watching...

Spent the better part of today watching Conner sleep. Breathing in and breathing out, just laying there exhausted by the energy requirement necessary just to breathe. trying hard to stay one step ahead of this wreched disease progression. Constantly worrying.

I'm so exhausted....

Each day blends into the next...it waxes and wanes and I feel like I'm wasting valuable time in my delirious state. But I am so tired. I wish I could waste one whole day in bed, sleeping. But I know that even then I'd never be caught up.

I just wish for peace....

I want for all of this to end. I don't want my son gone...but I need peace. I need to figure out how I'm going to handle the rest of my time here without him. I'm a planner by nature, and as much as I'm getting done and prepared for when my whole world crumbles, I feel like this is something I can't plan for.

The devestation...

The heartbreak...

The inability to breathe...

To not be able to think...

or form sentences...

or clear thoughts...

I simply can't imagine what it will be like to not be able to hold him in my arms whenever I want to. To look over at him laying on the couch next to me with his beautiful gap toothed grin, with his bright, piercing black/brown eyes...gazing at me. I just can't plan for that...so the constant worry over it, is simply overwhelming me. and exhausting me to the core...

I wish our days were filled with more...

Not sure really what that means...just something more than laying around watching him breathe or sleep...or giggle at a cartoon...I so don't want any regrets. Nor do I want to push him beyond what he's capable of. Everythings getting harder...the days are passing by faster..and my heart is breaking deeper then i ever knew possible...and i just need peace.

only sweet peace...

cry much?

so my therapist told me tonight that i don't cry enough. that i am not modeling for my children that emotions are ok and how to deal with them. so here's the thing....
i cry.
but on my own terms.
i happen to think that just because i'm not a blabbering mess all the time that it shouldn't mean that i dont cry. i do. but crying doesn't get 3 kids fed and going, or meds done, or feeds done, you know? so yes i do cry. but i feel that why waste precious time crying...and worrying about the future and conners declining health...because i could be spending that time making family memories right? you only get one shot!
but i think that just because i dont' cry to release my emotions doesn't mean i don't feel them. doesn't mean that i'm ok. doesn't mean that i'm not trying to deal with it all. it just means it's not me right now.
maybe i'll get there.
maybe i won't.
docs worried that if i dont allow myself to feel this grief right now, that if i keep pushing it to the side to get thru the day, that when that horrible time comes she's very afraid of what my reaction may be.
i can see that. makes sense.
but i guess for me...ya i know where we're heading, and i'll have all the time in the world once we get there to wallow in the grief of it all...and i do have days where i'm emotional and that i cry over stupid stuff and that i'm too stressed to see straight...but i don't wanna dwell in it. thats not who i am...
just cus i don't cry doesn't mean i have it all together...
but it also doesn't mean that i have a handle on it as well...
it simply means it's me.

"Why is gramma so sick?"

Those are the words Conner asked me tonight at the dinner table. Brads gramma Shirley in Idaho has been hanging onto life by a slim thread this past week in the ICU on a ventilator. She's had moments where we thought she wasn't going to make it, then miraculously she'd wake up a bit to acknowledge the visitors, so it's been quite a roller coaster of a week. Well tonight, she gave up her fight. She passed on about 2 hours ago now...which brings about a very wierd mix of emotions, worries and feelings. Brad is very distraught, naturally. And I miss her terribly already. I feel a bit better knowing that now she's another angel watching out for sweet Conner along with both my grandpa's, my great aunt, and brads other grandma among others. Because we could really use all the divine intervention we could get! but now...


Now we have to figure out how to bring up gramma GG dyeing to our sons. We were planning on talking to the kids about illness and dyeing with everything that is going on with Conner, and now it's going to be very real. a very intense talk. Because now it's not taboo...it won't be a "someday" you will die type talk...it'll now be "today" your great grandma died...etc and im so very worried about that. Talking about death never was something that I felt would be easy to do, or for Conner as well, but now it's real and now it's going to be even more difficult.



He asked at dinner why is GG (great gramma) so sick and in the hospital...and Brad has real emotion right now having just lost his grandma...so now i'm very concerned about this discussion. and I'm just not sure what to do

Lordy, if anyone has any advice or ideas I'm all up to listening. Because I feel so confused just thinking about it.

Please pray for strength, pray for me, for brad, for conner and hunter and please pray for the entire Erikson family for their great loss tonight. And may GG Shirley forever rest in peace.
(GG surrounded by Michelle, me, Tammy and Jenny)

Blog numero uno...the introduction

So here we are a new beginning. I have decided to cross over to the dark side so to speak...to blog. To have a space in my unraveling world where I am free to just be me, say what I wanna say, and at the same time be free to be honest. No holds barred...
I am a mother.
I am a wife.
a daughter, a sister, an auntie, a cousin, a granddaughter, a friend, a confidant, an organized OCD freak, who sometimes gets lost in the shuffle of life in the Jones house of boys! I have real honest emotions that attack me every chance they get. On any given day I am happy, fearful, sad, pissed off, hopefully optimistic, frightened, worried, ok maybe overly worried, but I somehow manage to hold it all in. Along with all of the above, I am also a full time nurse, full time stay home mom, full time respiratory therapist, full time medicine and appointment scheduler, full time boo-boo kisser and bandaid applier, full time researcher...phew...

I am a mother of a child with Cystic Fibrosis...

you can get caught up with my son's medical history at his caring bridge site at www.caringbridge.org/visit/connerreedjones for background on his story and our journey, but this site is my site of freedom. With this site I am allowing myself honesty. To cry when I need to cry. To scream when I need to scream. To vent when I need to vent. My son is very sick...and I need this for my sanity, not so much for people to read as it is for me a great way to journal my frustrations....get it out of my head so that maybe i can catch a few z's at night (HA!)

I am doing the best that I can juggeling all of this, but it has become apparent that in CF (cystic fibrosis) there is a lack of the big, dark, horrible TRUTH. Cf is a DEVASTATING, horrific disease with no cure. NO CURE. Life with it isnt always as "Bright and Shiny" as the CF foundation wants you to believe. I am on a quest for more information. Better, more honest answers. I will never give up hope that CF will one day be cured, and I will always fundraise towards a cure, but I pray that it will be soon enough for my son. Uhg. There it is...the very un-bright and un-shiny Cf that I live with everyday.