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.

Sunday, June 14, 2015

when everything familiar is gone...

a week ago aubrey and i drove to the cemetery after church to visit our beautiful boy's spot.
as i drove around the bend and looked for "his blue stuff", panic set in as i couldn't find it.
i always knew where my son's spot was, even from a distance because i could see his blue
in his spot, where 18 months of my collected treasures were supposed to be, there was emptiness instead.
stark emptiness.

it felt like the wind had been knocked out of me.
aubrey and i got out of the van and ran to Connor's spot and sat there in disbelief.
it was gone.
it was ALL gone.

18 months of things that meant something so dear to us were all gone.
i sat there and cried.
aubrey wasn't sure what to do or think.

i know they were just things.
meaningless things to most.
i understand the value of what was taken was miniscule in the grand scheme of things....
but to me, and to my sweet little girl who can only bring things now to her baby brother---these things meant so much more.

we had been collecting and adding those things to our sweet boy's sight for as long as he's been buried there.
for us, these things helped.
for me especially, these things were my way of staying connected to my precious little boy when there was nothing else i could physically do.

these things helped.

they were just things.
but they were special things for my beautiful boy.....

and now they're gone.

but it's okay.
i mean, it's not okay....but it's okay.
it's been a week and i haven't put anything new there yet.
i'm going to.
i'm going to find new things for my sweet boy and those things will be special too.

life is just like this.
you're going through life, everything is fine.  everything is just how you expect it to be.  it's predictable, things have always been this way, the way you're used to.  you grow accustomed to the familiar things about life---they are of comfort to you, a reassuring constant.  even if they're little things, the familiarity of them is somehow soothing to you in such a chaotic world.
and then one day, you drive around the corner and everything's gone.
everything's changed.
just like that, in one quick instant, everything you knew to be true is different and you weren't expecting it.
it's a punch in the gut.
it takes the air right out of your lungs and you're left trying to remember how to breathe again.
there's an emptiness where everything familiar used to be and that can be hard to cope with.
devastating, sometimes.
you need time to let it all sink in---this newness isn't comfortable, it's sometimes terrifying.
it's new.  it's different.  it's change.
change is hard to deal with, for me especially.
so you let it sink in.
you sit with it and the feelings are sometimes too hard to handle so you refuse to acknowledge them at all.
little by little you are forced to deal with it, maybe just tiny bits at a time.
you are adjusting, just in your own way, at your own pace, in your own time.
you're changing.
even though you didn't expect it or didn't even want to.
you change because things have changed.
the process is different for everyone.
but no one can completely avoid it.
life's not really like that.
oh, how i sometimes wish it was!!

today, i'm letting little bits and pieces in.
i'm acknowledging things i don't want to and trying to not turn away completely and hide from the things that i'd rather just ignore altogether.
i'm trying.
i'm changing, whether i want to or not.
i'm trying to be okay.
that's my focus for today:  just try to be okay.

happy Sunday to all of you.

Sunday, May 17, 2015

that person.

i've struggled with writing lately.
i feel like if i truly write what's on my heart and in my soul, i will be that person.
i will be that person who can't stop talking about sadness.
i will be that mother who lost her son and everyone knows she lost her son but she keeps talking about it anyway, even though talking about it will never bring him back.
i'll be that person who seems to only be dwelling on the hard things when she clearly has so much more to live for.
i'll be that person who drags everyone else down because she can't seem to figure out the balance of normalcy and happiness after death and despair.
i'll be that grieving mother who should be getting on with life by now, but for the life of her just can't seem to figure it out.
i'll be that person who seems bitter to the world but in her heart she's not.  she's really not, she's just broken and doesn't know how to fix herself.
i'll be that person.
i am that person.
i don't know who else to be.

so i'll write, and i'll write what i feel because that's always been my purpose for writing, to get things out of my head, no matter what they are.
lately they just happen to be hard things.
heavy things.
just sad stuff.

i miss my son.
isn't time supposed to ease the pain, or heal wounds or something magical like that?
i get what the phrase means, i do.
the pain is definitely less raw than it was 17 months ago.
my heart is less exposed than it was when i was holding my son as he took his last breath, or when i was watching him being buried in the ground.
time has allowed me to build up a wall, an armor, around my heart that helps me get through each day without actually dying.
so i get it, time helps in certain ways, it does.

but oh my heart, i just miss him.
there are times when i'm okay-ish.  when i'm busy and i don't let myself stop and think, i can be alright-ish.
i still have fun and laugh and find genuine moments of happy.
i am embracing (ok, maybe not embracing but really trying hard) at school and searching for a life path for myself, something that i can feel fulfilled and useful at, trying to find a purpose.
i am trying my hardest to feel happy and not fall apart.
but oh, i have to try so hard some days.
sometimes i feel like i'm just getting through the day by keeping my mind and body so busy that i won't possibly have time to acknowledge my reality.
i'm doing everything i can to play pretend and make believe so that at the end of the day i won't have to realize all over again that my beautiful boy is gone.
he died.
i didn't save him.
i just miss him.

so here i am, that person who keeps talking about the same grief, keeps pouring out the same feelings over and over because i just can't quite seem to let them go.
i'm trying.
it's not like i'm not feeling them.
i'm not avoiding my feelings completely.
i do tend to let them build until i break though.
but it's all i can do some days.
i don't know the "right way" to grieve, i'm sure that there isn't one.
this is just me, my way.
it may not be the best but hey, i'm still here.
sometimes it takes everything in me to understand why, but i'm here and i'm trying and that's all i've got.

i'm just a person who misses her son.
that's all.

happy Sunday to all of you.

Sunday, May 10, 2015

i am a mother.

i haven't written in weeks.
i have tried to sit down and write several times because my soul has so desperately needed it, but my mind wouldn't let me.
my mind has been a jumbled mess of stress, worry, fear and emotion lately.
finals had a lot to do with that.
i stressed so hard about my exams, studying nonstop, letting all the stress, emotion and worry build and build and build...............
and then it was over.
i took my last exam on wednesday night and then it was over.
thursday i thought i would feel a huge sense of relief, a freedom of sorts.............
and i did, in a way.
i felt relieved that i was done with math and there was nothing left to study.
i was relieved that i could finally just sit and not have school stress on the forefront of my mind.

but when school stress is gone i'm left alone with myself and my thoughts........oh my heart, i crumble.
when there's nothing left there to occupy my mind, i crumble.
when i think too much---when i actually let myself sit and think and feel---i crumble.

which brings me to today---Mother's Day.
it's the best and the worst day all wrapped up into one.
i am a mother.
it's the best thing i've ever done and the most whole person i'll ever be.
but half of what makes me a mother is missing, is gone.
i don't feel like a whole mother anymore.
it's such a conflicting feeling.
i know he's still mine, i know i'm still his mother.......but he's not with me anymore, not really.
people always say to me, "he's still with you".  i know what they mean.  i get it, i really do.  i understand that he'll always be "with" me.......but when i'm alone at night, sitting by my son's little makeshift bed that's still in the middle of the living room floor.......when i'm sitting there with my arms so empty just wishing i could just hold him again and it sends a chill throughout my entire body, a chill so cold i don't think i can ever be warmed........when i'm in his room going through drawers and drawers of his clothes, desperately trying to catch a hint of his sweet smell........when i'm still dreaming so vividly about my beautiful boy, and in those dreams i just want to save him........i'm trying so hard to save him and then i wake up.........
in those moments i'm so painfully aware that he's not with me.  
not really.
not the way a child should be with his mother.
not the way he belongs, in my arms.
he's still mine but he's gone.
he's my son but he's gone.

so this thursday, when i sat and tried to find relief, every sad feeling, all the emptiness i had been trying to cover up with busyness and school stuff came flooding in instead.
oh, i don't know how to describe to you the feeling of it, the weight of it all......all i can say is that it hurts.  it's a heavy hurt, a hurt that sits on my chest and clenches my throat to the point where i know there's no way i can survive this.
it's a panicky, gut-wrenching feeling to realize over and over again that my son is gone and that the rest of my life will be lived without him.
i sit on the floor and cry until there are no more tears because there are no more breaths left in me and i am certain that i cannot do it.
i cannot make it the whole rest of my life without him, and with this pain.
it's all too much.
i can't do it.
i don't want to.
i can't!!

oh, but then i look into my sweet girl's eyes and i see you, and i see her, and i know that somehow i have to keep going.........somehow i will keep going.
not for me or for you, sweet boy.
but for her.

she needs me.
she loves me.
she misses you.
oh we both miss you, Connie.
she is a beautiful reason to keep trying and to keep searching for hope and strength.
she makes it all worthwhile, just like you did, my beautiful boy.
she is every bit as beautiful as you in her own very special way and i know that i was blessed with you both for reasons i come to appreciate more and more as i fight to understand my place in this life.

i cannot do this alone.
some days i don't know if i can do it at all.
some days i question whether i even want to.
it's hard and it hurts so much more than i can bear.
but there's always a reason to keep trying.
i'm reminded every time she calls me mom or tells me she loves me.
even when she is mad at me or rolls her pretty little eyes when she thinks i'm not looking, that reason is still there.
she needs me.
i need her.

i'm a mother, but i don't feel whole.
i'm trying my best to move forward in a world that i don't quite understand, without my life's true soul mate.
i love my children.
they will always be my favorite part of me.

i know there are many different definitions of what constitutes a mother.
mothers come in all shapes and forms and every situation is unique and special.
happy Mother's Day to all of you.

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.