God provides....

We've been home from the hospital for a full day now. We've settled back in, got unpacked and everything washed and sat for a few minutes before dragging it all out and repacking it again! Only we are so excited that we get to! Tomorrow we're leaving for the beach trip that was so graciously provided to our family by Living Hope Church. Thursday thru Monday in a immaculate house right on the beach in Manzanita, OR. We are so blessed and so thrilled to be going. Not only are the accomodations taken care of for us, but they gave us a HUGE tote full of beach toys and sand fun, kites and bubbles galore. Our kids are more than excited for this wonderful distraction. Life has been so difficult and mundane, just going thru the day to day motions, this couldn't come at a better time. We all need a good distraction and some very quality family time together away. I had a garage sale last weekend and managed to sell enough stuff to more than take care of our food and gas needs for this trip, so that too is a huge blessing. We're taking Conners pain meds and his IV antibiotics along with his other daily medications oh yes and plenty of oxygen to get us thru this trip very comfortably. Much like Conner mans make a wish in january to hawaii, this is giving our family something to look forward to, instead of the everyday lull of watching him struggle. I know many are reading this from Living hope church and my heart just needs to tell you thank you so much. For blessing our family in the time of the greatest need. For praying for us. For loving us. Our cameras are charged and ready to shoot a million pictures and at least 3 hours worth of dvd's...nothing matters more than family.
Last night Brad and I met with the local hospice, and we still decided its not for us. For some it's great, but their limitations don't fit with our therapies for Conner. But they are extroidinary people there, and since our home health nurse is in that same office they'll just tailor to our needs as far as the bereavement groups and counseling, and keeping his pain under control all while having the flexibility of doing home iv's or even a trip to doernbecher if we so chose. we really feel so glad to have that meeting done, and our minds made up for now. We'll reevaluate as things change, but for now we're good. and that is very comforting.
Brad has taken all of this week off so he can spend time with us as a family and to try to manage the stress and grief he's going thru at this time. like me, it comes and it goes, and some days are great and others it is a fight to even get out of bed. so please pray for him that this weekend can help him to feel refreshed. Usually I'm worried about our finances if he misses work because we're a single income family, but more than ever, and more surely than I've ever felt or said before...

God provides.
He proved that to us without a doubt. He provides.
I pray you each enjoy your families for this memorial holiday weekend, and while we take time to remember those who've served for our country and to protect our freedoms...first and foremost take time to simply enjoy being alive. for family. for friends. and most of all, for God.
Love

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....

a break...

Conner man decided today that he's ready for a break from his IV leash...such a big decision for such a young person...although he's wise beyond his years naturally from all of this. This decision scares the bejesus out of me. I asked him gently if he realized that the IV's help him feel good and that w/o them he may feel bad again quickly and he said "ya i know mom..."
so there you have it.
I talked to hospice today, have to schedule an appt....and tomorrow i'm calling our local funeral director here that has come highly recommended and see what he thinks if theres anything we need to do before hand....
this.
sucks.

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...

GOING HOME!!!

Today is go home day for us....and we are very excited to do so. Over this past 8 days here we've met with each CF doc individually, both social workers, the nurse coordinator, child life, the chaplain and The Bridges hospice team. We feel secure in our right now plan, I'll call it. We'll continue the IVs for a week, bring him back to clinic and then decide then what the next step will be, and so on. I don't feel we're ready to make big, concrete hospice verses hospital decisions and I feel relieved to have finally realized that we don't need to yet. That nobody expects us to. That its perfectly ok to live in each day and when things progress, just go with the flow. I like that. So we'll meet the local hospice team and see what they're all about, and keep it in our mind, I crave flexibility. I don't feel comfortable yet saying home verses hospital. We're very connected to each one, for many different reasons. But I need to know it's ok to just have these conversations and over the next few weeks or hopefully months and MONTHS we'll just make each small decision as it becomes necessary...and it wont be as daunting as making one large decision right away. The Doernbecher CF team is extraordinary. They are compassionate. They are very loving and loyal. and most of all, they are heart broken over this as well. They are extended family by every sense of the word and to just walk away from them and not have them help see us thru every aspect of CF, the dyeing as well, is just unimaginable to me. You'd never probably understand that connection unless you've walked in it, which unfortunately many of you have, and I pray that more of you don't ever. But having intense doctors help and intervention since i was 18 weeks pregnant with Conner man and now 7 years later to just walk away from it all, is beyond my capabilities. They've been our miracle. These doctors saw me thru my pregnancy, they helped drain his little bladder when he was in my tummy struggeling desperately for life, they've seen him since he was brand new in the nicu and thru 26 different admits, thru his 105 degree fevers from the Zosyn, thru his rushed make a wish, and I simply can't live without them. and i'm so glad we don't have to.
So yes we are going home today from the hospital...not because he's well, but to just keep living each day and enjoy it and find the quality in each second until there is no more. and I think it's kinda wierdly beautiful. So he'll do another week of IV's then go to clinic and decide the next week and so on. and for now, that is the most perfect plan I can imagine. get out of here, and live our lives, fill his remaining time with experiences....fulfill his every wish and condense 60 years of living into whatever time remains. Such beauty i think. I think we'll all be better for it. Facing death forces you to live in the now and do each thing you can't make it thru your life without doing. and I'm excited to see where all we go...I do know though, that first stop is a visit and meeting with his best pal Grover here in Portland within the next week...Sesame is in town for some shows and Grover can't wait to meet Conner man. And from there...let the experiences roll..........
Love
Sarah

Hospice meetings today...

Today, well the past few days have been long, exhausting days. Honestly, I can't believe that I'm still awake right now but I am...trying to catch up on emails..but alas, I've given up for the night, with 78o still unread. wow. and I have to say all those pictures of your CF warriors are simply warming my heart, you have NO IDEA how humbeled I am that you all have responded and have put your trust in me in creating this. I have barely begun and already it brings me to tears. I think it's going to be very powerful indeed. And as soon as I get it all together, I will post it on here and my facebook so you all can have it for yourselves as well...simply a moving tribute to our little angels...

My husband and I met up with the Bridges organization here at the hospital, and they are phenomonal. It's an amazing team who pulls together all kinds of resources and hospice transistioning together. We learned alot today. And the thing I learned the most I believe is I simply can't believe others have gone thru this. My heart breaks for each and every person sending a loved one into hospice or even considering it. Over and over in my mind I kept thinking I wish this was easier, I wish it wasn't such a huge question mark you know? So many tiny details that I never would've thought of. Yet it wasn't overwhelming with information, it was very compassionate and very supportive discussions. I realized today just how much I'm attached to our CF team here. They are family to me. I've been working hand and hand with them constantly over the last seven years and the thought of saying goodbye to them and handing our sons care over to an unknown totally frightens me. So I think I can safely say that we're not going to. The bridges team is going to call our local peds hospice team and do some footwork for us, about what is considered extreme measures verses comfort measures to them, and to just get us information about them so we can decide if we even chose to meet with them. We dont have alot of time to waste on a ton of meetings, lifes too precious for that. So I appreciate all the bridges team will be working thru on our behalfs. They've been able to custom tailer hospice care before to fit a families needs to stay contacted with the CF team and also have hospice at home...and at anytime could still receive care at a hospital if something acute happened. It's all such a buraucracy, and insurance I'm sure makes you jump thru hoops, but I think we'll know what's best for us and for Conner before long.

We also discussed in depth with a child psychologist Conners developmental understandings of death and dyeing, and he gave me a book and some papers to read that will help us to know what hes thinking, feeling and ready to hear, which will be a huge relief. that is my biggest concern. saying too much and it scaring him, or not saying enough and having him feel like he's doing something to let me down. a very fine balance. and as i said before its all so very complex and i wish so much that it wasn't such a huge question mark for us, i wish it was easier. life though, right?

i was proud tonight of conner man, we got the bipap back in his room, he's been terrified of it and who can blame the boy? but tonight he put it on, with the power on for the very first time and left it on for 15 seconds!!!!!!!!!!!!! i was so proud of him...i think bipap could really help him sleep a more restful sleep at night and give him more energy during the day. baby steps....

it is late, and i should go to sleep, I will leave you with a great pic i got of conner tonight, his buddy got him night vision glasses for his bday last week and my hubby brought them to conner today and so he was wearing them tonight and the nurses LOVED it, not to mention he thought it was pretty cool himself...so i'll post it for your enjoyment.

thank you for the continued love and prayers...i feel them. for the most part i'm getting thru each day, and actually eating meals which i can't believe that i am able to...the only time i get "iffy" is when i sit down and discuss conners declining health, then my stomach starts to flip. but i know that because of your love and support i'm actually able to function like a human! and i owe you the world...

goodnight my newest and greatest friends....lots of love to you

I'm so lost...so alone and so scared...

Conner's again sick. CF sick. 104 fever, tied to his 02, coughing that nasty thick infamous CF cough, and feeling miserable. I called the clinic this am, and our RN is out on vacation...which I hate when he's gone, he's my trusted partner in all of this, the tie between center and conner. so i briefly told the RN filling in for Ben, that Conner was sick and when she started rambeling on and on about symptoms etc, I couldn't help but to just blurt out "just tell the docs Conner's not feeling well and they'll know EXACTLY what to do and they'll call!" well i wasn't trying to be rude. but gosh i wasn't about to go into all details with this fill in just for ben to return next week you know? so she must have paged them.
Dr. called me back fairly quickly...and I told him about Conner and since he's only on oral bactrim right now because we were supposed to be taking a break from iv's i asked what oral or iv can we restart....his response startled me.

"i think we're all in agreement at the center that it's time for a discussion about Conner with you and soon...I think we're way beyond what antibiotics to treat him with. i think it's time we discuss hospice......"

i know there was more words after that....

i just can't recall anything else after that horrible word.

So brad and i are meeting with the team this thursday (not wednesday of course cus that's conners 7th bday) so thursday am to talk the talk i guess.

my heart is torn wide open, i'm a blithering mess. bless trish for coming over to watch my kids i simply having trouble functioning...

hospice....