I've been asked by the OR CFF to be the speaker!!!

Wow!
I am humbled and excited, nervous and thrilled all at the same time. I've been asked to speak at this years annual "Chef's Dinner & Wine Extraordinaire" for the Oregon CF chapter! It is their largest fundraiser. It is blacktie...I am so excited to be even a small part in getting the much needed funding to advance research and therapies to try to stop that dang monster CF from destroying the lives of too many families...I had some much needed quiet time this evening and really wrote out whats on my heart. Our journey. our struggles. our passion. our drive. our goals. our ambitions. i am pleased with the outcome. i believe my speech is complete! although, being the type A that I am (NO! not ME!) I will read and reread it and maybe change things around a bit or what have you. but the nuts and bolts of it is just how I would want it to stay. An amazing opportunity.
I have to say that sweet Conner man is doing so well these days! He's really perked up since making it home from his wish trip to Hawaii!!!! His oxygen needs have lessened, his smile is back, his zest for life is back, and yes even the fighting with his brothers is back too! that is a sound that i used to dread!!! but let me tell you, after weeks of seeing him just slumped over, not even enough energy to talk or fight...i WELCOME the shift! Bring on the fighting! I am just so glad that he can breathe again! I took him to clinic on Monday and they didn't even have us do pft's or check his o2...that was just a relief. Not sure about you, but i HATE numbers. Especially when they're bad numbers. I don't want them floating around in my brain causing me more greif then Im already dealing with. Phew. Conner will now go to CF clinic AT LEAST every 2-3 weeks they want to keep a very close eye on him. Unless he gets sick, in which case we take him straight in to be admitted. We filled out the forms to extend his home tutoring thru the school district. that was a hard decision to make. first and foremost I want my child to be healthy and safe. but at a very VERY close second i want my child to have an AMAZING quality of life. so to make that choice to not risk his health by sending him into germville was a very tough one. but i really feel it was the best decision given his current health status. we will make arrangements for his friends to come to our house, or maybe he can go to school when they have special activities like library day or something...it's all about quality.
today was also a very bittersweet day for me. i got his paperwork turned in to the local DMV office and got his disabled parking placards. the handicapped parking. ugh. thats a tough bullet to bite. who would've thought that would be so difficult. I was fine talking about it before they actually put them in my hand. i wasn't prepared for that today. i thought i was just dropping off paperwork...but she gave them to me right there...and said "oh gosh honey, this little guy is so young. bless his heart. best of luck to you" and that was IT! done! my heart sunk. my eyes stung. reality sank in.
cf...i hate 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...