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.

Terrific/Terrible Tuesday

Conner’s having problems with his breathing today. He’s been laying around all day. Now he’s finally sleeping next to me in my bed. He asked today to restart his IV’s…I’m so glad he made it a week and a day w/o them. He was able to bathe, and be free of IV’s, though he wasn’t really up and walking around at all. Still, emotionally and physically, he got to really ENJOY his days without antibiotics.

But today he says no more…

I called the docs, and either tomorrow or first thing Thursday he will have his PORT accessed with that huge push pin needle in a way that is so brave you’d be SHOCKED…and we’ll restart antibiotics to booster him up. and hopefully help him to feel a bit better for awhile.

Family came to visit from out of town today, my dad and his wife and her grandma from Hawaii, Nana. Nana hasn’t seen Conner since he was maybe 2 or 3. It was a great day for a visit. The little boys played in the pool and had a great time. and mr. conner laid on the couch inside most of the time. He was able to come out and lay on the outdoor couch in the shade for about 20 minutes. so that was nice.

Now he’s sleeping.

And I’m watching him.

closely.

And praying over him.

For peace. For no pain. For breath, deep breaths. and good rest.

a fund has been established...

well...i've been asked a few times to post this on here so as to maximize the donations. this is so very heartbreaking and morbid.
a fund has been started for Conners funeral expenses.
I did not start it.
Another cf mama did that for us, and I have to say that it has lifted an extreme amount of pressure and stress from my husbands and i's shoulders. Last week I started the agonizing process of calling funeral homes and talking costs and options etc and I hung up the phone so discouraged.
here we have been shelling out money for CF expenses for the past 7 years, and a high risk pregnancy for Conner to boot. Money is an issue for us as well from SSI limitations etc. So to know that at least part of the funeral can be covered w/o having to charge up credit cards has lifted a burden. I will post it on this post and add it to my site here as well...no pressure....only gratitude...



we are in the hospital right now, just got in a few hours ago. Conner man is having excruciating pain in his back. We are here to get a head start on pain control with morphine to transfer care home to ourselves or hospice...
we are waiting for xray now, they're going to make sure he doesn't have any stress fractures as well as run urine to rule out the possibility of the kidney stones....
i'm prayerfully hoping that we can make our beach vacation trip from the church this weekend...the goal with the doc is to get in, get his pain under control and go home. so i'll keep you updated....

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...