that came from giving was far greater than any amount of money or reward.

my dad is wise.
to me, my dad was always the smartest person in the world. (sometimes tied with my brother)
he fostered a love (okay, sometimes love/hate) and respect for learning and knowledge that i still appreciate to this day.  he pushed me to do my best, to reach a potential that i wasn't even aware i was capable of striving for.  he always told me i could do anything, be anything i wanted to.....if i just worked hard for it.  even now, when i'm freaking out the night before a test, i call my dad and he reminds me that i'll be fine.  just do my best and that'll be enough.  (i tend to not believe him....but i'm working on it)
beyond all the intelligence and book smarts though, is an even greater amount of wisdom that i am continually seeking to understand.  i go to my dad for advice because i trust in what he has to say.  i know for absolute certainty that he will never lead me in the wrong direction.

my dad is patient.
oh, my heart is he patient.  there's no better way to put it than to say i've dragged my dad through hell and back.  you see, i was in a dark place for a very long time.  when i hit my teenage years in fell into a deep dark hole that i wouldn't be able to pull myself out of for nearly 10 years.  i hated myself.  i hated everything about me and especially hated feeling anything.  so i did everything i could to not feel.  in order to do that i had to stop caring, and in the process i changed.  my dad was there through it all.  he tried to help in every way he possibly could, but i was in such a dark place that it became impossible.  i wasn't really there.  i was mean.  i was cold.  i didn't want anyone caring about me because i didn't think i deserved it.  i didn't want to live anymore and i almost made that come true more than a couple times.  i can't imagine the pain my dad must have felt, watching me actively trying to die.  i regret more than anything else the pain i put him through.  if i could take that back.....oh, believe me, i would.  he never left me though.  even though i pushed him away every chance i got, i knew he was there and that i needed him.  he somehow knew i would eventually find my way, and he was right there waiting for me with open arms when that time came.  i can honestly say i wouldn't be here today if it wasn't for my dad's steadfast love and faith in me.  he believed in me when i gave him every reason not to.  he is always there.

my dad is fun.
we have similar senses of humor, my dad and i.  being around him makes me laugh.  if you've ever been through a drive-through or a checkout lane with my dad, you'd know what i mean.  my dad knows when to take life seriously and when you just need a good laugh.  i can always count on him to make me smile, no matter what.  even at my beautiful boy's funeral and sitting beside his hospital bed in the days preceding his death, my dad and i found a way to laugh through the pain.  i'll forever be grateful for our inside jokes that allowed me to breathe, if only for just a minute as i was going through the hardest moments of my life.
 aside from being funny, my dad has fun.  to see him and aubrey together is to know what pure joy looks like.  they giggle together like something i've never heard before!  they are silly and i love watching the two of them together.  he's like that with all his grandkids and he was like that with my brother and sister and i growing up.  he plays.  he's like a big grown-up kid at heart.  i hope he always stays that way.

my dad is my comfort.
the minute i found out there was something "not right" with my beautiful boy my dad was in my corner, willing to do whatever it took to help me find the answers i was so desperately searching for.  on two separate occasions my dad accompanied me to different hospitals around the country in hopes of finding a doctor that could help my sweet boy.  he saw the pain and suffering Connor was enduring and i know it broke his heart.  our last trip to New York was a long shot.  i sought out the top neurologist in the nation for diseases of the basal ganglia and i was secretly hanging all my hopes on this one visit.  i sensed that my dad knew the outcome this trip would bring and i love him so much for taking us anyway.  he was there to hug me as we left that day, knowing how devastated my heart was that the answers i wanted i was never going to get.  he knew that i knew my sweet boy was dying and if it hadn't been for him i think i would have crumbled that day.

my dad is my rock.
as i've mentioned before, my dad has been through it all with me.  no matter where i was or what kind of trouble or darkness i was in, i knew my dad was there.  a constant reminder that i was loved and that his love would never go away.  i've relied on that strength more than ever these past few years.  as my beautiful boy was dying and in the months following his death i have needed that strength.  i've needed it like i need air to breathe.  when i forget how to breathe i call my dad and he finds a way to talk me through it, to remind me.  when i don't think i can possibly live one more second with this pain, this ache in my soul where my son used to be.....i call my dad and he strengthens me.  just his voice and the love i can feel through the phone gets me through.  i need him.

my dad is my person.
he's the best man i know.
he eats raisins by the cheekful and makes the best cinnamon rolls (Parry rolls) in the world.
he'll play a mean game of Scrabble but refuses a rematch in Othello due to my undefeated record:)
he tells the best bedtime stories a kid could ask for.
he supports me in everything i do and i want nothing more than to be like him.
aubrey told me i needed to find a husband and when i do, "he needs to be smart and funny and make mac and cheese just like Papa."

my dad has two phrases he's always told me, words of wisdom to live by:
1. Do the right thing
2. Don't be a dumbass

happy Father's day to all the fathers out there and especially to my dad.
love you daddy.