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!...my son can still live because it's all okay and none of this is happening.  it 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.

<3

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.

<3