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.

CHRISTMAS

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.

<3

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.

<3