Silence

My husband and two of our friends just left taking the two boys with them to the county fair. doesn't that sound southern of me. hee hee hee...no offense...anyway. I bet they're going to have a blast!
it is very quiet.
it's me and my dog, grover.
today was a hard day. i've been overwhelmed with some news i heard from a dear cf'er this morning...my heart literally broke. and then to find out about CG's hard night, filled with a code and yet another surgery after having her double lung transplant just days ago, and another little warrior continueing to have issue after issue after ISSUE from cf...gggrrrrr
so today is just very difficult.
it made me very emotional, not just about them but about Conner and the reality that he's gone now. for good.
and life as we know it is hanging in the balance for CF, for Skye, for every single person with CF. I don't believe there's a "mild" cf...because those with "mild"cf can still catch the same CF bugs and they too can get lung infections and they to can die from this monster. I feel like each and everysingle one of us is joined together and holding onto life with just a tiny little sewing machine thread. that frail, that fragile. one quick swoop and it can break, it can be over in the blink of an eye.
I've seen it. I hate that I have, but I have.
I've seen with my own two eyes how fast CF attacks when it's ready to. I've seen my child go from no oxygen, to nighttime only oxygen to 24/7 oxygen in a matter of a few months. I've seen him go from eating to not eating in one day. I've seen him go from being able to run and keep up, to run and be behind..to not be able to run...to not be able to walk in only 3 months time. I've seen a talking, eating, laughing beautiful bright child one day, turn into a shrivel of a human being slipping in and out of a coma and barely breathing the very next day.
i've seen my own son die.
i was there.
my husband and i were holding his hands begging him to just let go.
let go.
breathe.
let go.
we love you.
honey...it's ok, just go.
we love you so much...
it's never goodbye sweet prince.
i love love love you, always always always...

BEGGING him to die. because of what cf turned his life into. our lives. there wasn't a part of it, cf hadn't touched.
can you imagine that...begging your child to die...
uhhhg...
Cf is horrible...it's swift and precise, steals one smile after the next, fills your day with heartache, and gosh we need that cure...we need to stop this beast. no parent should ever have to beg their child to die...
i wish i never had to.

CF clinic was this morning, and we were not admitted. Conner's still sick and so doc put him back on IV's again. i guess at least he got a few days off right? So the rn will be over tomorrow to reacccess his port and get the iv's going, and he's also doing an extra oral antibiotic three times a day and i believe they FINALLY called in a prescription for the Cayston therapy. What a hassle that has been. Guess I'll believe it when it shows up at my door.
Today's one of those wierd days. Had a lot of CF family friends at clinic today and it seemed like everyone I saw had an off day. Full moon maybe? It's very hard to stay positive all the time, and I'm trying my hardest to, but it's a constant fight when you feel so helpless.
But it's a beautiful day/evening and I'll doodle around a bit and get to bed early and maybe it'll help me to be refreshed and ready for tomorrow. Because as we all know tomorrows a new day, and the next opportunity for a miracle...
and Lord if your listening...I'm still waiting on ours...

PFT's are for the "special Cystics" apparently...

So another day, another CF clinic appointment. We're on the 3 week schedule. I'd be lyeing if I said that it didn't bother me, but you know what, we're getting by...day by day we're walking thru it all. No more pft's for my sweet angel. He's too out of breath. His lungs are too sick. Kind of pointless now. I think his last pft had an FEV1 of 33% or so. So no need for lower numbers. Wish they were higher. I cringe when I see people complain about their "low" pft's and it's like an FEV1 of 90%...oh how I wish we had that number. I bet Conner had that number when he was like 2 years old. I spent alot of time the other day, pulling out old pictures of him, of all the boys, of my husband and me..just reliving family memories. And my breath was taken away from me when I saw old pictures of Conner. To me he's always been so skinny with all his digestive issues from CF...but I saw all these pictures of him from about 18 months when we got the disease on track and weight gain was quick thru about age 4...chunky cheeks, full, round face...regular colored skin...I never realized how far he's come in these past 2 years. How bad it's really gotten. I've got all his numbers down to a T in my brain but I never caught how far gone he was looking at him physically. I'm sure it's because it's been so gradual and over time, and I see him each day that I didn't notice. but it is just night and day. Unbelievable. A friend that I know whose known Conner from back when he was 4 and had those glorious round cheeks came over the other day after not seeing us in a few years and said to me "WOW Sarah...he looks so much sicker than he used to" (and it's ok for her to say that...no heads were bitten off...) I kinda laughed it off...but then I looked back to all the pictures and she's right. wow. how did we get so far gone? Which springs up a TON of mommy guilt...which I know is ridiculous but that doesn't stop it from coming into my head and torturing me....what could I have done better, differently, remember that day when we missed a treatment...what have I done? on and on and on. Ridiculous I know. But there, nevertheless. Look at how he's changed...this is him 18 months...
Beautiful full chunky cheeks and it wasnt really baby fat because before this he was a very bad case of failure to thrive. So this is him with his feeding tube getting him to where he should be...before all the wonderful PA and MRSA colonizations in his lungs... and the years have not been kind to Conner...this is how he looks today...4 years later
Maybe it's not noticable right away...it took me a few minutes to really see it all. And this really isnt' a good picture to make an example out of, because I've already did some editing adding more color to his face...so take a peek....what do you see? I'll tell you what I see. I see a very skinny face. I see very tired eyes with huge black rings under them from his lack of adequate rest and his sheer exhaustion from just breathing, I see a "V" in the bottom of his throat, his airway....you Cf'ers probably know what I'm talking about for the rest of you, that area at the bottom of your throat, but just above your collar bones in you and I isn't really prominant. It's there...but it's not really noticable. His is. Because when he breaths, he's gasping which makes that little "V" area sink in deeply with each breath signaling the need for additional oxygen supplementation...looking even more at him (but you can't see in this picture) I see just how skinny he really is. If you put your thumb and your pointer finger together to make a zero, it's pretty dang small isnt' it? Guess what, his arms are so skinny you can put your fingers like that all the way around his arms, upper and lower, and if you make it just a tad bigger, his upper thigh will fit in there too! I see his ribs from his back, right thru his skin. Like seeing a walking skeleton. He's had a feeding tube ever since diagnosis at one year old and it used to help us greatly, but now he's on a very high calorie formula that he gets 4 cans of a day (375 cals each), with 45mls of Microlipids (straight fat) with each can, and 4 Boost Plus formulas to drink each day and we STRUGGLE to keep his weight stable. He barely eats anything anymore, its a good day if he eats one thing...honestly. his body can not eat and breathe simultaneously. You think about the energy it takes you and I to breathe...it's not even noticable right....well for him, his body is working so hard just to breathe that it burns thru a ton of calories just to live. thats not even to walk or to run or anything. thats just to sit down and breathe. That is so scary. How could I not have noticed? I've been so wrapped up in the trenches of CF, making the appointments, dispensing all 15 meds 4 times a day, cleaning the nebs between each treatment, administering the bolus feeds, helping him drag his oxygen around, carrying him because he's too tired to walk, helping him in the bathroom because he's having diarrhea, going to the pharmacy to pick up all these wonderful oral antibiotics he's grown so accustomed to, talking on the phone ordering more IV supplies or formula, driving to appointments, fighting with the insurance, arranging his home tutoring, keeping at his side while he's struggeling in the hospital, cathetering him when the IV meds cause his bladder to stop working, hooking up his VEST therapy, or doing hand pounds on his back, or helping encourage him to do PEP, mixing his two inhaled meds that don't come prepared...handeling needles and glass tubes etc, and trying to just let him be a kid. and trying to raise two other children. and to find that same amount of time and attention to give to my other two kids. and to my husband. and to me. quiet time? nah... I can see just how much CF has changed me, as a person, as a wife, a mom, forever. Sometimes I think for the better. Other times I'm not too sure.
I just can't believe how far he's gone. How quickly it all has happened. I thought people with CF were supposed to live longer lives now...with all this wonderful therapies and new drugs and advancements....I was hanging on to maybe the median age of 37....and even that seemed way too young. Hell I'm not even 30 yet and I don't feel like I'm halfway done living my life...theres simply too much to do. Then I think about how much he has taught me these past 7 years. How he's blessed me. How I'm so lucky to be his mom. How I wouldn't trade all those treatments and hours each day dedicated to destroying CF for one second. How many lives he has impacted and changed in his short little fragile life. It is too hard to even fathom life without him in it. I just can't picture it. I'd be bored to tears! Raising two healthy kids would be like doing nothing. only annual well child check ups and the occasional sick visit. No more need to drive an hour to CF clinic. No more hospitilizations for weeks on end. No more home health company. No more feeding tubes and formula, and nebs, no more vest or pep...but more than that....no more grade school until my middle son gets to kindergarten...a huge part of me would be just done. isn't that crazy to even consider? what in the world would i do?
I'm fighting this fight as hard as I can, and while theres not much noticable that I'm doing, if you spent a full 24 hours with us at our house you would see our daily battle, just to make it thru one day getting to be at home w/o being in the hospital. You would see how Conner just does all these treatments most of the time with a smile on his face and no complaints. You will see how his younger brothers run around and play and Conner sits on the couch and watches and laughs because he doesn't have the energy to join them. But sometimes he does. I love when he does. He'll run around the living room and into the kitchen, laughing and screaming with his brothers at the top of his lungs, and his brothers at the top of their lungs til I'm sure someone is going to call CPS because they think somethings horribly wrong at our house....now the old sarah would've put a stop to that like 10 minutes ago...but now...i sit back and watch and smile, or most often I join them and run around and scream with them...then i get Conner his oxygen and sit with him when he needs to take a break to catch his breath. ooh how I love the sound of screaming, healthy lunged children....what a perfectly "boring" and "easy" blessing it is. Not all time consuming...yet no will to fight harder...no waiting on a foundation to find a cure...yet still fighting the fight all my life....
oh who even knows where I was going with this blog...I think I was just going to write about Conner mans CF appt today and look where we've ended up...talking about the ugly reality we're drowning in each and every day...not at ALL for pity...because I'm proud to be in this fight. But oooohhhh how I wish it didn't exist.
how i wish nobody had to suffer thru it.
how i wish beyond wish that it wasn't my son...

Open and Honest

Lets be honest here for a minute in time. I hear Cf'ers and family members all the time say that they don't let CF get to them, or control them, or affect them. But I'm sorry, is that really true or just something you say? It gets to me. I have my moments where CF gets to me. Those moments like today when I had to park in the handicapped parking for the first time because my 6 yr old son with can't make it long distances. Ya, that got to me. Then we get in the store and he immidiatly asks to sit in the cart! He can't walk around much. You bet that got to me! Today my middle child threw another all out tantrum at this store out of nowhere, his entire personality has changed since his brothers been in the hospital so much these last few months. Uh huh... that got to me too! I read on a fellow CF'ers facebook today that one of their friends with CF passed away today. My son has been using his oxygen more in the last two days again, so then my brain goes into overdrive. Damn it, people it GETS to me. How can it not get to you?! No way do I let it control my life, but I feel I give it the respect it deserves as a horrific opponent. I give myself the ok to have my times of mourning, then I wipe the tears from my eyes and put on my all too famous "strong mommy" face and dive into another day of it.
Today I paid very close attention to Conner's treatments and how long they take, and how long cleaning it all and preparing it all takes, the bolus feeds too...it is ridiculous! My child did 24 different treatments today, some nebs, inhalers, antibiotics, enzymes, etc etc...He also did PEP 4 times today, he did 2 bolus feeds today....i cleaned all the am nebs with the boiling water got it laid out to try and you blink and it's lunch time...so it's bolus time, it's enzymes, it's albuterol. it's hypertonic saline time. don't forget PEP. then he has a school teacher come to spend an hour with him. Then it's dinner time. it's enzymes it's bolus. Then bedtime meds...flovent, inhaled gent, hypertonic saline, flovent, cipro, zyvox and more enzymes for his night feed. Look I'm just being honest here. His entire day is about cf. his body is so worn out that he sleeps in, so we squeeze all of this in, in the 10 hours he's awake. How can it not get to me? He never complains, but it's not ok that he's sitting on the couch doing yet another treatment and watching his younger brothers running around playing. His free time is almost non existant it seems. There is always something. You clean up little bit of cf...then it's time for the next meds....
And since we're being so open here let me tell you why else I'm upset about. That damn Vertex clinical trial announcement yesterday by the CF Foundation. in a nutshell..."we're excited to announce a successful phase 2 clinical trial of this vertex compound, (that literally goes in and fixes the underlying cause of cf) We will be looking to move ahead to the next phase for patients to test out in the later part of 2010" . This stuff is amazing. it's specifc to Conners CF mutation (DF508)...which means his body makes the proteins its supposed to in the CFTR but can't release it as it needs to, to make it work properly. This magic new compound (a pill i believe) goes in to the CFTR, gets that protein out and where it's supposed to. When people did this clinical trial it corrected their sodium chloride so that when they were sweat tested for CF, they were NO LONGER POSITIVE!!!!!!!!! Look it's not a cure. It's something HUGE to be able to use until the cure is found. it's going to save thousands of lives. keep thousands of families together. but woot woot...guess who doesn't qualify.
yep you guessed it. I'm upset today to see this wonderful new miracle drug, probably our only chance to keep our son alive is going to be in patient trials but his lungs are too sick to qualify. WTF??!!! Let me tell you something, you wanna see if something REALLY works? Give it to someone seriously sick from CF. I bet the results would show thru faster. and guess what?! you probably just saved a life from being lost. I'm just so upset...to know we're so close to that miracle (prob wont be fda approved for about 2 years or more) and that it's probably going to be too late for us. so please excuse ME if CF gets to me. I'm not afraid to admit it. It does.
My husband and I have our couples counseling this next week and we're going to be making a plan to talk about Conners poor health and dyeing to the kids. We simply don't know where to start. Probably can't even choke the words out. But our kids are scared. They know whats going on, but don't understand it. It gets me. Big time. I can't go thru one day, hell one hour without thinking about something related to Conner dyeing. ONE HOUR! I tell you people this disease ENRAGES ME! It fuels me to fight harder. It's what gets me out of bed in the am and line up all the meds and start preparing them, administering them then cleaning it up..it fuels me to raise even more money this year then I have ever for CF...because my life will be dedicated to killing this disease! Whether or not my Conner will be alive to get to that miracle cure I don't know. But I know I will be. It's gonna happen in our lifetime. It's going to save thousands of lives. I will simply not rest until all the CF docs are out of jobs....
because we no longer need them...

It's that time of the year again, January is almost to a close and my mind has shifted gears to my favorite season.....Great Strides walk for Cystic Fibrosis season!!! Our walks take place across the nation in the month of May (and a few in early June). Over the 5 years that we've participated in this walk, we've raised well over $10,000 for CF research and drug developement, but this year I have bigger ambitions.
This year my goal for our walk team is to raise AT LEAST $4000 for CF research, and also to have Conner Jones Teams branch out across this nation! Already we have teams started in WA, CA and NY!!! Each individual team will have their individual and team goals. We are reaching for the stars this year!
Please consider donating to our local walk, which is in Vancouver, WA May 8th this year. Please also consider joining our walk team here locally, and if you're far away please consider starting a Conner Jones team where YOU LIVE! It is so easy to do! I am here to help all of you along the way!
Lets make this the BEST year for Conner Jones Team EVER!

to join my local team and/or to donate click this link
http://www.cff.org/Great_Strides/dsp_DonationPage.cfm?walkid=6584&idUser=134723

to start a Conner Jones team and recruit team members where YOU LIVE click here
www.cff.org/greatstrides
(and search for the walk nearest you and register a new team and name it Conner Jones team)

Lots of love and support!
Please pass this along to everyone on your contact list and lets make this a very great fundraising year!!!

Love
Sarah Jones
Conners momma

Extra prayers for Conner

Conner is getting so excited for next Monday....thru Saturday actually! It is his Make a Wish trip to the Big Island of Hawaii for 6 wonderful days where he will get to ride on a helicopter to tour the island so he can see real lava and volcano's and to go on a whale watching trip since he loves whales. We are getting excited with anticipation as well. Conner's make a wish send off dinner is this Tuesday evening at his favorite restaurant, Izzy's (HA!) where his wish fairies give him his plane tickets, spending money, and itenerary. This is his most heartfelt wish and I'm forever thankful that Make A Wish was there to help us get Conner his wish a reality...

However...he's been on home IV's a week now, we planned to start them to make sure he's in the best health possible before we left on his trip, but he wound up needing them anyway, so it was kinda perfect that he started them when he did. But over the weekend he has gotten worse. Thick, nasty cough that we've grown so accustomed to has come back to test us. His oxygen has plummeted to around 86-89% so he's been requiring oxygen most of the day now as well as when he sleeps. He even spiked a fever on Friday night. This same thing happened just a few weeks ago and it put us back in the hospital just before Christmas. The timing couldn't be worse since his hawaii trip is in 7 days...
I will be calling CF clinic tomorrow, maybe take him in to see them or see about also getting a home oral antibiotic to help him fight this new infection so we can make it on our big trip. Of course make a wish always told us the wish can be rescheduled, but I don't know how far in advance it'd have to be changed, and also...I don't want CF to win. Seriously, it is taking my son's health, our families peace, our son's childhood, and now it wants to take Conners biggest wish away too!!! unreal!!!
Please keep him close in prayer, that he can beat this infection and make it on his big trip.

What I learned in 2009...

I'm no good at resolutions, nobody I know is really...so instead of doing that I will write what I've learned this past year....and what a year it has been.
I've learned that this year has been the WORST year of my life thus far. I've learned that things truly are easier said than done. I've learned who my real friends are, and weeded out who are not. I've learned that when you feel out of control and angry, that if you put on just a little bit of makeup or pretty earrings that it makes you feel a tiny bit better (try it!). This year I learned that I really am my sons' greatest advocate. I've learned the power of random acts of kindness. This year I've learned how much I am blessed to have 3 beautiful sons and a loving husband. This year I learned what a bipap machine is. This year i've learned who is there to support me. I've learned it's truly better to give then to receive. I've learned, truly learned, that God is there for me and my family. I've learned just how much pain I would be willing to endure for the sake of my children. This year I learned that kids can "outgrow" their PORTS and have to get it replaced. This year I learned, or finally truly understood just how lethal CF can be when it attacks full force. This year I met my best friends. This year i've learned how hard it is to watch my son struggle to breathe. This year I learned how to read and understand chest xrays. I've learned more about CF this year by my almost daily research than in any year before. This year I've learned just how easy it is to let your fear take over your entire life. I've learned that you can manage to fit in 10 hospitlizations and 10 rounds of home IVs into one calander year. I've learned how great it feels to give 100% of yourself to others, whether it's by buying the stranger behind you in the drivethru their coffee, or by giving even a dollar to a homeless man. I've learned just how amazing it is to have quiet time. This year I've learned how important it is to cry. and scream. and laugh. This year i've allowed myself full honesty when dealing with family or friends. This year I've learned how important it is to me to not make Conner live in a bubble. EVER. This year i've learned to put my family before extended family. I learned not to look differently at people who go out in public in sweats or pj's, it may just be the only way they can make it thru that day emotionally. This year i learned it really takes a village to raise a child. This year I've learned just how hard being a mom to a special needs child is. This year I've learned how to let things go. I've learned to say no and mean it. This year I learned there are books at the bookstore to read to your kids to teach them about a sibling dyeing. I learned I love the chaos of Christmas traveling even though I swore I hated it. I learned that sometimes silence can be deadly. I learned the importance of surrounding yourself with positive people. This year I learned that going to a midnight showing of a movie is actually not as crazy as I had originally thought. This year I learned how music can drastically influence your moood and behavior. This year I learned alot about our CF docs (one LOVES to roast his thanksgiving turkey in an oven bag! another plays guitar in a band and can't figure out how to play boulevard of broken dreams by green day!) I learned this year that having oxygen and a pulse oximeter in my home will cause me to overpanic. I've learned how to calm down my OCD. This year I've learned that if a doc wants a sit down talk with you it's generally not going to be a good discussion. have backup. I learned not to judge others because you never really know exactly what they're dealing with. I learned this year that I guess Tequila and I can be friends again in the form of a frozen margarita....This year I've learned just how much i despise people who CHOOSE to smoke and kill their perfectly healthy, beautiful lungs when there are thousands who did not chose to have horrible lung disease from CF. This year I learned that you can get a tutor to come to your house for your 1st grader, and that he would still make it to 2nd grade. This year I learned the dangers of CF and hottubs, but refused to limit them from my son because he loves them. This year I learned about the Twilight series. and fell in love with it. This year I learned who my greatest enemy was and learned to accept that it is a very strong opponent. Ive learned that you can't put your faith 100% in your Dr's, that nobody truly knows everything. I've learned that spending quality time with your family is the most important thing you can do. I've learned that the dishes and cleaning will wait for you. This year I've learned how to see thru people's smiles. I've learned that I am on Team Edward. This year I learned that when people say they are ok, they really aren't. This year I learned that clinical trials will not accept my son because his lungs are too sick, even though he could benefit the most from those therapies. This year I've learned that a child can decide to no longer eat because it's too hard to eat and breathe at the same time. This year I learned all there is to know about MRSA. I've learned that sometimes Doctors guess! They get stumped. They don't know...This year I've learned that you get to a point where you have to take your health into your own hands when dr's say there's nothing more for they can do. This year I learned how to not let someone telling me NO stop me. This year I learned how much my heart can break by the smallest of children. This year I learned you can get an Xbox 360 and a Wii in the same month. This year I learned how to keep families connected with us by caringbridge. This year Ive learned how lucky we used to be to only have to go to CF clinic once every 3 months. I've learned that I cannot, and will not take on anyone elses stress for my own, because I've learned I have enough already thank you very much. I learned that I really do love to run, even though i spent years saying I hated to. I've learned to accept help when it is offered. I learned homemade chicken noodle soup really is good for the soul. and a cold. This year I learned how to let Conner Make A Wish. This year I've learned that watching my son's health deteriorate in front of my eyes is truly the hardest thing I could ever imagine watching. I've learned to never say never.This year I've finally learned that sometimes a cure doesn't come soon enough. Sometimes prayers aren't enough to heal. I've learned that sometimes people aren't meant to be healed, it's not their plan. I've learned that sometimes you will outlive your children. it does happen. yes, it really does happen. I've learned that the previous lesson takes a LONG time to truly sink in and become real. I've learned that sometimes it is perfectly healthy to be numb to your circumstances. This year I've learned that at the first sign of a lung infection, i start to worry. I've learned I suffer from anxiety and panic attacks. I've learned to always have a bag packed when I head to CF clinic. I've learned to make small, realistic, and acheivable goals for Conner's health, so I don't always feel so helpless. This year I've learned that anytime not spent loving someone is just time very much wasted. I've learned how silly kids look when they lose their teeth and only one or two big teeth come in those gaps. This year I've learned that when you go to Starbucks too often, they memorize your drink down to the temperature. I've learned I've never been so excited for a year to be done with. Yet, I've learned that next year may not be sunshine and roses as well. This year I learned that my son's health is too poor, and he is too fragile to qualify for a lung transplant. I then in turn learned that I would lay down and give him my lungs this second if I could. I've learned there are no guarentees. There is not always a tomorrow. I've learned to be present in each second of every day. I've learned that the smallest moments make the most precious of all memories. I've learned that sometimes medicine just isn't enough. This year I've learned that my children know who God is and they believe in Jesus. I've learned that if we start eating dinner and forget to say "blessings" my son Hunter will always remind us. I've learned that life really can be as carefree as it is for a child. you just have to make that choice. I've learned that thru all I've learned and how much our lives have changed this past year that I'd still rather be fighting the good fight, for my son's life, then to have already lost that fight. and I've learned that all i can do is fight, so all I will ever do is fight.
God bless you and Happy New year to you!

Another admit BITES THE DUST!

"You're going home tomorrow!"

Those are words that I never tire from hearing.

Finally..............

This is Conner's 9th or 10th admit this year ALONE. The MRSA that has taken residence in his lungs have led to this horrific year...that thankfully...is ALMOST OVER! You know I have never really cared what year we're in, or about New years...never made a difference to me one ioda! but this year...THANK GOD IT'S ALMOST OVER!!! I've gone back thru Conner's mychart account here at the hospital and he has spent OVER 200 days of his life here in the childrens hospital. he has in turn spent another exactly 202 days at home doing home iv's...and has spent another 159 days doing home oral antibiotics all to fight this horrible disease! For those who are math savvy that is almost 2 years of his life....and he is only 6!!!!

But let me put it into perspective.

HE FIGHTS EVERYDAY OF HIS LIFE!

To do the things we take for granted... he fights to breathe, he fights to have enough oxygen to breathe AND eat at the same time, he fights to have the energy and strength to walk thru a grocery store w/o getting winded, he fights to keep his supplemental oxygen needs to only night time and not daytime as well, he fights to digest his food, he fights to gain even half a pound, he fights with the constant desire to be "normal" with his friends and not be tied down to his over 15 daily therapies, he fights he fights he FIGHTS...

And as a mom, i watch him fight.

i ache.

i suffer.

i feel soo overwhelmingly helpless.

It is by the grace of God that I can put a brave smile on my face each day.

That when people ask me how Conner or I are doing, that I can somehow say "ok." Because we are FAR from ok...

It kills me to see him out of breath, gasping...I've seen the inside of his lungs, he is fighting for each breath he gulps in. I bravely hold his hand when they put that push pin sized needle in to access his port for Iv's as they have since he was only 3. 3 people! Most people with CF dont need ports until their teen years or beyond...he is 6 and is on his 2nd port because his veins are SHOT from all the PICC's and Iv's they've had in them from birth. Hell he was stuck with needles when he was in my belly. You wanna talk about perspective...my son truly believes he is LUCKY to have a port. That kid is amazing beyond his years. AMAZING.

So we are getting discharged tomorrow probably early afternoon after his 2 iv's at noon. He will be on iv's until next monday or so. Christmas week. already. The week where we were planning on doing preventative iv's for his upcoming make a wish in early january. heartbreaking that these iv's in fact are not preventative in any extent of the word. they are to help fight the mrsa that is taking over his lungs. So he will be done with his almost 2 months of iv's on monday. he will get exactly 7 days off from iv's, then will restart them the monday after Christmas for Hawaii. We are looking at possibly doing oral antibiotics while he's in hawaii to make sure that he stays well so far from home.

Each night I pray for a cure, i spend hours of my day praying for a cure, or crying on the inside, putting my brave mommy face on for my son...he is much stronger than I am, there is no doubt about that. He is a CF Warrior...he takes this battle head on with a strength I will never know or fully understand. I cry when I have to get blood drawn...BOO FREAKING HOO...seriously! He inspires me to be stronger, to be better, to live in each moment, to be more patient and more understanding, to fight alongside him for a CURE. He so deserves it. All those with CF and their families deserve it. In the grand scheme of things in my life...truly...nothing else matters, not what year it is, not one little thing.

only a cure...