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

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....

The trip of a LIFEtime

Gosh...I'm not even sure where to start. my heart is swelling with the love that was shown to us this past week, that will live with us our entire lives. There's simply too much to tell. The stories of generosity, support, and love from family and complete strangers alike. This trip far exceeded our greatest hopes and Conner's greatest dreams. Pictures really say it all, and we took, almost 900 of them on our own cameras. But the grandparents took more as well.

He saw whales, whales everywhere...he saw lava...he went in a helicopter, he went swimming with the dolphins and fed them fish, he received a lei greeting, he swam in the ocean and pools, he saw a hula show, he went to an authentic luau and saw the fire dancers, he saw his dad and mom do the hula on stage, he saw his papa attempt to blow a conk shell to start the luau, he saw what humidity does to his baby brothers hair (CRAZY!), he went in the cockpit of the hawaiian airlines plane and learned to fly, he got the pilots REAL pilos wings (not fake ones..his own real one), he saw a mongoose, he saw plenty of beautiful flowers, he saw black sand, he saw spinner dolphins and bottlenosed dolphins, he went on a whale watching cruise, he saw the entire island by helicopter, he joined the thousands of locals and travelers who write their name in the black lava with white coral rocks by writing out his name to be there for years to come, he had a Hawaiian pastor pray a healing blessing over him, he left his footprints in the crystal white hawaiian sand, he buried his dad in the sand at hapuna beach, he picked out gifts for his friends, he had time for lots of hugs and kisses for his family, he saw water as blue as he'd ever seen, he saw Gods beauty and grace everywhere, everyday, and every minute.

I can't even begin to say thank you to those who helped us get there by prayer, support, money donation and grace. Conner received over $530 from people we met on the island, when they met him and heard of his story and struggle. People were just so generous to our family. Their generosity made his wish of swimming with the dolphins come true, another persons generosity allowed him to buy the hawaiian airplane he had his heart set on, another generous gift allowed us to be able to go to the authentic luau, another gift bought us meals for the airplane and tonight for dinner just the 5 of us. he was able to get and do everything he wanted. Yet he shared with his brothers and family. His heart is so generous.

There simply aren't enough words in this world to describe the way I feel about this trip. The way we all feel about this trip. How greatful I am, how I am the luckiest woman in the world that I was chosen to be his mother, how blessed I am to be able to hug him and kiss him whenever I want to...to know he's ours, if even for just a moment longer.
No, I'm not a dancer, but to fulfill his wish of me doing the hula in front of an audience was a no-brainer for me. I got to see him smile because of that. Who cares that I looked ridiculous. To see the smile on his face for getting to bury his daddy in the sand which he's been talking about for weeks was heart warming.
Yes he struggeled a bit to breathe, sure he wasn't feeling very well for most of the trip, and of course he missed out on some amazing island food because he was too ill to eat but oh my gosh...he did it! what an amazing journey. He got to do it! and he LIVED every minute of it to the absolute extent of his abilities. He cherished it. He loved it.

there's simply just too much to say, too many stories to share. and simply not enough time or even the words to speak it aloud...just know that God was ever present on this trip, I felt him from the tips of my fingers to the tippiest of my toenails. He made this possible. He brought these amazing experiences to reality and planned them out so perfectly. because he loves us. because he's there for us. because thru all our struggles these past years he's proven to us without any doubt that he infact, will NEVER leave us. and we, as a family will never be the same again.

simply amazing