HELP SAVE A CF'ers LIFE

Once again I wish I had some magical, wonderful post to update you all with but I don't. Infact I am writing to "pay it forward" to a cf'er who has been in a dire fight for her life.
Jordan.
Right now she traveled across the country and is in CA awaiting new miracle lungs. It is costing her family everything they have, and she hasn't even HAD the transplant yet (awaiting a donor). Her family is all staying at hotels since there is no Ronald McDonald house there, and she is in the hospital...they are paying 100% of their expenses for food, gas, and a place to stay trying to save their girls life.
Conner had no second chance.
Jordan does.
I am writing to urge you to do your wonderful "Conner Love Deed" and donate any amount that you can (TRUST ME even $5 adds up if enough people do it!) and help this family to save their daughter and spare them from the agony of CF's defeat.
It kills me to hear of other families suffering from the monster that stole our son....
I will be donating...will you??? Please donate AND spread the word, life is more precious then you will ever know unless you've lost it...

http://jordansjourney.chipin.com/jordan-ulrich

Blessings,
Sarah

the fight

I went to see him today.

i couldn’t stay.

i started to have a panic attack.

i hate it there.

i can be there to take care of his flowers and balloons and to keep things orderly…

but i hate it there.

standing ontop of him. like he’s some kind of bug. like he never meant anything to anyone. knowing that i will never again get to feel the warmth and tenderness of his earthly hugs and snuggles…heavens never seemed so far away then it does today…so so far away.

i miss him.

desperately

it’s all consuming

overtaking everything i do

overpowering my every thought

overshadowing every activity

everything in my world revolves around him now.

i miss being needed in the way conner needed me. those with healthy kids won’t get that…but you out there like me, know what i’m talking about. cf is an exhausting disease with hours and hours of therapies and medications and treatments and appointments and iv’s and hospitalizations…it takes special people i guess to be able to juggle all of that and remain a teeny bit sane…i’ve never complained of doing the job of saving his life…because it meant we were still in the game. he was still alive. i miss being in the fight. while i still fight cf its changed now. because it had to. no longer weaponed with an arsenal of medications and machines, now i have only my two hands to type, my one voice to speak, and my heart to advocate for a cure. i miss the “life” fight…

i hate that life seems just too easy now. not emotionally but physically. day to day having only two healthy kids is almost boring. it’s just too easy. they have no medications. they have no breathing treatments. heck our biggest daily fight is what they’re going to wear that day…whats that? it’s nothing. i’m left no longer able to fight to save my sons life because i lost him, to now having to try to physically and emotionally raise these other two precious lives when i have no clue what the heck to do with them. theyre simple. never again will i be willing to hear some excuse of why people with healthy kids are late somewhere…it’s nothing compared to the fight conner and i had to fight each and every morning just to leave the house…up an hour early to squeeze in treatments to run am errands and home just in time for the next one…it was complicated. but fantastic. and beautiful. and cherished. because i was still able to touch him. to hold him. to kiss him. to hold his hand while he got blood draws. to play with him in the hospital, or to watch tv movies over and over and over again with. to enjoy pajama monday and library monday with him. to simply smell him…

i miss him whole heartedly and desperately today. and i’m bitter. how in the world did all of this happen…

i wish i was still fighting…

“happy” anniversary

There really aren’t words to describe today.

I was busy kicking CF’s butt all morning with a hugely successful Scentsy show…

but then…

it was over.

reality came.

i drove home…grabbed brad…and went to the floral shop to pick up connermans “monthaversary” bouquet.

it was beautiful.

reds, blues, whites…a dori fish on it..perfect

spent about 40 minutes or so with brad just sitting at conners place. it was so quiet and peaceful.

but our hearts were anything but peaceful.

the day passed in a blur. we filled it with busyness and i even took a 2 hour nap just to make time pass quicker…

but now its quiet

its still

our kids are home and they’re sleeping in their beds

my busyness is done for the day and i have to rest in the quiet.

and i hate the quiet now.

i hate that he’s gone.

i hate it.

i hate all these stupid firsts…

its reliving his death OVER and OVER and OVER…

to you God I’m thankful that tonight my beautiful son is there holding your hand, helping you collect my tears. To you Lord I’m thankful for my two living, beautiful sons and my wonderful husband..and I guess even the dog maybe…to You God I put my faith in, i cannot do this alone…never have…never will…but please lord my only wish…is to feel Conners presence each time the sun shines on my face, each time the wind tickles my arms, each time the rain pours out on me lord…i can’t live without him…

tomorrow is a new day

and thank god for that.

 

don’t don’t don’t

stop it stop it stop it…..

why…

why…

every single day is getting harder.

harder to breathe

harder to sleep

harder to concentrate

harder to think of that day, the most horrible day in my life

harder to concentrate

harder to sit still

harder to drive

harder to not cry

harder to not get mad

or pissed

why am i in so much pain

why do i feel so alone

are people afraid of me

do i look like i’m gonna bite

why am i left to try to figure out who my friends are

people say they are, but then why am i sitting here alone

i don’t get it

i should probably mention this…i’m not mad at anyone…i’m just pissed off…even if people were beating down my door i’d still be sad and lonely.

my son is gone.

how can that be

why is everything becoming more difficult

i have pictures of him all over the house

i smell him

i feel him

i have tv shows that used to drive me crazy that conner saved on my dvr and i can’t bring myself to delete them…but because we need to save money mr cable man is coming tomorrow and taking our dvr and replacing it with a different one…so guess what…those shows will be gone

sound ridiculous?

each and everyday i’m losing yet another piece of conner…not him in the flesh cus ya i realize he’s gone…but his laundry is no longer there for me to care for, his placemat is no longer at our dinner table, the chair is empty, his toothbrush is still in the holder, but my cupboards are full of applesauce that he used for his medicine, my med cupboard is bare, his booster seat sits empty in the car, his smell has faded from his bed…

he feels distant

i hate that i go to see him and i’m standing right ontop of him. it pains me that, that is how close we can be now…

it isn’t fair

it isn’t right

my heart is beyond broken it’s shattered

my dreams for him are fading

my brain is so foggy i still hardly know what day it is…i measure time in Thursdays…

tomorrow…

tomorrow marks one entire month.

my angels gone. one entire month.

i feel i could vomit at any second

my head is pounding

my body is beyond exhausted

i can’t imagine it getting any better.

why why why

why couldn’t it have been me

why couldnt i save him

i wish i could’ve traded him places…take me…at least i’ve lived 30 years…7 isn’t even really living yet…

each time i see a picture i instantly think of where we were in that photo and the memories of that day and its THEN that i realize he’s gone…all this empty time hasn’t truly sunk in yet because i’ve been keeping myself so busy…so busy

my kids went to gramma and grampas today and she asked if they had any meds and i just started laughing…uh ya just allergy meds if they need it… to me thats simply crazy

i look back at some of the last pictures we have of conner…the poor angel. i can’t believe how tired and horrible he looked as i’m sure he felt. i can’t believe i didn’t see it all happening….i knew where we were headed but man it happened so quickly.

back to school stuff in the store makes me wanna puke.

no 2nd grade

i’m so broken.

so lost

so done

so over this

so exhausted

so lonely

so…nothing really

conner baby…keep walking with me, keep holding my hand…stay with me…i can’t do this w/o you baby

That club…

so its official…

i got my invite to the elite club

the one not just anybody can join

the one with no standing rules

the one nobody likes to talk about

the one where the other members celebrate each step like putting your shoes on the right feet with you because they know it’s a BIG DEAL

the lonely club

the somber club

the “leave your smile at the door” club

the club your friends just don’t get and never fully will unless they too are forced into the club

child loss club…

you don’t get some fancy, shiny card to prove your membership…the look on your face is proof enough

the club where your free to walk the lake at night and cry in front of complete strangers and not feel ashamed of it…cus your grief buddies will understand

the club where nobody tries to “help” you feel better by saying such insensitive things like “at least you had him as long as you did” or “you look good today it’s nice to see you feeling better” or “this too shall pass” and “at least you have your other children” cus members of this club realize those statements aren’t fully true nor make you feel better

members of this club know that grief isn’t a set period of time. its not a timetable. theres no magic wand to make it “all better” and members of this club know how uncomfortable that makes some of the “outsiders.” it’s hard to see someone grieve…but don’t try to rush it

this club recognizes the most caring, compassionate things outsiders can say are “i’m so sorry for your loss” “i care about you” “what can i do for you right now” and the such…

this club strives to keep it’s membership numbers low

members know firsthand it’s better to reach out to us and possibly say the wrong thing, than to not reach out to us at all.

members recognize no two grieving people are the same nor is anyone’s grief greater than anyone elses.

members recognize that each and everyday is a struggle. that everywhere you go and everything you see and hear are constant reminders of your loss. there is no escape…that makes it so difficult

this club is a lifetime membership

can join by exclusive invite only

members must learn to tell time by “before death” and “after death”

and most of all to be a part of this club you have to pay the highest dues price you can ever, ever imagine…

good grief…

sucks to be one of em…but here i am anyway.

 

i dunno

i don’t know how i’m feeling today.

my heart feels empty.

my day just drags on

the birds are chirping

the kids are laughing

the sun is shining everywhere but in my heart

where is conner?

why can’t i take care of him any longer?

i’m only human and i can’t take losing a son…i know god knows my pain exactly…but thats why he is god and i am not. i can’t handle it the way he can.

it’s quiet

its lonely

its isolating

he’s almost been gone one month…

how did that happen

this saturday is one month

went out to dinner last night with my boys and husband…it was so quiet

there were no enzymes to pack

no oxygen to tote around

no 7 year old son to carry in and out of the restaurant

there was no breadsticks to order for him

there was no conner

i’m trying so hard not to be bitter…so hard

but my heart is shattered beyond recognition

i see his pictures and my heart rips to shreds

my chest hurts

my soul crumbles

my eyes water

my lips twitch

i have to remind myself that its ok to feel these feelings

that its ok that piece by piece my grief is coming to a head

that its important to try to move ahead

but today i’m mad

i’m glad gods big enough to take my anger because im pissed at him

for allowing conner to suffer

for allowing us to love him in the most intimate way possible just to have him taken away

i’m mad at all this silence

i’m broken

but i trust in him.

the plan is perfect

it’s bigger than you or i

but having faith doesn’t make it less painful.

god never promised us a life free from pain

and i think i got that message loud and clear

i’m mad, i’m sad, i’m bitter, i’m relieved, i’m joyful, i’m thankful, i’m confused, i’m lonely, i’m broken but i’m trusting in you god,

all that i have is for you…

everyone life is going on and moving forward

and mines just taken a HUGE step backwards…

and i’m shattered

and i wish it all would go away.

red lego...

another red lego day...

last night was difficult. brad and i were up late crying and talking and sometime argueing over misplaced anger..and just missing our son. i woke up still with a heavy heart this morning. i got in the car and headed to see conner at his place, a friend told me there was a few things there for me to get, so i wanted to go first thing.
i was just sad the whole way there...i hate that i know that drive all too well now. i hate that when i come to the last curve before the cemetary entrance my heart jumps to my throat. i hate that when i start up to the right and up the hill i look over to conners spot from afar and my sadness instantly consumes me. i hate it. i hate that i pull up into the same spot i always do. i hate that the grass placed over him is a dead giveaway of just how new this all is. i hate thinking of his body just beneath my feet and sometimes my knees just sitting there...alone. i hate it all.
i couldn't stay long this morning, i grabbed what i needed and i simply had to leave.
it was too much.
i went to the store to get a card for todays babyshower...i went home to change for church.
brad and the boys were not coming with me..
i changed.
attempted to pretty myself up..my heart full of sadness...
i walk out the door and towards my car i just recently parked...only home maybe 15 minutes tops.

there it was.

a bright red shiny red lego resting in the grass right in front of my car door. i ran inside to show brad...and we laughed again. our son is so thoughtful. it was perfect timing once again.
this one i put in my purse and went to church with it and held it the entire service.

3 red legos so far...on 3 very difficult days...
connerman mommy loves you so much.

Beyond the clouds

he’s with me everyday.

this morning i awoke and grabbed the laptop and opened up facebook to get my am dose of whats on everyones mind…over in the right hand corner where they have that space saying “reconnect with so and so…or heres an ad for so and so…”i usually don’t pay attention… his face was there. LARGE. with no name, no question, no nothing. a huge picture of just his face that i don’t even recognize taking. i didn’t want to leave the page…but eventually i had to…so i haven’t seen it since…

i jump in my car and each and everyday he plays our 2 songs for brad and i. we used to call each other each day and say hey guess whats on the radio…then we realized we didn’t need to. Conner made sure the songs played almost daily while both of us are listening. the songs are “i can only imagine”? by mercy me which we’ve always loved but was also sang at his funeral. and the other song is “everlasting god” by lincoln brewster. its about the scripture in Isaiah i believe 40…where it talks about flying high on wings like eagles and trusting in the lord…and if you’ve been following me a bit…that verse i’ve had as a status update more than a few time in the last year..i’ve clung to it. and pastor john last weekend said that verse came to him to read…i never mentioned it was the one thats getting me thru…and conners buried in the soaring heights section with eagles nests and eagles flying over him…it’s god…only him.

i feel strange.

like wondering what its going to take for this all to really start sinking in. the night he died i was a mess. i cried i feel for like the first time in my life..true, gut wrenching crying. screaming to god. in anger. in desperation. in love. and now i will cry off and on but it’s different its not really crying. it’s just tears. they come out of nowhere usually when something reminds me of him. but i haven’t really cried since watching conner leave our house for the last time and i wasn’t the one carrying him. so i’m afraid of whats to come. i know i am not ok. not even close to ok. but then why do i feel like i’m in a fog? must be a natural defense or something. i know i need to try to grieve but how can i when it all doesn’t seem real. why is it so easy for me to hop in a car and go see him each day. how can i possibly be ok with that?

whats wrong with me?

why cant i feel this yet?

still staring at those boxes of kleenex…unused. it’s just strange.

the best i can explain it is that it just feels like he’s at someones home. then i’ll remember that he’s gone but my body doesn’t allow me to feel it. strange right?

i still must be numb. not denial cus i know he’s gone. but i don’t get upset with all the quiet. i don’t think about all the meds i should be preparing or any of that.

when is it going to be real? i see others cry over him and then i’ll comfort them with tears of my own as well…but yet i don’t feel it fully. connerman and i had such a strong bonding connection we fought together day after day, and night after night. my life, my job, my world, everything revolved around his care and his appointments. how can i possibly not realize the gravity of it all yet? how can i casually look at his empty booster and not freak out? how can i talk about him each day with a smile on my face? how can i be planning his memorial garden in our yard without the reality of it sinking in? why…when…

i know he’s gone. i do. physically he’s gone. but emotionally and spiritually he’s right next to me all day long.

don’t get me wrong i’m not complaining that i’m not a psycho momma yet but i know the longer it takes to even start grieving the longer it will be before it’s over…well never over…but at a functional level…

You’ve been so generous…

I have to reach out to you today. There is a fabulous organization based out of my hometown, Olympia Washington, and better yet founded by a wonderful woman who shares my first name, Sarah Morris.

It is called Breathe 4 Tomorrow Foundation. It is an organization that recognizes the importance and desperate need for a cure for Cystic Fibrosis but strives to help the CF Families with unforseen expenses that come about due to this horrific costly disease. Sarah herself has Cystic Fibrosis.

Breathe for Tomorrow Foundation has helped out many families since receiving their non profit status. In the last 5 months along Sarah has helped out many CF families to the tune of over $25,000. That is truly amazing. She has helped pay peoples monthly mortgage, for medicines, for astronomical hospital copays or bills and has made a huge impact in the lives of so many in the CF community.

She has impacted my life as well, greatly.

In the midst of losing our son last month, Sarah generously reached out and paid our mortgage payment for July fully knowing that it is a gift we could never repay (nor is it expected or even asked for).

So I need to do my Conner Love deed for today and pay it forward to her.

Sarah is fantastic. She is passionate. She is driven. She is inspired. She is compassionate. and she needs our help.

 

Breathe 4 Tomorrow Foundation solely exists upon donations. This is one of the charities that we put to donate to in Conners honor in his obituary. I simply can’t sit back and watch other families go thru extreme financial hardship because of the disease that robbed me of my son without any help or support from Sarah Morris.

If i know you the way i think i do…because you have been so generous to me…

I pray that you will join me in making a donation in honor of Conner Reed or even your loved one today!

She needs our help.

Lets pay it forward and pass it along to others in our contacts as well.

because we all know a cure is important, but if you can help families while they’re waiting for it, that is money well spent.

blessings!

go to http://breathe4tomorrow.org/ and send some love her way!

it’s thursday

3 weeks.

21 days.

504 hours.

30,240 minutes.

he’s gone.

my head is pounding today. my throat is scratchy.

i feel like i’m getting a cold and i wouldn’t be surprised if I am.

my immunity is shot right now.

my body is vulnerable.

i’m vulnerable.

i’m caught in the numbness of thursday. 3 weeks ago waking up a little earlier than this knowing that it was only a matter of hours now and not days. spending the whole day in bed…love love loving him…always always always.

watching him slip in and out of consciousness from the carbon dioxide taking over every square inch of his lungs and blood. watching the beat of his heart press hard into his chest. watching his chest rise and fall so sharply. in and out of a co2 coma…waking up here and there panicked…looking for us…

his eyes said it all.

he was scared to be alone. but mommy and daddy were right there angel baby. we held him close. we kissed him all day long. we loved him. we took care of him. it was our nightmare coming true. we were living it. we as parents were going to survive but our son would not. our dreams for his life were dyeing that day too. there would be no 2nd grade, no high school graduation, no first girlfriend brought home, no college, no wife, no grandchildren…no miracle cure in time…

it would all end.

and it did.

i will never look at thursdays the same way again. its the day of the week i dread the most. forget mondays. going back to work on a monday is nothing compared to living thru the thursday

your angel died.

perspective isnt it?

please friday come quickly…and please conner hold my hand today…

HE IS HERE!!!!!!!!!!!!!!

Oh my goodness.

Oh my goodness.

I’m so excited I can hardly contain myself.

I’ve heard before about different people receiving love from beyond heaven…but I admit I was partially skeptical. Only because it’s never been something I would’ve ever had any experience with…but it’s happened.

Three nights ago my husband and I got home from Vancouver, it was dark outside. We grabbed the boys took them inside and we went back out to get our stuff from the van…and Brad stubbed his toe on what we thought was the uneven pathway…he looked down and picked up a red lego piece…we both thought it was bizarre because we’d been gone for two days and they’re the bigger legos that we really don’t have many of anyway. But in my mind I thought oh my it’s Conner. I’ve been sure his heavenly home is made of red legos. but, i brought it inside still skeptical and put it in a secure spot where nobody knew where it was.

The next day I talked to a girlfriend and she had been at our house the day before and had her son with her and said he was playing with legos upstairs in conners room so then my heart sunk, thinking that he probably had the red lego still and dropped it there.

Well tonight was difficult.

Today was difficult.

today was Brads first day back to work, and while he made it thru, it was a very difficult day for him.

and for me…tonight was my first CF Family Council meeting since the night before Conner passed. I walked back into the hospital that we’ve considered home away from home and the smells and the memories overwhelmed me. i went on the floor after the meeting and hugged some nurses and volunteers and listened to how they were all so devestated when they learned Conner passed away. I left feeling very upset. very melancholy. very much not ok. i started driving home and i noticed the beautiful moon tonight, a simple sliver in a beautiful shade of orangish yellow and then i noticed a huge bright star next to it. then i realized it was the only star in the sky…i smiled a bit feeling still so overwhelmed and said…”hi conner i hope thats you” and the star followed me all the way home and left sight as i pulled in front of the house. I take a deep breath to kind of collect my emotions and start walking up the drive and

TRIP!!!!!!

I looked down and it was a red lego in the same spot where we found the other one. I choked and picked it up and looked in the sky and said “are you kidding me?” and i kid you not…clear as day I heard Conners voice in my ears saying “its me mommy”

i run inside yelling for brad who can’t hear me us he’s upstairs playing xbox. i go up there and ask him if they’d been outside today and he said no. i said ok anyone go out front since i’ve been gone and he said no. it’s just he and bradyn, hunter is at his cousins house for a few days and so i knew he didn’t have it there…i said “brad…i found another red lego” and we both started laughing. i mean mouth dropped to our ankles laughing.

i ran downstairs to where i placed the lego from a few days before and IT WAS STILL THERE….

this was the exact same red lego piece…as the one we found on Sunday.

My heart is swollen with love. this couldn’t come at a more perfect day as today. it was horribly difficult and connerman is simply sending us his love from beyond the clouds…

and please…i know how this may sound cus i was in your shoes not too long ago when I’ve read about others peoples “experiences” similiar to this…but I will never in my life ever doubt it ever again.

simple red legos can make the biggest difference in the world…

connerman I love you baby!

Living Hope Church weekend

On Friday I was asked to speak at our church about Conner’s legacy of love. The services at Living Hope Church are amazingly powerful. My husband and i have been loving attending that church for years. Even before we moved close to a campus of the church, we’d always stop in while we were in town for one of Conner’s many CF appts. in Portland, OR.

I had one day to prepare.

Literally.

They asked on Friday evening. the first service was Saturday at 5pm.

ONLY GOD could prepare me for what was to come.

Each service the dynamic changed. The vibe changed. The need changed. But the story never changed.

Never.

the theme….LOVE

the goal…to wait on God and realize that when you’re in the MIDDLE of your story or circumstance is when god is closer to you than ever. That is when your faith is tested and tried the most. That is when each decision you make is either for Christ, or for giving up on Him. Being in the MIDDLE there is hope and love.

“Conner’s no longer in the middle…he is with Jesus. But Brad and I…now we’re in OUR middle….clinging to God alone. Knowing that while none of this makes much sense to us right now, we fully KNOW that GOD IS GOD no MATTER what…and His plans are perfect…and they are to prosper us and not to harm us”

I pray your life will be touched in the very deepest part of your soul just as mine was.

Enjoy

and ONLY GOD

http://www.livinghopechurch.com/group/lhc/media_video/player/767

Love Love Love

 

65 prickily red roses and love

I received this in a FB message this morning and it was simply too beautiful not to share. Bree, blessings to you, this made me smile with love which doesn't come often these days.

I touched a red rose that day
over and over again
feeling its cool velvety petals
I touched that red rose
took deep breaths and
smelled every molecule of scent I could
stood in awe of its beauty
and felt Gods grace in its precense


I touched a red rose that day
no romance in this touch
not thinking of love in a red roses usual way
not given to me by a handsome man
but instead clipped by me
in remembrance of a beautiful boy
I thought of love in his way


I touched that red rose
over and over again
and thought of him
red his favorite color
and roses his life
65 prickly roses leaving scars on his body
taking his very breathe
but still beautiful still God in every way


I touched a red rose on that day
his last day
traced its veins with my fingers
and thought of love
Gods and His
pure and open
heart wrenchingly strong
leaving us stunned and wide eyed
searching for beauty and peace and grace
I touched that rose
and felt connected
I inhaled slowly and felt


love



In all my sadness

all the pain in this life

I touched that rose

breathed it in

thought of that angel earning his wings

overflowed with tears

and felt love
Gods love

I’ve never been so homesick…

we were never created for an existence on earth…i know it’s only temporary…we are dust in the wind, i get that. i’ve never been more thankful for that then after losing my angel.

being alive while my son is no longer with me…the pain and the constant swing of emotions are overwhelming. I simply can’t wait for that miracle day when god tells little old me “well done” and Connerman is the first one to greet me and welcome me to heaven. I can’t wait for him to show me our heavenly home which i know will be made of bright red legos. Losing a child puts a whole new spin on this life. I no longer worry over death. never. i completely agree with a dear friend who says that after losing her precious daughter that she no longer worries over flights…she knows that when it’s time…they will be reunited and that will be gloriously amazing. I get that. that is me 100%

Don’t get me wrong i am not suicidal. i am dealing. i love my husband and my two beautiful living sons…I am simply saying that by losing Conner I’m truly gaining a wonderfully unique perspective of eternity. And beyond all the worries of this world i simply can’t wait to get there now…to be with conner forever. and ever.

I miss so much.
Losing him has caused a shift in the world i live in. I stare at his empty carseat booster.

his toothbrush is still in our holder next to mine.

his laundry is no longer being washed or cared for.

the piles of neb cups and syringes and sharps containers are gone. i miss them.

conners side of the couch is forever empty.

i no longer hear the sounds of those annoying shows he watched: Wizards of waverly place, chowder, suite life on deck, adventure island, tom and jerry, garfield…i miss them

his seat at the dinner table is empty

i open the fridge and no longer see a sea of chocolate boost plus or vials of caysten and pulmozyme in there for him

i miss buying him icee’s at target or vanilla frosties at wendys

i miss taking him to the hospital and clinic

i’m strugeling to learn how to live w/o the SSI breathing rules down our necks.

I laugh that we no longer need prior auths of meds…

i think it’s crazy that now my kids only have one well child check each year. only maybe 5 dr appts a YEAR now…that is absurd

i cringe remembering our ob doctor trying to get us to terminate the pregnancy.

i hate seeing the buckets of sidewalk chalk sit in our shed unused…that was conners favorite thing to do…color on our cement

i hate that seeing red will always make me think of him…because now i notice it far more often and it makes my heart hurt

i hate feeling like i need to find a new way to replace my time that was spent trying to save conner. nothing seems worthy of that time.

i hate that i bought big rubbermade totes to pack up connermans clothes in to bring to hunters room since he’s now the same size as conner was.

i need to explain my heart. mothers will all understand but maybe haven’t thought about this…

my pain is deeply personal and intense.

i carried conner in MY body for 9 long months. I nourished him. i fought for his survival. i took the pain of those foot long needles that were inserted in my abdomen time and time again to help conner survive in me. i gave birth to him. i fed him my milk. a mothers bond is unique and different than any other bond there is. multiply that by a million when you have a baby that the doctors kept urgeing you to terminate b/c of health issues, and spending weeks on end away from home for appts all for him, and any mother with a high risk pregnancy knows that connection. when you want him to survive so bad from the time of his conception and came up to roadblock after roadblock and knocked them down one at a time. to spend each and every day he was in the hospital with him but maybe 4 maximum in 7 years…to research 24/7 for him, for getting out of state 2nd and 3rd opinions for his survival, for pleading with pharmaceutical companies to release research drugs to your son…and then to see it all fail.

like none of it mattered.

i said goodbye to my son.

i have to now say goodbye to the cf doctors

to my former existance

i have to define a new me

my fight and passion died with conner.

not my fight against cf…simply my fight for his survival. my determination to save him.

but for a mother to say goodbye to a child whom i fought for from day number one with every ounce of every fiber of my being, i simply don’t know where to begin…

i carried him.

i loved him

i fought for him.

and now he’s gone.

and he took my heart with him…

oh baby boy…

come back to me sweet prince.

please.

i know you’re happy and i totally know how completely selfish my request is…but please…PLEASE come back to me. just for one more day. one hour. one minute.

i need you sweet boy.

my heart is in shreds.

i’m trying.

but i’m getting nowhere.

mommy and daddy miss you baby…

i miss snuggeling you in my bed…listening to you breathe. i miss waking up all hours of the day and night to help you to breathe with your inhalers, or hook up iv’s, i miss needing a baby monitor hooked up so i can hear you if you called my name. i need you baby boy.

nothing is right without you.

not. one. thing.

 

two weeks down a million to go

without my angel baby.

i’m pissy.

i’m tired.

i’m done smiling. really…nothing to smile about right now.

my heart is hurting. acheing. how can it possibly be ok now?

damn it conner stop teasing me. stop talking to me..stop reminding me how much you love me. because i love you endlessly. but i’m broken. and i can’t be fixed. it’s a tease my dear to hear your sweet voice or to see all this damned red everywhere. my heart is on overload.

time has stood still for me for two weeks now. each day passes just like the one before it. maybe a meal here and there, every once in awhile a shower or a load of laundry added to my checklist…but damn it nothing else stops. nothing.

death is not a stop sign.

death is a pass go collect NOTHING sign…

nothing.

but grief. anger. sadness. tears. smiles. memories. frustration. short tempers. memories simply aren’t enough my dear. i’m so off and on. one second fine, the next i want to crawl into bed. i want to shut down. i want everyone to simply shut up. really. just shut up. what the hell could you possibly have to complain about? a busted toe? try a broken heart. the ULTIMATE broken heart. your head hurt? wow…how i feel sorry for YOU…give me a damn break. i would give anything…EVERYTHING for my baby back.  if even just long enough for one last hug and kiss. anything. stop stamping your damn feet at your kids because of YOUR agenda. kids are kids…they are late by nature. you need to reorganize YOUR priorities. stop smoking your damn cigarettes and killing your beautiful lungs. damn it stop it! how selfish can you possibly be???? not only are you voluntarily CHOOSING to kill your lungs but your taking away any possibility of a beautiful soul needing and using your lungs to simply breathe. stop staring at me like i’m on display. i know i'm a wreck and i look like crap. you don’t need to remind me. and for gods sake STOP APPOLOGIZING!!!!!!!!!!!!!!!! I know your sorry. i’m sorry. we’re all sorry. god i sound like a freak show i know. i’m not one drop mad at anyone. for anything. i just need to scream.

the scariest part of all this is knowing that it’s not fully real yet. i look at the boxes of kleenex stacked on just about every surface in my house and most of them are unused. so i know the shit hasn’t even begun to hit the fan yet. my husband goes back to work half days starting wednesday and i’m scared to death. i can’t even take care of myself how the hell am i gonna take care of my two babies?

why in the world doesn’t life simply stop…give me a chance to try to exhale and catch my breath a bit? how can i grieve the most intimate loss of my lifetime while the world still spins…bills still arrive…back to damn school sales start…vacation plans drag friends away…

i haven’t really fully realized how much free time there is now. no more 25 treatments per day anymore…no more hours spent hooked to ivs or the vest or nebs or tube feeds. its all been done.

my job has ended. i have been fired.

and there is no unemployment benefits for me … just misery.

c’mon conner man help me.

help me.

help me.

i love you baby boy. always. damn it. always.

Scents for a CURE

I wanted to invite you to my new venture...Scentsy. I've been in love with these for quite awhile now, and since we're no longer under strict money limitations from SSI I've decided to start selling it...but more than just sell it...
I'M DONATING WITH EACH SALE TO THE CYSTIC FIBROSIS FOUNDATION!!!
check it out and happy shopping!
http://scents4acure.scentsy.us/

also...
friday is the last day to place your order for this years walk shirt Conners Angels tshirts. All proceeds from the sale of these shirts is going straight to CF...email Trish at triciarodman@aol.com

love love love

today…

I was able to eat two small meals. A huge accomplishment.

I got out of bed before 11 am. an even bigger accomplishment.

I was able to take a shower without tears.

I made it almost an entire hour awake without crying.

I felt like everyone I saw knew what I’d been thru…felt like everyone was staring at me.

today i took a brief nap.

today i chased hunter in the park causing him to laugh like he hasn’t in quite some time.

and it made me smile.

i humbled myself and cleaned up dog poop in the bathroom…TMI i know…but hey every tiny bit counts now…

today i wore my FUCF shirt that I love. because i couldn’t feel more agreeing on that if i tried. FU  CF!!!

today i’m realizing already how quickly i’m forgetting the sound of his sweet voice…

today i looked for him before realizing he wasn’t there

today i got angry at him for leaving me, turning my world upside down. i’m so mad…

today i picked up his death certificate.

i also picked up the pj’s he slipped into heaven wearing from the funeral home.

today my arms literally ached to hold him.

i longed to smell his hair. hold his hand. breathe his breaths…

today i found new pictures…and FYI these are not for kids to see…they are of conner at his visitation…but i find them beautiful…

top of his casket…hand painted

My days are empty and long. i spend each moment hugging my two children still with me. Hunter says these pics of Conner are of his angel body. Oh my sweet 4 year old how much he misses his brother.

oooh but today my love, my sweet angel boy i miss you to peices. and my heart is so utterly broken…

Love Love Love

Always Always Always

a week…

One week ago…

wow.

one whole week already.

exactly one week ago this moment I was laying in bed with my angel baby, Conner, dyeing of lung disease. One week ago my friends and pastors were in my house sending up prayers and giving us unconditional love. one week ago my friend Sonja was mixing morphine and lorazapam for my angel, so that his last breaths this side of heaven were pain free.

i remember it as if it were yesterday.

an entire week ago.

it’s now starting to sink in.

the shock is wearing off.

i’m a mess. an absolute wreck. this past week has been simply details. planning. sleeping a bit, eating even less and simply breathing. yesterday it was done.

and today….

i’ve learned of beautiful tributes to my son all over, and my heart is full of love. so intimate these lessons i’m now learning. i’ve never been a very good sharer…but with Conner it wasnt ever an option. his smile, his warmth, his passion and determination…it was beyond this world. i always knew that. wow that he chose me. wow that god trusted such an amazing soul to me. simply amazing.

i spent my day in line to buy 20 copies of today’s paper with conners tribute article in it. i went to starbucks where i burst into tears over a woman wearing a red shirt drinking her coffee. my heart flooded the countertops at the social security office as i took care of the business of his passing. i walked into target to purchase more sweats so the laundry piles could be allowed to pile up when the quiet comes and my stomach nearly made me vomit. i went to see Conner at his place, well our place when i get there to join him…and i felt still. i went to the bank to add a friend to our accounts because i’m in no condition to add 2 and 2 together. good thing too because i only had $9 in there! the lady asked if i was doing this because we were going out of town…my heart said i wish…but my mouth said simply “no my son passed away and my brain is done for now…” we cried together…complete stranger, unsuspecting bank teller and grieving mother.

a week ago.

my grief is so overwhelming.

really, truly a week without holding him. without kissing his warm, breathing lips. a week without seeing the rise and fall of his beautifully skinny chest. a week without endless treatments. a week without special feedings, morphine, nebulizers, vest therapies…a week without having to call the cf clinic. oh my god it’s been a week.

7 days…

7 days without my 7 year old. oh my god…

hunter is taking this so hard. he’s balling unconsolably. his pain is so intense and so heartbreaking. how in the hell can a grieving mom even attempt to console a grieving child. a grieving brother. a best friend? “brudder hunter….”

i’m snappy with brad. i’m in a fog. a daze. i want space, but i don’t want anyone to leave. i crave quiet but nothing right now scares me more than quietness. my thoughts are overwhelming.

conners friends are struggeling now. and that breaks my soul. as an adult we get it. we know it hurts immensely but that one day it will get easier (this is what i’ve heard so far i don’t believe it!) but kids live in the now. they don’t know how to cope. and that is killing my heart.

conner is in my dreams each night, he’s in my mind all day long, and he’s talking to me constantly. but its such a tease. it’ll never suffice. he’s free. broken every chain that held him down…but now i’m left to pick up the pieces. i’m left to figure out tomorrow…and the next day…and the next. and i don’t know how to. i really don’t want to. the quietness is coming so quickly. i pray my children and husband can forgive me for whats to come. my world, my each and every day revolved around conner. his care, his med refills, calls to the doctors, insurance, pharmacies, daily online research, med after med after med, cleaning the nebs etc…they’ve stayed home while i took conner to the hospital or to clinic visits. when this quiet comes, how will i cope? how will i fill my time in a way thats worthy of it? those precious hours spent administering meds and life prolonging therapies was time fighting that damn disease…and now nothing seems worthy to fill that precious space.

my fight against this disease never seemed real until now. when you’re in the fight, with your kids or with yourself it seems like you’re fighting. but i tell you the truth…not until you’ve lost it will you ever truly know what it means to fight. your precious children, your precious parents, your precious bestfriends, your precious breaths my friends…i’m fighting so much harder now. truer. until my dyeing breath, oh that sweet last breath away from my angel baby, i will dedicate every free second of my life truly fighting this monster. raising awareness. raising funds. passing bills. talking to my senators and representatives. calling news media, writing a book my friends…WHATEVER IT TAKES!!!!! i will not end. until i end. and even then….

one short week ago. cf stole my conner reed. my angel. my fighter. my champion. my firstborn child. my light. my love. my hope. my determination. my everything…

god…

looking at the clock in just over 30 minutes from now one short but LONG week ago my son took his last breath. one week ago brad and i were holding him close in our bed trying to talk him into leaving this world. he kept stopping breathing, then a minute later would gasp and again continue to breathe. such a generous boy, didnt want to hurt us. but we kept telling him to leave. we kept telling him jesus was there waiting for him. we kept telling him we’d be ok without him…one week ago.

“so far away from where you are. these miles have torn us worlds apart, and i miss you….”

“so far away from where you are. i’m standing underneath the stars…and i wish you were here….”

“i miss the years that were erased…i miss the way the sunshine would light up your face…

i miss all the little things….i never thought that they’d mean everything to me…. ya i miss you….and i wish you were here….”  (lifehouse…from where you are)

i better go. i can’t be on here writing when his one week “anniversary” arrives…

oh conner angel…i wish you were here…but i know now that CF stands for CONNERS FLIGHT… love you.

love love love

 

Love Love Love

I had the priviledge of speaking at my sons life celebration yesterday and by the grace of God these words came out…

Love love love

Not really sure where to begin because a mother’s love starts long before you ever see your child. Conner I’ve loved you from the time I was born from my own mother. Forever ago and forever, always. Seems like it was just yesterday your daddy and I found out we were pregnant with you. I’ve felt your peace and your strength ever since. You and I are connected. Not with any visible chain but with the strings of our hearts. Bonded. Knit together. Your fight was my fight. Your struggles were my struggles. Your joys were my joys. Your determination was mine to share. You modeled for me a new way to live.

A better way.

The Conner way.

I’m so grateful for that. Your love for me had no grey area, no borders, no beginning and no ending. I’m so thankful that you and I continue to have that connection even in death. I hear your sweet voice though you’re gone, continuing to remind me of whats important and what is only details. I see your love for me thru the people you’re sending my way each day. Every personal contact with each one I see each day is someone you’re sending my direction. I could never even begin to understand just how perfect a soul you are, how you’re still watching over me and loving me and protecting me. It’s funny. I thought as a mother I was supposed to be teaching YOU the lessons. Now I know I’ve had it all wrong all these 7 years. My sweet prince, my angel baby…my heart is full of the greatest sadness and the greatest joy I could ever have imagined. My soul aches, my arms are craving to hold you once more, my heart is breaking to feel your love in the flesh. My ears are burning to hear your angelic voice say you love me once more…but…my soul is so glad you’re gone. A soul as precious as yours never belonged to this world, nor to me or to your daddy. You’ve always been Gods son, simply on loan to us. My heart is so glad you are breathing freely, running without hardship, and that you are free to simply care for us and love on us from way beyond the clouds. I could never imagine the hardships you’ve so gracefully endured. The pain. The fear. Oh my sweet prince your purpose and calling was so much bigger than I ever could have dreamt of 8 short years ago when you first became mine…heart to heart. My dear angel your job has only just begun and I consider it the greatest honor of my life to speak about you now to all of these souls who love you so much as well. Until we see each other on the other side my angel baby…mommy loves you endlessly…

My dearest friends here today. I know just how you feel. I know your pain. I know your hope. I know your unending love. But these tears aren’t meant for us. They could never be. Imagine for a moment living your life without having ever had the opportunity to meet our angel. The love, the joy, the sadness, the worry, the peace that we would have missed out on. These tears are simply temporary. They are an attempt to bridge the gap from life to death, to convince our minds of what our hearts know as the most amazing pain imaginable. But with every sunrise and with every beautiful sunset he is with us. There’s no other place he’d rather be. God knew more than anyone that this world could never hold him. That his spirit and love was simply out of this world. His earthly body failed him miserably but God never failed Conner.

He lived a life of passion and purpose, he loved with every single space in his heart, he breathed with every single ounce his lungs would let him, fully knowing that his time here would be short. He always made sure to let us know how deep his love for us was and still is. He laughed with his best friend Hunter until his lungs burned; he sang quiet songs of worship in the very back seat of our car. His heart always wept for the sadness and pain that this world has brought upon so many with this disease, his soul screamed for a cure. Yet he understood that for him, the cure would be death. To breathe free he’d have to say goodbye for now to his family and friends, but he was fully willing and ready to do that. His heart simply couldn’t handle watching his disease and pain hurt us any longer.

His mission was simple.

Love.

Teach the thousands who considered him an angel the ways of the Lord. His love, strength, kindness, patience, perseverance, determination, compassion, smile, happiness, and sense of humor were a few of his greatest attributes. He loved wholly, lived fully and breathed in life deeply.

It’s never goodbye my friends.

Never.

With every speck of red he puts into your every day think of him. With every kind child you see think of him. When you see legos, transformers and kids running in laughter think of him. Whenever you hear him speak into your heart, know that it’s truly him. When you get a sudden chill or goose bumps know its Conner holding you close. Know that the greatest day of his life was the day he left this world. Free. Know the tears we shed and the pain we feel is only a tiny fraction of the joy and overwhelming happiness that he’s feeling now. This world simply was never big enough…his spirit is heavy on my shoulders, his love is deep within my heart and his smile is the warm sunshine on my face like angel kisses. Hug your kids tightly, truly live each day, don’t wait for your salvation because Conner wouldn’t want that, be patient, love whole heartedly, laugh as much as you can, give freely of yourself to others, and just as I whispered into his ear his entire last day alive, and even as he took his last labored breath love love love. Always always always.