Beauty...

I can hardly stand how beautiful the weather was this entire weekend. It was Gods grace and Gods love shining down in those beautifully warm rays of sunshine. We didn't do anything too exciting, projects around the home...I delved deeper into my love of all things gardening and created a little hide away for me to just sit and simply...be. I love it.

It's not quite finished, I'm going to string some lights out there so I can sit there at dusk or whenever and just kinda be...this garden right now is my life. It's a sign of new life and new beginnings of course...it's a story of reusing what we already had within us...and it's a story of peace and hope and love. The border rocks are actually concrete my husband broke out of our walkway, the wooden planter box is built from extra fence boards by my husband because he knows how much I love to plant and garden. There are bird feeders and a bird bath so our kids can sit and watch them. And one of the plants that I have planted is called a bleeding heart. Because that is where I am these days...how fitting.
We love to be out in our backyard as a family, but the sun can be so piercingly hot for Conner, so I went and got a umbrella and a table so he can be outside in the shade with us with his O2 near by.

But you'll see he's laying on the couch instead.
He didn't get off the couch much this weekend at all. His body is tired. Even on 4Liters of o2 he gets completely winded even walking to the bathroom from the couch not even 10 feet away. It's been a very difficult weekend. Emotionally. I just feel so robbed. I keep getting glimpes in my head of life without him in it. I'm terrified of that. absolutely terrified. I find myself unsure if it's morbid to figure out all of these decisions that will have to be made when he does leave us. I just know I'm going to be an absolute mess and the last thing we'd want to do is think about burial plots etc...but I don't want to waste time here and now doing it either. precious time with my son. I am stuck in between two worlds and neither one is completely appealing...life without my son in it or life with him suffering in it.
and that sucks.
As a mom I try my best to do each thing I possibly can for my children...and I've never been told that it's not enough. that it'll never be enough. that no matter how hard I try, I will not be able to fix the way he is broken. While I completely know it's not realistic...I feel a failure to him in that respect. I know it's a disease that I could've done nothing to prevent for him, and absolutely we've done all we can for his health...but we've failed still.
Conner has such a tender heart for his family, for his brothers especially. The day I shot the picture of him laying on the couch outside watching his brother play was Thursday while it was just him, me and Bradyn. Bradyn was playing in a little bit of water with some toys and Conner wanted me to take a picture of him with Grover because he said he just loved them so much, and that Bradyn was so cute...


Snapping that picture for Conner so he could see it up close because he was too weak to get up was absolutely heart wrenching. This is just happening so fast...I mean I know it's not really... it could be months or whatever of this...but to me...just a few weeks ago he was walking most days oxygen free until bedtime...and now...he's on more o2 then he's ever needed constantly and he still doesn't have the energy to walk.
This is just surreal.
No other way to explain it. Like this is all a movie I'm watching. I'm just lost in all of this. Conner asked me to sleep with him last night, Brad has been for the past week or more each night, so I felt special it was my turn.
I don't think I slept much more than 4 or 5 hours tops. He was wimpering in his sleep. His breathing with the bipap was loud and forceful. But I did my best to just hold him as close to me as I possibly could and just breathe him in. Just be in that moment as long as I could. It was beautiful and difficult.
He's just so little. His my firstborn child. His body is so tiny and fragile now. He knows whats going on with his body changes but he won't talk to me about it yet. So i'll just keep trying. I need him to know this is ok. That when Jesus is ready for him, we'll be sad, but ok without him. I need him to know that if he's too tired to stay here, that he doesn't have to hold on just for us. For our pain. Because thats selfish of us. He hurts. We ache. Such a delicate balance. I need him to know over and over and over again how much we love him, how proud we are to be his parents, how from the moment of his conception, his father and I fought for him to live, to breathe, to exist, to laugh, to grow, to play, and to live the fullest life as possible. Who knew that could be accomplished in not even a decade of living...
I only hope that when I say to him that I'm going to be ok...that I really can be ok....

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

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...