breathing is a privilege, not a right!

Ok bare with me, this might get a little bit ugly.

AAAAAAAAAAAAAAAAAAAAHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH!!!!!!!!!

Ok I feel a tad better. Lets start over shall we?!

Ok hello, it’s Monday…pajama Monday as a matter of fact…a tradition we started when Connerman was just an infant. Doesn’t matter if we’re staying home, cleaning, running errands or whatever…we stay in our jammies all day long. I love PJ Monday! LOVE LOVE LOVE!

We’ve entered a weird phase of Cystic Fibrosis recently. In the form of headaches. Really sounds like no big deal…until you realize that headaches in end stage CF are caused by a lack of ability of the lungs to remove the excess CO2 from them…causing the body’s PH to become acidic resulting in Respiratory Acidosis. Phew…thats alot of cf talk. So yes headaches. Conners having them off and on now. Usually a good dose of ibuprofen makes them disappear, for now. So I won’t get all panicky just yet. But yuck. We’re there now. His lungs are becoming unable to properly exchange his oxygen and carbon dioxide. Which will eventually lead to coma and/or death.

In other “bright and shiny” news…Conners handmade casket arrived to town last week.

I’m not sure how best to describe my feelings and emotions on that one. But lets give it a try shall we?

It’s beautiful. Handmade by a wonderful gentleman in Vashon Island area (Washington). He donated it to our family. Which was a HUGE burden lifted from our shoulders. Not sure if any of you have priced caskets but oh my…they are in the THOUSANDS of dollars range. My friend is going to stain it a medium brown color and then another dear person is going to paint a beautiful picture on it for us, and when the time comes, our family of 5…well 4 will leave our handprints on it for all eternity…so we’re always there with our connerman. But until that time comes I don’t want to see it. Or touch it. Or smell it. Or talk about it. I know where it is right now, and I won’t drive anywhere near it. Odd isn’t it? It is the most kind hearted, PRICELESS gift anyone could have ever offered our family…but I hate what it stands for. I love it. and I hate it. It will be perfect for our family, Conners personality will shine on this beautiful gift unlike the cold, sterile ones we’ve looked at that are so ridiculously overpriced it’s unreal. We are blessed. And we are cursed.

Conner sleeps more. He breaths harder. He panics more…oxygen related that is. It’s so tough on his body to travel. I’ve removed the high back on his booster seat, and recline his seat back in the van and put a airplane pillow (which MAY have come home with us on his make a wish trip in January…) behind his back so he can be somewhat comfortable. It really sucks. The time we can be out of the house is less and less.

and here we sit, defenseless. Helpless. Backed into a corner with nowhere to turn and no way to escape. I just can’t believe this is all real. I really cannot believe how much I felt like he’d make it. When we had these talks with the Dr’s a few months back, I kept saying and thinking…”if we can make it out of winter and into summer he’ll be fine!” because we all know how hard winter is on CF lungs. Lots of disease going around…but here it is…summer (well despite the WA rain…) and he’s not getting better.

He won’t get better.

I’m just not sure what to do. where to go. how to help. what to say. how to feel. how to best enjoy all of this.

each night when he sleeps next to me, i hold his hand and just watch him for what seems like forever, until my eyes are forced shut by sheer exhaustion. I keep thinking in my head how oneday I’m going to look back on this time and simply WISH I could do these things again. The little things we all take for granted. holding hands. hugging. kissing. laughing. loving. watching him breathe. all of it. i simply can’t imagine my life w/o him in it. i can’t. and i don’t want to.

Piper said something in one of her latest posts that really struck me hard. She said something along the lines of “I wish for all the CF’ers who are awaiting new lungs, or who will never want new lungs could feel how wonderful it feels to just breathe…”

wow.

How horribly true is that? You and I (most of you i would imagine) can breathe just fine. No need for oxygen supplementation. No need to take breaks from just walking up a hill. No need to lug o2 tanks everywhere you go. To go out in public wearing o2 proclaiming to the world just how much your lungs hurt. how lucky are we? I would do anything…ANYTHING for all of you with CF to simply breathe. It should’nt have to be a struggle. Breathing is supposed to be something involuntary that we don’t even have to think about, it simply is…

it’s so unfair that it’s not. for you. for conner. it’s not. it’s unfair that there are so many people in this world who do horrible things, but are perfectly able to breathe. It just doesn’t make sense. Like Josh said “don’t let your broken body lead you to a broken soul”…so SO true…

Anyway…don’t really know where I was going with this, or if there was any point I was trying to make. I’m just simply sorry. So sorry so many of you can’t breathe. So sorry there’s nothing I can do to help you. I can’t even IMAGINE what it feels like to not be able to breathe. I’d trade my lungs for yours. I would. I’ve seen too much of the horribly CF sufferings…and I know for sure that it’s horribly unfair. and unacceptable. And i’d gladly take it all away…and give you my lungs…

Breathing apparently isn’t a RIGHT…it is a PRIVILAGE!!!!

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...

a new week...a new hope

Gosh it's been awhile, I kept getting online to update and then something kept me from doing it. it's been kinda crazy here, with meetings, cf parents night out, appointments, bipap and iv's and plain ol living life. So now I have a second to let you all know things are going ok. not great, not horrible. thats all i can ask for these days i guess. Conner's been receiving lots of your mail and postcards and he LOVES it! thank you all so much for your generosity. I've gotten a map so I can start marking on it where you all live, everyone who loves and supports him. That will be great for him I believe. He always asks me if certain people who write to him are "in this world" so I think he'd really enjoy the map. As always your continued love, kindness and support are whats getting us thru this whole time.

Parents night out was a blast, lots of our cf parent buddies there for a nice dinner complete with wine (and I don't even like wine but this was yummy!)

Our GS walk is this coming saturday and our team is huge! We have I believe 6 teams nationwide this year and a few have already taken their steps for the cure! thank you for those who have, and to those who yet to as well. WE're knee deep in fundraising now our team is already over $4000 in donations and thats only online, not the checks and cash yet, so that I'm very glad for, and thats just our vancouver walk, not the other walk sites. Next up is the poker tournament my buddy Ryan's putting on (he's 31 with CF), another local CF walk, then our golf tournament for CF....busy time...but it's well worth it.

I'm sure you all know that last week we lost more precious lives to CF, I know we continue to lose people each day to this disease but that's the hardest part of reaching out and meeting the cf community. you make yourself vulnerable to pain. I would like to express my greatest sympathies to the families of Sam, Sonia and Emily...may they finally breathe easy and may you find the strength to keep fighting. Blessings to you.

Conner's due to end IV's tomorrow and we're going to clinic in the am to discuss if we want a short break, which would be great or if we want to keep going. Conner's continuing to struggle to breathe he's tied to his 02, last night at dinner he was on his o2 and still struggled and asked if his bipap would help him breathe easier...the sweetheart. This whole experience has been so difficult at times, and yet quite normal another moment. But its so heartbreaking. breathing shouldn't be something one has to work for, its a natural reflex, involuntary even, yet why is it that he has to consciously think about doing it...uhg. so my hope i guess for this week is for his comfort. whether thats on or off iv's...i just want him to breathe easy...

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