Sunday, October 29, 2017

The Last Days {by Aubrey}

oh, my heart.
Aubrey had an assignment at school, to write an autobiographical sketch.
she brought home her finished paper and gave it to me.
oh, my heart.

her words, her feelings, her emotions...broke my heart and made me so incredibly proud to be her mother at the same time.

she wrote about the final days of her brother's life.
her Connie.
reading her words brought me to a place i had never been before.
i lived my beautiful boy's death.
i lived it with him.  24 hours a day, in the hospital, by his side.
 to see those days through her eyes....
i had no idea some of the things she focused on and remembered.
i had an idea what she must be going through, but really, how could i?  i wasn't in her shoes.  i wasn't losing a brother, watching my mom go through the most awful things imaginable.
i wasn't her.

with her permission, i am sharing her words, her feelings here:
{i am so proud of her}

The Last Days
By: Aubrey fail 

"How many more days till Christmas?" I asked eagerly.  "5," my grandpa replied with a chuckle.  I was so tired of driving back and forth to my house and the hospital in the cold, but I couldn't wait to see my mom and brother every time.
I knew it was happening.  Everyone kept sobbing and saying, "It's ok" and "you WERE a great sister."  I knew what was happening yet I was very confused.

As we got to the hospital, I was so relieved to be out of the nose biting cold.  As I was warming up my frosty hands, my mother came in eager to put her warm arms around me to give me a hug.  I watched as her red-ringed eyes were being healed by my comforting hug.

My mother was always very strong, but at this time it's like a river of tears waiting to stream down her face at any moment.

When we got to the room my brother was staying in, I bolted across the room to hug him but I had to be careful because there seemed to be an octopus of wires surrounding him.

When it started to get dark, I had dinner with my mom for the first time in a long time.  As I was stuffing fries in my face, I saw that my mom was not stuffing fries in her face nor eating them at all.  I think she's just worried about my brother.  Maybe overly worried?

I knew this was the last night with my brother so I asked if I could be the doctor for the night.  The nurse was generous enough to let me be the doctor.  I was so grateful.  As I was squirting my brother's medicine into his GJ tube, that smelled like a cross between baby spit-up and pee, sure enough it squirted all over me.  I had to wear his pants, luckily we were the same size even though we are a year apart!

As me and my grandpa were driving home, I tried not to cry but I couldn't hold it in so I cried a soft, silent cry into my sweater that only I could hear.  I knew that if I cried outloud, my grandpa would too.  I had to be strong.

The next morning, excited as I was, I hoped with all my heart that his little spirit was still there.  When we got there, I ran as fast as I could to the room and saw my sweet little brother squirming and coughing as always.  I felt little joys of happiness bursting in my stomach.

That night was the most devastating night of my life.  My innocent little brother's spirit left him that night.  As soon as it happened, my grandpa rushed me out like he was in a marathon.


I woke up feeling different.  I didn't like it.  I missed the sound of coughing in the morning.  I missed my brother, but I knew I was stronger going through it.  I knew that everyone was stronger.

I went to the living room to open presents after thinking a while.  It was all different, no little brother squirming on a blanket in the middle of the room.

A couple hours later, after opening all my presents, I started to cry.  My mom calmed me down by telling me what she saw when my brother died.  She said she saw my brother's spirit float up to my aunt's spirit in heaven.  That made me stop crying but start thinking, "Why did it have to happen now?"  "Why not later?"

About a few days later, we went to my brother's funeral.  For the first time in four years, I saw my mom and dad hugging.  For those few seconds, I felt like a family again.

she is beautiful and i love her.
we miss him.

Sunday, March 12, 2017

a random spilling of words.

i used to write weekly on this blog, sometimes daily.
i wrote because i felt the need to document every little detail about my son's life; i didn't know what the future held for him, for us.
i didn't know....but i knew.
almost out of desperation, i wrote because i knew that i was losing him and i didn't want to forget any little moment that transpired between us.
i wrote because i felt so much and i needed to let it out.

i don't know why i stopped writing.
well, i do.
i stopped writing because my son died and the feelings that followed were too overwhelming {and often too raw and dark} to share.
i shared the journey of his life and death and tried to work my way through the waves of grief in the year after by writing it all.

i stopped writing when i couldn't figure out how to formulate new words for the same feelings that bombarded me day in and day out.  what else can i write?  i am feeling all the same things.

i'm still hurting;  it still hurts.
i'm still missing him;  i won't ever stop.
i'm still fragile;  i still fall apart.
i'm still broken;  bandages are barely covering wounds that won't ever heal.
i'm still a mess;  i don't know how not to be.
i'm still trying;  oh my heart, i'm still trying.

i am still trying to find my purpose.
what is my purpose?
what am i supposed to be doing?

i ask myself this question all the time. 
i'm almost finished with my associate's degree and will continue on to further my education.
Med School.
 Graduate school.
Medical research.
Finding answers.

these are my goals.
but what am i doing??
most days i feel like i'm not doing anything.
i'm stressing out about tests and papers and being overly anxious in all aspects of my life...but are my goals attainable??
i want to make a difference.
there is this constant urgency that lives deep inside me, telling me i need to be doing more.  i need to be doing something that matters. something big. something bigger than myself, bigger than the fears that are holding me back.
but what?
i want so badly to figure out what took my son from me...that's my ultimate goal.  what is this disease that slowly ate away at his brain for years and then rapidly stole him from my arms?
i want to find the answers i've been searching for for almost 10 years now.
his whole life i was searching and i have never stopped.
i want to do more.
i want to be more.

i am trying.
i look at Aubrey and see how beautiful she is, how perfectly strong and capable she is.
absolutely resilient, she is my anchor.
 i worried Connie's death would change her; it did.
she struggled.
she still struggles in her own very personal and quiet ways...but losing her brother didn't jade her, didn't make her too timid to face the world like i feared it could.

she is a warrior.
braver and stronger than i could ever hope to be.
this year she tried out for the school play and did an amazing job!

she won an award for a painting she did about her life and her journey through her brother's death.

my little girl has been learning to ski{no fear at all!} with my brother-in-law and nephew.

 i myself am too scared to ski for fear of getting off the lift and running into a tree.

she is brave and strong and i am so proud of her.

i want to be braver, stronger than i am now.
fear and anxiety hold me back more often than i should allow.
feelings of inadequacy constantly swirl around my head, making it hard to focus on anything else.
i want to be a good example to Aubrey.
i want to love and be loved.
i want to feel like i deserve it.

these are my thoughts.
a random spilling of words.
i felt like i needed to write.



Friday, December 23, 2016

3 years without him..

3 years today.
3 years without my beautiful boy.

i haven't written in almost a year.
i don't know.
i'm feeling most of the same things.
i feel everything.
sometimes i feel nothing.
i try to feel nothing. 
 i try to pretend i'm fine until it builds and builds and i can't contain it...and then i feel everything....all at once.

today i'm feeling it all.
today i'm sad and i'm broken and i just miss my son.

i miss him all the time.

there is an ache inside of me that will never go away.
losing a child is not something you get over.
i will never "get over it".
the only thing i can do is go on with it.
i go on because it's the only thing i can do.
i go on with the grief and the love and the tender ache that will always be in my heart.
i go on because i can't go back.
i go on because...what else can i do?
i go on because she needs me and because i love her with the same fierceness i loved him with.
i love them; so i go on.


i go on but i feel broken inside.
like a million shattered pieces that i can't possibly begin to put back together.
instead, i place them in a box.
i place the shattered pieces in the box and close the lid.
i wrap the box up tightly.
on the outside the box looks neat and put together.
the corners are crisp and perfect and you would never know of the mess that lives inside.
you would never know that the pieces continue to shatter and break, with even the slightest bit of movement.
opening the box seems more dangerous every time.
there are so many pieces, so many ways to get hurt.
so i keep the box shut.
i carry it with me, fully aware that the contents are getting more mixed up and broken with each step.  some days i walk carefully, mindful of the fragile pieces inside.  other days i run like hell, even though i'm aware of the damage that's happening within.

today i open the box.
it hurts.

i miss him so much.

i remember the last moments i had with him; they were beautiful.
he was beautiful.
his whole life was nothing but beauty.
he struggled.
oh my heart, did he struggle.
he suffered more in his short time here on earth than any little boy should ever have to.
but there was always this beautiful light around him.  when i held him in my arms, i felt it and i know he felt it too.

the day he died, the day i held him and watched him take his final breath right there in my arms, there was so much light and love in the room that it was too overwhelming for words.
his death was peaceful and his life was beautiful.

so what am i supposed to do now?
what is a mother supposed to do when her life's true soulmate is gone?
what do i do when it hurts too much and i just want him back?

i honestly don't know.
i have this box.
the pieces are broken but they're still beautiful.
his life was a blessing and it's my duty to honor it, to always honor him.
i will sort through the pieces, i will.

just maybe not today.


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.