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...