My arms are empty and acheing...

I can’t believe I’m a mother without…

Life has been twisted and turned upside down. As a mother, I had both the wonderful privilege of holding my sweet son as I brought him into this world…and the horrible chore of holding him as he took his last breaths and left this world, at only 7 years old. June 24, 2010 he earned his angel wings, passing away after an inspiring but brief fight against Cystic Fibrosis. Now I live, solely focusing on living a life to get to be with him again in heaven, and to raise awareness for Cystic Fibrosis research. I am dedicated to a cure, not only for my sweet sons legacy but so that other CF families never experience the greatest loss of their lives that we are now facing. My mother’s arms are missing Connerman, yet he still inspires me daily to leave a mark of LOVE on this world…so for you my sweet prince, mommy will try!



Love Love Love

Always Always Always


Tuesday, August 31, 2010

2nd grade in heaven…

Today it is raining outside.

which matches my spirit perfectly.

i choose not to complain over the rain, it’s actually a welcome change and feels satisfying to my soul.

its easier to cry and be down in the rain isn’t it?

if people complain over the rain or how it affects their moods we get it. really it makes sense. it’s harder to feel sad when it’s beautiful outside.

well today is my lucky day.

rain.

rain outside.

rain in my soul.

a perfect match.

my heart is broken. my arms are empty. conners bedroom is stockpiled of crap we threw in there so we dont have to go in there.

the door remains closed.

so do the doors of my heart.

It’s not in my nature to feel so empty. it’s uncharted territory for me. and i don’t like it.

not one bit.

rain…

tomorrow conner would be starting the 2nd grade with his friends.

with his cystic fibrosis…

had it not robbed us of him.

his backpack would be stocked full of all his new goodies that he loved so much to shop for. surely it’d be filled with Ironman stuff…and lego’s. His little Grover doll would be right on top of it for security. He’d be so excited. He’d be talking non stop about getting to see his best buddies again, about being the big 2nd grader in charge of the auditorium filled with kindergartners and first graders. but he’d be the big boy. he’d hug his friends. he’d hug his teachers. his smile would melt their hearts once again. for sure he’d beg to be in his Kessler Comets shirt and matching green and gold swishy pants. he’d jump out of my car at 8:15am and kiss me and have a huge smile on his face. he’d be excited to see what was for school lunch. i’d spend my day with Hunter and baby B trying to fill the time and void in their day until we got to go pick him up at 3pm. We’d have to arrive early though to find parking. But who knows, he was getting to be such a big boy that maybe he would’ve chosen to walk to school instead, become more independent. Guess I’ll never know.

One thing for sure is I hate writing about it all in past tense.

It feels wrong.

It feels like a dream, honestly. Like a fog that won’t lift from my brain, my heart, and my soul. My mind is slowly coming to terms that he’s not coming back, but the connection between my head and my heart is broken…because my heart won’t listen. It won’t believe it. It gets angry each time my brain tries to make me remember that he’s gone. He shouldn’t be gone. This should be in the present tense. i should be rushing out for last minute school supplies, back to school clothes, lunch items, stocking the teachers room today with enzymes, inhalers and Boost to drink. I should be going over CF with the new teacher as I have each year explaining when to call me, when it’s normal, how he handles so much with maturity well beyond his years. how he sometimes doesnt have the energy to put his head up, how he may need to rest…but that he’d be ok.

he’d be ok…?

he’s not ok!

I’m not ok!

we’re not ok!

not one thing about this is ok!

HOW CAN HE BE DEAD???

HOW DID THIS HAPPEN?

HOW IS IT SCHOOL TIME AGAIN, WHEN SCHOOL JUST ENDED?

He made it thru the last school year, then was gone…

we never had a summer.

Conner never had a summer break.

he got an eternal break…

and had to leave us behind…

and we have to figure out how to pick up the pieces while trying to grieve, raise our children, deal with the universes cruelist reality…alone. without him. without me. without brad. without our boys. because we’re the jones family, home to 5. 4 boys and me the queen…but not anymore. it’s jones 5 minus 1. so a new life has to be found. new hope, new reason, new dreams, new goals, new loves, new interests, new determination, new attitudes, new personalities, we have to learn to push what we now know as lifes greatest gifts to the forefront, and learn to let go of the temporary, unimportant “stuff” of this world. it is difficult. its unwanted.

i’d be lyeing if i said i didn’t want conner back. but truthfully, the only way i’d want him back, even for a brief moment was if he could breathe. if he wasn’t in one ounce of pain. and i know that could never happen. CF is painful. Breathing is difficult. I can’t imagine the pain it caused Conner. And what a miracle that he never once complained of it. I wish it were me instead…i’ve lived 30 years…God why couldn’t it have been me instead?

the simple joys of being a child. an innocent youth.

gone.

in the blink of an eye.

one day here laughing with me, sitting on the couch with me eating the “biggest bag of Starbursts they make” and sucking on the white and red circle mints together. cuddeling. loving. laughing. smelling him…snuggeling with him in my bed…listening to him whimper…hearing him yank off his bipap cus it was making it too hard to breathe! not able to make it to the bathroom. i couldn’t get mad. i knew it wasn’t his fault. i helped him. i cherished being able to serve his needs even in that capacity. as a mom my heart broke. i gave him my bad gene. unknowingly yes, but still the same. watching it unfold so rapidly…one moment laughing and loving, to helping him even make it to the bathroom to the next morning waking up to him pretty much in a coma. unable to open his eyes fully. the fear when he could. god that day sucked…

and now here i sit.

without him.

alone.

trying desperately to find balance. to maintain equalibrium. but how can i? a peice of my heart, one that created such a steady source of love and balance is missing now. and will ever again be there…so how can i be balanced w/o my entire heart? my entire soul? everything throws the scales off these days…school, sleep, medications, therapies, schedules, other friends, mommy friends, everything. it’s all off…

i can never feel whole again…never. because i never will be. sure maybe one day it’ll hurt a bit less, and maybe there will come a day that the first thing i think of will still be Conner but with a smile and not instant tears and heartache…but what about now? I will never be whole again…and i need to figure out how to try to even up the scales a bit. i know to my core that people are afraid of saying the wrong thing to me. but saying nothing is worse than anything one could say to me.

i know that people even family aren’t trying to project anger and unkindess onto me…but it’s born of their own fear of the situation…

but i miss him,

i miss his smile. i miss his sweet voice. i miss his laughter. i miss his sense of compassion and humor, i miss his divine love of god and all people, i miss his strength and depth, i miss his hugs, i miss him at my dinner table, i miss him lying on his side of the couch, i miss the humming of his oxygen concentrator, i miss the buzzing of his vest and neb treatments, i miss his interactions with friends and family, i miss the joy on his face while fishing, i miss hearing him love on baby B and his beautiful “squishy cheeks”, i miss watching him and hunter build and tear apart legos together, i miss hearing the annoying sounds of icarly or wizards of waverly or suite life on deck that he’d lay around watching, i miss his home health nurse coming by as part of our fridays, i miss calling the cf clinic for help or advice, i miss conner sleeping close to me throwing his arm across my chest and kissing me goodnight, i miss him complaining that dinner is disgusting or gross, i miss hearing him tell me that his breathing “is not good today mama”, i miss him asking me to “call dr link so he can make me all better again mama”, i miss hearing him yell “crack attack” or “moon shining” to make dr powers laugh louder than you can imagine, i miss hearing him call the cf nurse and dietician AND social workers Dr Ben, Dr Pat and Dr Wendy, respectively, I miss him walking while yanking up the waist of his pants so he always looked like he had high waters on, i miss the neverending sippy he had in his hands full of chocolate boost, i miss hearing him yell “RED ONE!”, i miss him explaining to me why he only eats the yellow popcorn and not the white ones, i miss his innocent tears, his innocent questions, his innocent behaviors…the ones natural for any young child not just one living with CF, i miss how our lives used to be full, busy, scheduled, but filled with joy and love, i miss him every second of every minute of every hour of every day of every week of every month…and that will never change.

i miss conner reed jones born april 14, 2003 to my hubby and myself. i miss our fight. i miss our wholeness and our love. i miss the constant worry and battle cus it made me feel alive. i miss the me i used to be, the we, we used to be…and i hate setteling for this me and we that we are forced to be and figure out now…

he should be going to school tomorrow…

dscn0751

and i’m dead inside knowing he won’t be…unless there’s school for 2nd graders in heaven…

Thursday, August 26, 2010

Good GRIEF!

this week has been as close to hell as i can imagine it to be. unsupportive friends and family, uncaring, unknowing strangers, a pressured visit to CF clinic at the very hospital that we fought the battle at so frequently, seeing my family there again…tears tears tears. hes only been gone two months. yet that seems like forever ago. i need to just spew a bit because that is why i started this blog…it’s my journal and its for me not really for you.

i’m mad that so many of my friends and family leading up to conners death urged me to not be so strong, to allow myself to be vulnerable and to cry. call on them they said day or night to cry or cuss or whatever i needed to. guess what? i’m crying, i’m screaming and i’m alone. those who pledged their unending support and who said it was great to cry not only have walked away but then openly started critisizing my grief. screw you. you have no right to my life or to my family. how can you show up at my house and watch my son die, physically see the anguish and pain that brad and i felt in that instant that nothing in this world will EVER compare to ever again and then walk away from us? how dare you call us friends. we are not friends. and family who treats and judges us in the same manner…we can never remain family. plain and simple.

this death shattered us people. shattered! and perspective occurs inthis…our son’s dead. as in buried now 6 feet under ground all alone enclosed in a beautiful grover casket sealed in a cement liner for all eternity. thats whats important. we will not let anyone else even attempt to selfishly hurt us right now…it’s uncalled for. it’s horribly cruel. and rather then be mad at you…i pray for you. because my dear “friends” one day you will have to answer to that in a court higher above any supreme court we know on this earth and i pray that god shows mercy for your choices and more so maybe that by then you will have asked for and recieved his forgiveness and blessing. i’m only human. he is god. end of story there.

i only write on this blog when i’m emotionally about to explode. i think the name of this blog really says it all. this is not a jones happy happy joy joy story land blog here people, its the crappy truth of cf and death. it’s not about how much i love my children and how much tulips are my favorite flower blah blah. this is my journal. this is my lifeline. you have no idea a fragment of what i’m feeling every 24 hours, this is only one tiny 20 minute reflection of a moment in my day. if i hear one more time that i need to remember that my kids need me, and that my husband needs me and that i have so much to live for and wow how much i should cherish that he’s free now…i tell you i will explode.

I LOVE MY CHILDREN.

I LOVE MY HUSBAND.

MY LIFE IS NOT OVER.

I AM NOT SUICIDAL.

THIS MY DEAR FRIENDS IS GRIEVING.

do you even understand that by trying to prevent me from feeling these feelings further surpresses them inside of me. do you realize that if it builds up too much i will explode. do you understand that my marriage is under an extreme amount of stress from the loss of our firstborn child…and that by writing such things on my blog you are adding to our stress, thus creating a much more stressful and tense home environment for my children and my husband and i? do you realize that by watching our son die that nothing else in this world could ever hurt us that way ever again? that our whole view of this short little life is completely altered?  that mama bear will hunt you down and take you out w/o a second thought if you keep threatening and causing undue hardship for myself, my husband or my children? right now the 4 of us with conner angel at our side are taking a collective stand to say that if you are not helping us you are then hurting us. so pick your side and be ready to carry it out. either be there for us in silence, prayer, support, encouragment and love or walk away. there is no gray area.

no more gray area in our life.

i’m so pissed about some comments left on my facebook page the other day and the one who posted it knows because it’s been removed by the author. you know what you said was wrong. you know you hurt me and my husband. you know you are simply alienating us from you. there is nothing like the loss of a child. i’ve lost grandparents and close friends and nothing even comes close. nothing. so by saying that “we’re not the only ones who life throws some DISCOMFORT at” is a load of crap and you know it. a discomfort is wearing a shoe a size too small cus they’re cute a death of a child that we’ve fought for each and every single breath is NOT at ALL discomforting. it’s life altering, shattering, intense, heartbreaking, defining, horrific, tragic, rip your heart out with a fork kind of excruciating pain that can never be fixed, bandaged up or left behind. the brad and sarah that we were do not exist anymore…so as we’re redifining ourselves and our lifes goals and dreams we will be able to build a gate of dear close family and friends who we truly know now like never before, are 1000% for us and not against us. so please make your choice which side of the gate you wish to be on “family” i’m very happy to see the comment gone but wow…no apology, no explanation, nothing. no words to that…

i’m so tired of begging people thru my blog to help me. how is it that some of the people whove meant the most to me are people i’ve never, nor will i probably ever will meet? all over the country and all around the world? what happened to my “friends” who’d help me out here when i needed help with the kids while stuck in the hospital? wheres all the people who’ve offered their support before he died…

how many times do i have to say that we can NOT do this alone. we’ve been trying to hold together and pull thru the past 60 days mostly alone. and we can NOT do it. why am i begging YOU for help? shouldn’t YOU be coming to help me??? is this normal? please someone whose been thru this help me out here…give me suggestions and advice. what the heck is going on here???? why is family causing so much extra pain? why are our friends gone now like we’re diseased? and please tell me…oh lord where in the world do we go from here alone??? how the heck are we going to do this? cus i’m so damn tired of trying to beg for help from unwilling people. i’m so tired of trying to figure out why we’re alone. why nobody’s coming by or checking in. why my son is gone and our family has to rebuild each and every relationship from the floor up…

because honestly if this is a normal thing that happens…then i can see why some people can’t take it and feel suicidal. w/o a deep rooted faith and love of God how could anyone take this in?

because i love god more than anything in this world and he’s my best friend and he’s caught each and every tear i’ve shed…and if i didn’t have HIM to lean on, because humans can’t or won’t…i’d not want to live either…

YES…I’M ASKING FOR ADVICE….BRING IT

Monday, August 23, 2010

Magic number 3…

i remember it all so vividly. like it really was only yesterday. i found out that i was going to be a mother. me. a mother. my husband brad and i had only been married a year and some change and here i was 22 and preggo with what was to become the greatest journey of my life.

my greatest love.

my greatest pain.

all wrapped up in one beautiful 7lb 12 ounce little joy my husband named Conner Reed Jones.

Man i was a nervous wreck. Handing him to me after a c-section two weeks before his due date, because he’d stopped moving, the amniotic fluid was getting dangerously low and with his health concerns (only knew of prune belly then) they didn’t want him to labor. didn’t know if he’d be able to handle that.

Scrubbing my hands as hard as I could just to get into the NICU to meet him after our brief encounter the day prior.

So tiny.

Hooked up to monitors and c-pap…my heart outside of my body.

perfect in everyway.

i knew the fight that was ahead of him.

but never in a million years did i ever see the possibility of him losing his fight.

I knew the odds were against him, but i also knew there was always room for a miracle.

Now i think about where we are now. where i am. emotionally, physically, spiritually, day to day, hour to hour, minute by precious minute. life as i knew it to be is done. the old sarah isn’t alive anymore. she doesn’t exist. i am a new person, in every single way I’ve changed. I don’t have the security and comfort of what my dreams used to be. i no longer believe that any of us are immune to losing a child. i’ve seen firsthand how a life can go from being afraid of losing a child, to losing him and then completley shattered of a person thats left in the wake of it all. it’s a nightmare.

if grieving death was a disease, it would send you to the ICU. You’d be in such immense pain from head to toe, but mostly in your chest that you would be unable to walk. to talk. to eat. to drink. to think. to even get out of bed. and you know what? nobody would expect you to. in ICU you get a free pass to heal. on your timetable and nobody elses. you can say what you want to say and people sympathize. people never tell you time heals all wounds or this too shall pass or other nonsense. because the pure definition of ICU is critical care. you are critical. fragile.

this is where I am. i’ve voluntarily checked myself into the ICU. grief is just like being there. except that people don’t really get that. they think the pain is internal or just heartbreak…but i tell you that each day my arms ache…physically ache to hold him. my chest tightens when i try to breathe and think of him simultaneously. my legs won’t help me get out of bed some mornings. I’m in ICU. and there are no discharge papers in sight. i’m no where near rehabilitated for the real world. not even one step in the right direction.

but by truly only the grace of God am i able to face each day.

I wake up and instantly think of him and the pain overwhelms me from my heart to my feet and back up again. to the tips of every toe…all consuming. never ending. not one part of any day is easy anymore. and i wish people could appreciate that. there simply is no better way to explain it than this.

i used to get up each morning, and wake up 3 boys. make 3 breakfasts, get 3 ready for the day, and now there are only 2 to get up…only 2 to get ready. only 2 breakfasts. i used to assemble and prepare all the medications and hours of therapy scheduled into each tiny bit of the day i could…and now i simply pass out a chewable vitamin, thats the extent of my daily medicine treatments. i used to have applesauce only on hand for enzymes so that he could eat and digest and my fridge and cupboards had a shelf that only his stuff was on and now it’s all gone. i have no clue whats in it’s place. i don’t want to know. but it’s gone and it’s different. no more elementary school. now my oldest child is in preschool…so i know logically i should be back to school shopping but then reality hits..oh wait, no i don’t anymore. he lost. once again a reminder. only 2 carseats in my car now, there used to be 3. he’s gone. only 2 kiddos laundry to fold and put away, he no longer wears any. upstairs used to be a bedroom that i’d lay in with him cuddeling him or loving him or caring for him but now i can’t go up there. he’s not there. his toothbrush still sits in the holder. but goes unused. his legos are strewn about the house but not because of him, but because Hunters playing with them now. every single thing i did was for 3 kids. 3. and now when i only have to count to 2 every single time i need to do anything reminds me he’s gone. forget the pictures laying around or the toys or special things that remind me of him. forget the memories that jump into my mind bombarding me at any moment bringing me to my knees helpless…forget all that. it’s always in my face. it’s pulling a bandaid from a scab…OVER and OVER again. from the time i wake up until the time i can finally close my eyes there is no escape from it. none. and that is why grief is so intensly difficult. cus there is no break from it. it’s all the time in your face…forcing you to surrender with your white flag for maybe a nap if you’re able, or to an early bedtime…or to just become ok with being in the ICU. helpless. fragile. defeated.

7 years ago i knew it was going to be an uphill climb…a year later with his diagnosis of CF I knew the chances then grew even slimmer. but honestly can i say. i never EVER thought we’d lose. that he’d lose. because life’s not supposed to be like that. parents are supposed to outlive their children. and now 8 Thursdays later…8 precious thursdays since i held my sweet Connerman one thing i know for sure…and really the ONLY thing i now know for sure…is nobody’s safe. no life means more than another. my pain can be your pain in a blink of an eye. i pray you live it up and love it wholly. i pray you enjoy your fight. enjoy your hugs and kisses. i pray that my nightmare never becomes your own but please…don’t take it for granted…

cus now there isn’t one thing i wouldn’t do to see him again. heavens never been farther away then it is tonight…

love love love

  always

266

magic number 3

Wednesday, August 18, 2010

If blood is thicker than water…

Then why is water make up so much more of your body? of the world? ever think about that? You hear the saying that family is blood and blood is thicker than water, but dive into it with me here…sometimes you don’t need blood…you lose blood, even transfuse your blood…but your water is what keeps you alive. you can’t live without water in your life. Granted nor could you w/o blood…but blood can be changed…water can as well…but the beauty of that is you get to CHOOSE your water…your stuck with your blood.

did i lose you?

Today was hard. Honestly I feel like each day is getting harder than the one prior to it. But not in all the ways you may think. People are making it harder for me lately. Not the circumstance. Remember when you were graduating, or got all this money one year for Christmas or was planning a wedding (wink wink Jen) or a vacation and THEN all of a sudden people come out of the word work. They suddenly become interested THEN…kinda too late. Kinda annoyingly soliciting their unwanted advice. Which simply by definition advice is simply someone forcing their opinions onto you in hopes to pursuade you into their thinking. When you break it down like that doesn’t it appear that advice is truly just us being selfish? Who are we to advise someone really about anything? no two circumstances, no two occasions, no two human beings are the exact same, so advice is our way of saying “i know it all and this is how I would do it if i were you” which breaks down even further to TRULY say “if you don’t do it this way, its (or your) wrong. seems off right?

then why oh why am i faced with it daily? I love when I get to hear from other moms or dads who’ve lost a child whether it being a recent event or something years past. Because on a level that nobody else in this world can grasp they just GET IT. no questions asked, no explanations needed, no sorry’s, no expectations. they simply know it to their core. they feel it. no words are ever really necessary between two such people. it just clicks together like a puzzle piece long missing. I love that. In writing this blog I’ve opened myself up publicly to be judged by you, and you can chose to read what i write or because of our great freedoms you can trash what i say or stop reading and following our journey. and truly the choice is yours alone. But for me, this is my life. I don’t have the luxury of turning the page, or following someone elses story…because it’s not the same. even in similiar deaths, it is never the same. each connection to the deceased is a very unique connection that no other person living will have ever had with them. nobody. so if ten people all knew one wonderful person and that person passed away…each of the ten people will grieve the loss based upon their connections and the relationship to them. these i feel are very simple principles that we all probably understand but maybe just haven’t thought of it that way before. guess my goal is to try to get to the bottom of all of this…keep with me now…

blood is thicker than water.

but water blends into your tears when you need it to where blood cannot.

water can soak your tears, even have tears of its own but you’d never be able to tell what tear was from which person. it’s that close

and water is a choice.

blood has their own unique relationships with their family.

water does as well…but water knows when to recede.

water knows when to come in with the tide.

blood while close when you need it to be and still absolutely important…blood fails to look beyond their own unique relationships and has a nasty habit of projecting their advice onto you.

unsolicited advice.

unwanted persuasion.

unnecessary pain.

the “i’m right and your wrong” mentality will only get blood so far. even water carries those thoughts and feelings sometimes but…

the beauty of that is you can simply put down your glass of water…or dump it out and find new water.

unless you remove blood from your body you are stuck with it forever. no matter what.

that is both a blessing and a curse.

being thrown into this horrible club i’ve been forced to learn and relearn many lessons. almost daily. sometimes hourly. it’s like i’ve done my bachelors degree but wait, i wanna switch majors so ditch all that i’ve known and now lets jump to something trickier and while we’re at it lets shoot for a masters in it.

and you only got a year.

well…you think a year.

but what i’m finding is that it’s not quick enough for some people. like i’ve mentioned before people aren’t ok setteling with pain. seeing someone cry, or be sad, or be in pain and simply just let them be. or just say sorry. nope. we’re not ok with that. we have to FIX things.

but guess what…reality check time.

you can’t fix everything.

and the lightbulb moment of the night is your trying to “fix” someones sadness is simply sending them the message VERY LOUDLY that it’s not really ok to be sad. to be emotional. it’s saying “grief takes time…but uh not too much time cus then i will be uncomfortable…”

well soooooooooooooory…but last time i checked it kinda wasn’t about you.

it’s about that persons unique pain. a pain that you can’t wish, hug or love away. and it’s definately not a pain that you can fix. so do us all a favor and stop trying. and if you are wondering if you’re one of those people trying…here’s a great guideline…

if you begin a sentence with “you need to….” or “i can’t imagine what you feel BUT…” or the best one yet “You still need to….” then chances are your being a fixer. your soliciting unwanted advice. and you should stop. the best phrase that i hear from people is “i’m sorry” period. done. end of story. perfect!

while i’m on my high soapbox tonight (sheesh listen to me getting out all my frustrations! :)

lets negotiate some clear misconceptions of grief.

1. the pain is intense. it is paralizing. check.

2. it is round the clock always in your face and mind, consuming everything you do or everywhere you go. check check.

3. it is real, unavoidable, healthy and very much needed and necessary. check check CHECK…

what it is NOT…and this list is more important…

focusing on the child whose passed doesn’t mean you don’t love the ones still living. it simply means that your world is upside down.

concentrating on writing about your pain and your experience and your anger and your sadness doesn’t mean youre clinically depressed. rather it means that youre allowing yourself to feel natural feelings and emotions. and if you don’t feel them…then KABOOOOM down the road…

saying that it’s hard to get out of bed each day doesn’t mean that you feel you have nothing to live for. rather the opposite. forcing yourself to get out of bed and face each day is a HUGE accomplishment when you know that once you wake from your dreams…probably dreams of your dead loved one…that yes once again your heart is going to fall from your chest onto the floor and your gonna have to spend the whole day putting the pieces back together, just as you did the day before. and that is all. it is no small feat.

so in a nutshell if you take anything away from this post that i SOOO needed to write then here’s the cliffs notes version (oooh i LOVE cliff notes!!!)

1. family is family. friends are friends.

2. your friends are chosen by you for a specific reason. you keep the ones most important. family your stuck with. like it or lump it.

3. when family doesn’t get it, you will have a friend who will. blood can never fill all the little cracks in your soul that water can…because it’s thinner and more transparent. water is there by choice not by circumstance.

4. i love my sons. all 3 of them.

5. i am not suicidal because it’s hard to get out of bed.

6. by simply focusing on my heartache over losing Conner doesn’t mean I have nothing to live for. If thats what I meant, then thats what I would’ve said. PERIOD.

7. Yes I know that family, friends, and God are all there for me…incase you may have missed it all but my faith in God has never wavered. Yes I get upset at the situation and mad at the circumstance but I also know that this is part of something bigger then I will ever know.

8. last but not least. keep your advice to yourself…unless it’s asked for. :)

so glad to have gotten that off my chest.

night…

lets wake up tomorrow and try this out ALL over again <3, and the next day. lather rinse repeat…until it makes sense :)

Tuesday, August 17, 2010

TGFMD

(and rose!)

Stands for THANK GOD FOR MY DAD…

He met me today to take Hunter for a few days so I could have a bit of quiet time. B still naps most of the afternoon so that will provide me with some much needed space. i’ve been feeling so overwhelmed and stressed, so even though its only a few days…to me it’ll be a miracle.

it’s strange that immidiately after conner passed we had all sorts of people here to help and support us, and now there’s hardly any. i feel like a burden asking others for help, but i guess people just don’t understand that immidiately after a loved one passes it IS important to be there for us, but EVEN MORE important is when everyone else leaves and reality and life start sinking back in. right after Conner died i went into autopilot. i got caught up in the business of planning his service and picking out clothes for him, and for us, and for designing headstones and was just plain busy. but then everyone left…and suddenly i’m alone.

but not just feeling alone without my friends…but feeling desperately alone because now i fully understand that Connerman’s never gonna walk thru that door ever again. yet i’m here w/o much help or support. it’s really devestating.

i’m beyond exhausted.

i’m trying so hard to keep up pajama and library monday, run around and chase after my kiddos and laugh and tickle and love and enjoy each moment but in the quietness of my days and in the deepest parts of my heart i’m screaming out for help. I make it to my weekly counseling appointments, it may take a day or two but i've been returning all my phone calls and emails, since meals have stopped i’ve been trying to get food ready, cleaning the house, loving on my kids and spending time with my husband but i’m also trying to stay alive emotionally. there’s no way possible that i can do all of this. i can’t grieve the death of my son whom i’ve fought for from conception AND try to still be a good mom and wife and cook and cleaner and friend and on and on and on.

i can’t.

i don’t know if anyone could honestly.

trying to force myself into getting on with life is the most devestating thing i can imagine doing. why in gods name would i want to keep on living the way we lived before? it’s impossible to even fathom trying to. because my life isn’t the same anymore, and it will never go back to being the same. i’m not the same Sarah I was 7 thursdays ago and i will never know her again. I’m not the same mom, i have not the same fight, i don’t have those same feelings, i don’t eat the way i did, i don’t sleep the way i did, i don’t tuck 3 beautiful sons into bed each night as i once did, you see. i will never be that me again. so i’m trying to figure out how to be mom, wife, sarah and i guess me. figuring out who in the world i am now. i don’t have the same friends, i don’t have the same passions, i don’t have the same petiness i used to, i don’t know anymore about anything. i’ve lost my son, i’ve lost my life as i knew it, my identity, and now i’m trying to figure out how to jump back into the world the way it used to be but i can’t. because my life isn’t that way anymore. it’s all new. and it’s all different. and its all painfully hard.

finding new friends. finding new interests. finding new activities to do with my kiddos. finding new ways of connecting with my husband. finding new ways to try to get out of bed each day. just trying to find new meaning…

we’re just left at ground zero now.

i’m 30 yet i’m now a newborn all over again.

i've had bestfriends and now i’m starting over again.

i had loves and interests and passions and now they’ve all been swept up from underneath me.

i’m not me.

i’m not sarah.

i’m not who i thought of myself as.

so i’m kinda floating in the breeze trying to find the right fit. gods plan and purpose for my life. trying to balance being kind to myself and being a good mom and trying to find time to adequately grieve these monumental changes and still figure out how the heck to get dinner made and laundry done…

so bare with me…

guess i’m a work in progress…

connerman your death rocked my world and turned it upside down. i truly feel that it is so true that it’s better to have love and lost then never loved at all, because all of this pain that i feel, the sadness, the tears, the heart break and the misery is all worth it…for getting to call you mine and to love you, protect you, adore you and be your mom if only for 7 short years…but conner baby…stay so close to me…so close i can feel you…cus i can’t do this w/o you…

love mommy <3

Monday, August 16, 2010

777

Life is moving in a way I don’t want it to.

a way i never wanted nor intended it to.

it’s moving forward…without him.

i’m having to now figure out how to find a balance in my heart when someone wants to get together, and i too want to get together, but the last time we met up he was there too…its so hard to jump into that.

it’s hard to explain it to the others, those on the other side of the fence

i’m tired of all this crap

i’m tired of feeling like i’m 30 and instead of enjoying some of the best years of my life watching our children grow, i’m forced to relearn everything i ever knew. all over again. but without him.

im so tired of eating

i’m so tired of screaming

i’m so tired of crying

i’m so tired of hurting

i’m so tired of missing him

i’m so tired of feeling so afraid of the next day

i’m so tired of thinking about how i’d give ANYTHING, ANYTHING to change the outcome

i’m so tired of sitting here at this dumb computer that we bought so we can have a laptop while away in the hospital with him, only to realize that now he’s not here…and never again will be

i’m so tired of feeling so pissed off that the physical fight is done

i’m tired of smiling

i’m tired of being tired

i’m tired of simply being.

this pain is literally crippling. i see his face…i speak his name…and my whole body hurts. with an intensity greater than i’ve ever known. and i don’t know how to get past this. i’m tired of looking back at posts from just a few months ago thinking that then i had it so good. he was here, not feeling like any child should ever, but he was here…i could touch him, smell him, talk to him, look at him, watch him, cuddle with him, feed him, nourish him, give him his meds and his therapies, i could cry for him and with him i could pray for his healing, i felt so strong then.

and now…

weak is how i’d define my spirit.

my body feels like there’s not one more thing i could possibly take. that i’m reaching out to all my friends and family and i’m trying to be happy and i’m trying to take one tiny baby step in front of the next one but my soul is screaming to stop.

to end all of this.

not life…but the suffering.

only there is no clear way of doing that except to continue to walk thru this. day after day after day, minute after minute, hour after hour…and it hurts like hell.

7 thursdays ago i held my son for the last time.

7 thursdays ago i begged him to let go to end his suffering.

7 thursdays ago i prayed for him

7 thursdays ago i showered him with kisses and snuggles and hugs and affection knowing it would be the end, but never would it have been enough…

7 thursdays ago i watched my son struggle to survive and to let go

7 thursdays ago i saw cystic fibrosis for just what it is, the devil in disguise

7 thursdays ago i fed him his “last supper”

7 thursdays ago we were surrounded by love from friends and family

7 thursdays ago i held him as tight as i could w/o compromising his poor breathing

7 thursdays ago i felt his body slowly grow colder

7 thursdays ago i watched as each breath became farther and farther apart, helpless to stop it

7 thursdays ago i watched my son die. and with it my dreams for his life died too…my heart died a bit too. all of my relationships, all of my trust, all of my faith in the way life SHOULD be died as well.

and now 7 thursdays later i’m desperate to be back those weeks ago. when i had him. when i held him. when i breathed for him. when i love love loved him, when i knew it would be always always always…but never again would it be enough.

never again would it compare.

never again my life would be free from pain, the greatest pain anyone could ever face

never again will i be able to look at a child or baby, and not remember him then.

never never never…

i will never be ok i will never get “over” this. i will never be free from this pain. i will never again feel the way inside that i used to feel.

never…

and today, 7 thursdays later…everything that i am, ever was, or ever will be…is now defined by the death of my sweet 7 year old boy. and today, i know for sure i will never be ok.

now…7 weeks ago, my 7 year and 77 day old son, Conner is gone…and i wish, i only wish that i could’ve saved him…

7 thursdays ago my life revolved around my sons life

and now 7 thursdays later my life revolves around his death…

Lord help me…

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Tuesday, August 10, 2010

tip of the iceberg

I almost just don’t know what to say.

my brain is spinning out of control, my tummy is nausiated and i’m desperate to see conner again.

DESPERATE

I’m dabbling in reality and let me tell you i don’t want to be here.

i want life to go back to the way it used to be

normal

quiet but busy

comfortable

numb

tonight my heart is torn into shreds

i feel this deep sadness and loss to my core

i miss him desperately

i haven’t been to his place in a week and a half…i cant stand going there and standing or kneeling ontop of him

thats the closest we’ll ever be til god decides…

i want to simply scream

i feel alone

cold

desperate

i feel empty

i feel a failure

i feel like the world continues to spin, people go about their lives and i’m stuck

i’m drowning in a pool of my own tears and the world simply is suntanning in their own lives you know

this pain is simply the tip of the iceburg

that i know

but it’s emmense

it’s intense

it’s life altering

it’s gripping

and it’s killing my heart.

tonight, i’m simply done…there are no more words. my heart, my chest, my stomach, my soul…

just

done

Sunday, August 8, 2010

Silence

My husband and two of our friends just left taking the two boys with them to the county fair. doesn't that sound southern of me. hee hee hee...no offense...anyway. I bet they're going to have a blast!
it is very quiet.
it's me and my dog, grover.
today was a hard day. i've been overwhelmed with some news i heard from a dear cf'er this morning...my heart literally broke. and then to find out about CG's hard night, filled with a code and yet another surgery after having her double lung transplant just days ago, and another little warrior continueing to have issue after issue after ISSUE from cf...gggrrrrr
so today is just very difficult.
it made me very emotional, not just about them but about Conner and the reality that he's gone now. for good.
and life as we know it is hanging in the balance for CF, for Skye, for every single person with CF. I don't believe there's a "mild" cf...because those with "mild"cf can still catch the same CF bugs and they too can get lung infections and they to can die from this monster. I feel like each and everysingle one of us is joined together and holding onto life with just a tiny little sewing machine thread. that frail, that fragile. one quick swoop and it can break, it can be over in the blink of an eye.
I've seen it. I hate that I have, but I have.
I've seen with my own two eyes how fast CF attacks when it's ready to. I've seen my child go from no oxygen, to nighttime only oxygen to 24/7 oxygen in a matter of a few months. I've seen him go from eating to not eating in one day. I've seen him go from being able to run and keep up, to run and be behind..to not be able to run...to not be able to walk in only 3 months time. I've seen a talking, eating, laughing beautiful bright child one day, turn into a shrivel of a human being slipping in and out of a coma and barely breathing the very next day.
i've seen my own son die.
i was there.
my husband and i were holding his hands begging him to just let go.
let go.
breathe.
let go.
we love you.
honey...it's ok, just go.
we love you so much...
it's never goodbye sweet prince.
i love love love you, always always always...

BEGGING him to die. because of what cf turned his life into. our lives. there wasn't a part of it, cf hadn't touched.
can you imagine that...begging your child to die...
uhhhg...
Cf is horrible...it's swift and precise, steals one smile after the next, fills your day with heartache, and gosh we need that cure...we need to stop this beast. no parent should ever have to beg their child to die...
i wish i never had to.

Friday, August 6, 2010

tired of hurting…

i’m so tired of this reality.

i’m ready for it to stop.

i hate that he’s not here. i hate that i think about him nonstop in every activity in every second of everyday but i can’t hold him, or see him, or simply hear his sweet voice except on my voicemail. i hate it.

i feel such anger at it all.

some days i simply don’t get it.

it makes no sense to me.

i can’t keep him off my mind. not for one minute. not one full minute. and that kills me. because i miss him so desperately. and for 60 seconds i can’t get my mind 100% off of him.

we don’t deserve this. our sweet conner never deserved this. but really, nobody’s kids do.

no kid should have cf, or cancer, or any other horrific disease. it’s unfair.

how in the world did we get here?

i haven’t gone up to see conner in a week. i can’t. i feel so horribly guilty about that. i know i shouldn’t…afterall he’s not truly there. but ive been going there every day to maintain his area and take him new flowers and i haven’t. because it hurts…to the core.

i havent just lost my son, i lost my security, my sense of fullness, my no fear, no worries attitude. its all been replaced with scared vulneralbility, anger, frustration, rage, sadness, mind wandering, body exhausting mind numbing silence and pain. i feel i’ve lost friends. i’ve lost compassion, ive lost so much in such a short amount of time. life as i knew it to be, is over. i’m forever changed. my world is 100% different and i’m trying to figure out where to start rebuilding from the ground up. and thats devestating. because i don’t want to. i loved my previous life. i was happy, secure, full of energy and hope and full of miracles and research and i was full of the fight and loving every moment of feeling like what i was doing was saving my sons life.

slap me in my face because i couldn’t have been farther from the truth.

i wasn’t saving him.

i was prolonging his death.

i was prolonging his suffering…and for what

we lost anyway

and that is mind boggeling devestating.

it is kicking me while i’m already down.

feeling like it’s friday and the home health nurse should be stopping in and we’d be coming up with next weeks ivs and game plan and going over whose on call that weekend and me needing to call the cf clinic and getting answers and meds…and now i have none of that.

i have nothing.

i have lost my son.

the job i held so dear to my heart, that made up everything that i am,

my dream job is gone and left me with no replacement…

my boys fill my day with business, diapers, feeding, swim lessons you name it. but i feel so empty. being just a mom isn’t what i was created to do. not that being a mom is bad or unfulfilling because it’s not. i am a mom, i have been a mom for almost 8 years…but being a mother of a child of cf or any disease i would imagine is a special calling. its like being a mom with an extra set of mommy responsibilities. its a huge time commitment. a huge heart commitment. and now a huge gaping wide hole that no one can fill. not me, nor my husband or either of my living sons. they need me absolutely, but not in the way that conner did. and i feel utterly helpless, unimportant and empty.

putting me first again

Since Conner died as you can imagine taking care of myself is lower than last on the list. i honestly couldn’t care less if i showered, ate, stayed in bed all day, took my medicine, any of it. I don’t care if it’s sunny or rainy or in between. Life has become very difficult. each tiny decision extends my brains beyond capacity, I can’t remember the most mundane of tasks, if it’s not written down somewhere i can easily see then i simply forget…or don’t show up where i’m supposed to be.

those that know me, know that this is quite the OPPOSITE of me. i’m always punctual, on time, at least showered, hair looking ok not always covered in a hat, in actual clothes, not in sweats and a tank…this new me is 180 degrees from where i was just 6 thursdays ago. I haven’t made it many places, when i do go out i’m never on time, each tiny detail pushes me over the edge…i’m not eating. i’m barely drinking. my body is exhausted mentally, emotionally, physically and nutritionally. i have no energy, my body is simply tired…

i’ve taken a stand for myself recently.

my husband and i joined advocare. not only that, but we just got our products today to do the 24 day challenge for me, and the 14 day challenge for brad. neither of us is looking to lose weight in particular, but we’re both looking for nutrition, energy, lean muscle and energy…and did i mention energy…The best part of this is, advocare simply helps your body do what it is designed to do. that being, if you need to lose weight, you’ll lose it, if you need to gain lean muscle, then you’ll gain it, if you simply need nutrition to boost your metabolism then it’ll do it. if you lift weights or strength train or run there’s programs to help your muscles before, during and after your excersize. i have a handful of friends across the country signed up to do the challenge with me…and i’m excited to begin this monday. i’m excited to see my energy soar and my mind to actually focus because of Spark, i’m excited to be rid of all the heavy toxins and hard to reach fat with the vitamins and cleanses, im excited to preserve and gain more lean muscle mass with catalyst because osteoperosis runs in my family and my health matters to me. it’s simply time to put me first…

I love to pay it forward…so that’s why im mentioning it. i have some dear friends doing the programs that have shared fantastic results…and they’ve been looking for ways with every new diet coming out and not succeeding, but some of them have lost the weight and have kept it off 1, 4 and 6 years already! so if youre looking for help like i was and AM consider googeling Advocare and seeing their amazing track record and results, or go to my site at www.advocare.com/1008603 and research the company, the products, the medical advisory board, and the non paid endorsers…it is fantastic. i really think us cf mamas could benefit from more energy because our kids need it so much… i’ll let you know how it goes…

wish me luck…..

Monday, August 2, 2010

Holding my breath…

When you lose a loved one its like a rock thrown into a lake…creating ripples everywhere…not one part of that area isn’t affected by it.

it changes everything because it breaks all the rules.

We teach our kids that we are kids, then go to college, and get married have kids and WHEN WE ARE OLD we die…but what if…like us…its a lie?

if you can grasp the depth of that concept then you have a taste of what I’m grappeling with lately.

this isn’t natures order.

the way i was raised never mentioned one thing about a child dyeing.

it didn’t exist.

it isn’t supposed to happen.

when how you were raised, and how your teaching your kids about death becomes a lie…then you become what i am now…a helpless vulnerable mess.

i don’t know what to believe sometimes.

my faith in “the way things are supposed to be” is insignificant. it’s pointless. it’s gone.

We are a culture of people who love a happy ending.

we love happy movies, or love stories, or the fairytale wedding, and the perfect vacation yadda yadda…

we are not a culture that accepts the hurt. the bad, ugly truth…reality.

we live in la-la land where “that could never happen to me” instead of in the reality of “my gosh, this could happen to anybody…”

because it can.

it does.

it will.

when we are in pain…or someone we know is in pain, great pain, infact the most defining pain of their entire lives…we don’t know what to do.

we don’t know what to say.

we wish it to go away.

we turn our backs on it.

we deny it.

we refuse to accept it as reality…

to reach out and help heal.

because it’s not a happy ending that we’ve been so accustomed to in make believe land.

it’s not real.

life is real.

pain is real.

yes there are happy, bright and shiny endings…

but not always.

and then what?

do you pretend it’s not really there?

do you walk away because reality is not as pretty as in the movies…?

do you say empty words, or give empty promises to make yourself feel better?

or do you ache with that person, really feel it to the core with that person…accepting reality for what it is..learning to live in the real world where pain exists and movies are simply fiction.

do you chose to accept that “the way things should be” growing up, aren’t always the way they will be. and be ok with it?

i get that its heavy.

i know that it’s overwhelming and intense.

i get that.

i know it to the absolute core of my being.

because i’m living in it 24 hours a day 7 days a week for the past 5 thursdays now…

it is MY reality.

the one I’M trying to survive,

the fight i’m struggeling to keep my head above water in…

the denial, the absolute mind numbing pain and shock and disbelief that comes with each passing day. each day worse then the one prior…

smiling…trying desperately to not be seen as the “downer”…  but more accurately, being the one living in reality…and no longer a fairytale…

trust me i am longing for the day where i can see a picture of Conner and not have a flood of emotions overwhelm me on the inside…

i hope that one day i can drive past a cemetary and not feel nausiated.

i wish that i didn’t have to learn how to grieve…which is simply learning to live without him.

because it sucks.

reality is horrible.

life can be so cruel.

it’s sink or swim…

it’s fairytales or reality…

it’s trying to figure out which limb on your body you can best live without…cus our children are our bodies…they’re our hearts, souls, minds…everything.

do you pick an arm and never be able to write or throw with it again…or a leg and then have to relearn everything you’ve always known all over again…learning this time to live without it…

it’s unfair.

what i know for sure is that it’s horrible to be going thru this. absolutely devestating. it effects every fiber in my body, and in my husbands and childrens as well. it effects every relationship i have, with my family and friends. it’s teaching me lessons i never wanted to learn. its forcing me to live without him. and i don’t want to. grieving is lifes hardest job. the most horrible work imaginable.

it’s taking your heart full to the brim with love and happiness and throwing it on the ground, stepping on it over and over and then tearing it into a million teeny tiny peices and then handing you some tape and saying “here you go…fix it…all the pieces back where they came from, except this one over here…you have to learn to live without it” and it’s the most secure, safe and important part of your heart…and you have to learn to let it go…

it sucks to go thru this.

id never wish it upon anyone. not even a worst enemy.

but even more than that, it sucks that i can’t find a safe place besides here to let it out.

to figure it out with help,

it’s not safe.

it’s reality, and not happy make believe that we’re all so accustomed to.

and feeling alone and isolated and learning to live w/o the love that made me who i am today is simply impossible…

“they” say it gets easier in time…not less painful but easier to manage…i tell you what

i’m NOT holding my breath…

Sunday, August 1, 2010

zzzzzzzzzzz…..

i need to go to bed. my body needs sleep. my head is pounding my body is tired and worn out and my stomach is nausiated…

but my stupid brain wont shut off.

these past few days i’ve been bad.

horrible.

felt all this pain in my heart.

pain and anger and hurt.

i really was enjoying that overwhelming numbness that I was in for the past 5 weeks…

i’m not ready for it to unveil itself in all its glory and really tear me apart.

i’m scared to death.

i’m just so hurt, so broken hearted, so mad, and not one second of any day goes by that i don’t think of him. that my heart doesnt break for him, for us, for his brothers. i’m good at hiding behind smiles, i always have been…but inside i’m so shattered and so torn up and so uneven…so upset. there simply arent words sufficient to describe the pain, the torture.

the defeat.

we went out and had a fun day of hiking and seeing many beautiful falls…spent about 10 hours on the road today and we took many pictures, some people commented on how it was nice to see a smile on my face…yes i agree. but if you only knew that even at that exact moment i was thinking “we shouldn’t be here…Conner would’ve never been able to walk this far or climb this trail…but we are…only cus he’s not here”

but he was there…

rainbows….red…

 

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thank you Connerboy for showing up today and making this trip with us. a trip that your earthly body would’ve never allowed…but one your heavenly body now can do with ease…bless you my dear…bless your suffering and god bless your reward in heaven…

oh buddy i miss you terribly….

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