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.

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

Conner Reed

Conner Reed Jones April 14, 2003 to June 24, 2010.

He earned each and every feather on those beautiful angel wings of his...

Breathe free sweetheart...mommy and daddy love you so much....

pain by any other name wouldn't be as sweet...

So enough has been enough.
i feel like i am swimming in this huge pool and can't find my way out of it....but the pools not filled with water...it's filled with my tears. my heartache. i'm just broken. i've never been one to wear all of my emotions on my sleeves, not that i was too proud or embarrassed to but simply because I still have 3 children who come with lots of responsibilities, projects, dressing changes, diapers, groceries and house cleaning to boot. Never really had time to wallow. But well i guess i don't feel i'm wallowing. maybe thats not the right word.
grieving.
I hate that word. it means so many, many things. and at so many different times as well. my grieving sometimes is laughter and smiles cherishing the moments i'm engrainging in my memory to remain there all my life with bittersweetness in those moments...and sometimes i'm just tripping on my bottom lip. i literally can't pull it up to where it should be. my smile has really faded. my heartache has nearly multiplied by a thousand. my days it seems now pass by so much quicker because Im so aware of each and every second passing by. Time is running out. but my love isn't. i feel now more than ever that i truly know what it is to love my children and to love my husband. i KNOW it now. not just that giddy feeling you get, or the instant love you feel when you first hold your precious newborn in your arms...but the deepest love you can ever imagine, but that you can never imagine until you're watching it slip away. faced with death, you really learn to love. fully. wholly. unconditionally. deeply. selflessly. painfully.
i simply haven't been able to write lately. since mothers day i've been struggeling. i'm just not me right now..only i am me. a new and different, grieving me. a me, i don't really like. and i don't blame others if they don't really like me right now either. i'm lonely. desperate. hopeful. wishful. exhausted. my mind is a wanderer lately. i hate this too. sometimes i sit in some line or in some crowd and i witness people being so rude, probably unintentionally...and sometimes i wish so much i could just scream...others have no clue what crosses you bear. if you didn't know my story, and you saw me, you'd see a somewhat put together woman, with a smile on my face and a joy and love in my heart...but you wouldn't have time to stop and see the agony in my eyes. going thru this has taught me so much. so so much. i will simply never be the same. and i hope for that in a good way. because this pain is so deeply intense, and everlasting as it may be, i know these lessons i'm learning as invaluable. and that i wouldn't have forced myself to learn them any other way. the greatest lessons from the greatest pains...makes perfect sense. cus now i get it. i just wish i could learn these lessons another way. any other way.
i've called to have the hospice team come over and give me their list of can and cannots...
that was an extremely difficult call to make.
but i think necessary.
my arms just ache to hold conner all day and all night. but i simply cant. i have come to need much time to myself. me and my ipod walking the beautiful lake here in town just allowing myself a breath of fresh air. i'm investing in my children who will be survivors. i'm trying desperately not to let the stress of all of this put a wedge in my marriage.
i'm simply doing the best that i can.
thats all we can do.
i think josh's message yesterday on whats inspiring really hit home to me. what i'm doing is not inspiring. at least not to me. but what is happening THRU my pain is inspiring....
well i'm off for now, a beautiful day here and conners calling for me to help build legos...
until next time...

God, Love, and lifes true meaning...

We have admitted Conner to the childrens hospital now. I woke up, read some of my great book which I HIGHLY recommend to those with end of life kiddos called Glorias Angels at Starbucks, attended church and then brought Conner man in to the hospital. Uhg. The smell of this place. Gets me right in the stomach. Is it bedtime yet? I'm emotionally exhausted. My mind is racing around 1,000 times a second...thinking of things I wish nobody had to think about, worrying, wondering, sadness...overwhelming sadness. I believe in God, and I fully know He's holding us so close to him that he's carrying us right now...but man...I wish that gave me peace. A sense of relief, anything...but the never ending "why's" don't go away just because you know and trust God. Kids shouldn't die, plain and simple. Parents shouldn't have to be thinking these things and filling out DNR's and shopping around for fairly priced funeral services. It's not natures order. It's the complete opposite of order. I feel very loved from my friends, family and the CF community as a whole...I really do...but I need to allow myself some honesty.
I'm pissed.
Beyond pissed.
Why in Gods name is my seven year old son dyeing...while there are so many other idiots in this world trying to kill themselves selfishly? Why is that dumbass down the street smoking, and KILLING his lungs to look cool yet MY SON is lyeing in a bed, barely breathing, because he doesn't qualify for new lungs. Why do people complain about the stupidest, small, insignificant things....I mean really?! Lets put life into perspective people. Stare at the face of your precious child, or your very closest loved one...gaze DEEPLY in their eyes...study them, feel the absolute LOVE that you have for that person...feel how you'd do ANYTHING for them...really FEEL IT. Close those eyes of yours and reopen them and now see them as desperately ill...and feel the helplessness in not being able to do one damn thing for them but watch. It's a feeling so hard to explain but allow yourself to feel it. It is horrible. And no words could ever do it justice. People stop complaining over the stupid, insignificant small shit. STOP IT. it doesn't matter. Don't allow yourself to get caught up in the unimportant parts of this world. You and I were made to love. Whole heartedly love. To have amazing relationships. To put another before yourself, well ALL others you meet above and before yourself. This isnt a dress rehearsal and it sure as hell isn't high school anymore people. We are not indestructable. We bleed. We hurt. We die. It's true and it's horrible. but yes, it's true. Accept it. But don't accept the untruths of life. Don't accept that life is about stuff. It couldn't be farther from the truth.
Life is ONLY about one thing....LOVE.
I'd do anything humanly possible for my son...but truthfully...I'd do anything humanly possible for anyones son. For anyone. I've learned more in the last horribly stressful year about life and I know for SURE that if God gave his sons life for us, that we had better start respecting that. Start living in that. Each and every single person you see every single day is someone who God knows, created and loves deeply. He would do anything for them...every single one of them. So I've learned that our job...(well I can't speak for you...)but that MY job is to do any and EVERY thing possible for anyone. anytime. always. I see someone crying and I pray for them, not much but something. Someone drops a paper, well gosh the LEAST i can do is show them love, Gods love, and pick it up for them. See this is all that matters.
Acts of service.
Acts of respect.
Acts of pure love.
I hate being stuck here in this hospital, and I'm scared to death about whats to come, MUCH sooner than I ever thought acceptable or possible...but then I look around and I'm stuck here in this huge hospital and there are hundreds of people much worse off then I am. Much. So how can I waste a day complaining about everything...
Heck, even looking at my son is a slap in my face. I have breath. You and I were made for something that cant and won't make any sense until our last breath. It doesn't make sense now. but one day it will.
I can't allow myself to get caught up in all the unimportant parts of life. It's not what life is about. I feel your love. I feel your support and your prayers. I feel it. Deeply. With every fiber of my being I feel Gods love and trust in His plan even though to me, it's so cruel. and so heartbreaking and devestating. but I know it will make sense.
In the matter of one week I've met over a thousand new people. I've recieved thousands of emails, messages, and phone calls filled with love and support. My blog went from maybe 3000 views to over 14,000 views...Conners story is being told and he's being prayed for in many MANY countries and in many states and in many different languages, people have shown up in their truest form, doing everything they possibly can to bring a smile to my dyeing sons face...showing him LOVE. If thats not Gods hand, I don't know what else is. My heart is breaking...yet at the same time it's being restored. So complicated. So confusing.
So God....

Trying to catch my breath...

Today was just kind of a wierd day for me. Full of ups and downs, and stress and happiness. Which is kinda funny, because it really has NOTHING to do with christmas in 3 days...I've had my presents purchased, wrapped and under the tree since black friday...yep Im one of them...I've learned I have to be. We got out of the hospital the day before thanksgiving, and so even though i was sick i got up at 3am and stayed out feeling crummy until i had everyone taken care of, because my son's health has been so up and down this year i knew i had better get it done. We also bought our xmas tree that day and got the house decorated that day, because last year we were in the hospital for the first half of december so we didn't get any decor out. So this year i was proactive, and good thing because we wound up in the hospital again two weeks ago and stayed a little over a week before going home on IV's. So this year we do get Christmas, I made sure of it....

Conner's IV's ended today, and while this should make me happy (and in a little way it does of course!) now the worry begins...i hope he can stay well thru Christmas, until we can restart IV's next monday...for his make a wish trip jan 11-16th...

today i got conner's itenerary for his make a wish trip to hawaii emailed to me, and it tore me apart....LITERALLY. i cried reading it, I am so thrilled for him to FINALLY get his one heart felt wish to come true. honestly, i always knew he could do make a wish, but i thought i'd wait til he was older and could really find the ONE thing he wanted more than anything...but since the docs urged me to do it when i met with them a few months ago...(another story for another time!) i knew i had better get on it! many kids want these extravigant fun filled trips, and we will have a great trip in a great location but get this, his wish was to "relax on the black sand beaches of hawaii" that tears me up. he is 6. he should want to visit disneyworld, or sixflags or legoland, you name it, but his wish is to relax. that is so precious...and heartwrenching. while in hawaii he gets to fly on a helicopter to tour the island and to see the volcano and lava...and he gets to go on a whale watching cruise. i am so thrilled for him. there is also 3 days where we get to do whatever we want to, well 3.5...so i've found hawaii's BEST black sand beach...he deserves the world. and while i am excited for this, i wish more than ANYTHING that he didn't qualify for make a wish, that he had a greater prognosis...that CF was a disease we simply have heard somewhere before. unreal...pinch me....i MUST be dreaming that this is infact OUR life...

today home health company came and delivered his new bipap machine.

ouch.

let me preface it by saying that I am thrilled that after 2 months of fighting his insurance gave us the ok to try it out for 3 months...and I am thrilled at the possibility of it breathing for my son in a way so he can get a more restful nights sleep, hopefully helping him to have more reserves to fight off his frequent infections. Conner's ok with it, he is not wearing it tonight, he picked his favorite of the 3 masks and we're cleaning it and all the tubing tonight and maybe tomorrow he and daddy will have "star wars jet fighter" night...to help him feel comfortable wearing it. i pray it will work. i am hopeful. If anyone's had any bipap experience i'd love any advice you have to help him accept this. this kiddo has put up with so much and he is so brave, and i want to make this the easiest transistion possible. but it still hurts me because it's yet another step in the wrong way of his disease progression...first i cried when we had to do home oxygen at night, i never wanted to have oxygen in my home, i never wanted it to get that far...and then it not only become an everynight thing it has slowly crept into more and more days as well, and now the bipap is coming into the mix at night with his oxygen...and my heart is just heavy.

i can't remember the last day i made it 24 hours w/o crying. he is so strong. he is strong for me. i can put my brave mommy face on...but not 24/7...the pain and the worry is making me very impatient and irritable. Pray for a deep breath of fresh air for me....a renewed energy. a renewed focus. a new drive...a new sense of purpose...a new fight in me!

tomorrow night we are taking the boys to the portland international raceway to see the big christmas light show. they are very excited and i am very excited to take them. and gosh then it is christmas eve!!!! who can believe that?! already!!!

do you know that this time last year, since we had no real xmas at our house from being in the hospital, i actually thought "gosh, i know next year will be better!".....how could i have known the heaviness that would consume my entire soul only one short year later. the worst year of my life. the worst year of conner's life. the way i have distanced myself from people i know and love. the overwhelming sadness in everyday, yet at the same time the absolute HOPE in each second i spend with my son, healthy or sick. How could i have known that just one year later i would be consumed with the thought of losing my son on a daily basis. i have to say this mom gig is the absolute hardest job i could imagine. and since none of my friends and family can TRULY relate to this grief i'm feeling (and i PRAY none of them EVER will!) i feel like i have 10 foot walls surrounding my heart, my pain. and i refuse to let anyone in fully. i can give snippets into my pain and life, but the darkest parts i save for myself alone. It is so hard not to get upset when i hear the dearest of friends or strangers say things like "gosh today was so horrible, my kids were fighting, on and on and on..." cus REALLY?! you wanna hear about a HORRIBLE day?! i could sit you down and make you SPIN in the heaviness of each day in our lives. And i know all families with CF can do the same as well. and whats more, all those cliche sayings i used to hear all the time and not think twice about are my heartsong these days.

Live each day to the fullest

tomorrow is no guarentee

all that matters is family

it's the little things that mean the most

the most important things in life aren't things...

on and on. i honeslty feel a bit fortunate though to have had this epiphany. a glimpse. a fast forward to the day when Conner earns his angel wings and is no longer suffering here. as horrible as that makes me feel to even think it...i feel so blessed that my perspective has been so radically shaken and changed...i live and breathe my sons. my husband. the five of us. my real family. my heart. my life.

someone show me the way to the OR, I'd lay my life down this SECOND to save my sons life...give him my lungs so he can take ONE breath w/o lungs clogged with mucus and inflamation and infection.

but...i know i can't. i know he can't. so i will keep my brave mommy face on today and into tomorrow and we'll see what kind of fun we can have!!! cus thats what mommies do... ;)

just another day in paradise...