My arms are empty and acheing...

I can’t believe I’m a mother without…

Life has been twisted and turned upside down. As a mother, I had both the wonderful privilege of holding my sweet son as I brought him into this world…and the horrible chore of holding him as he took his last breaths and left this world, at only 7 years old. June 24, 2010 he earned his angel wings, passing away after an inspiring but brief fight against Cystic Fibrosis. Now I live, solely focusing on living a life to get to be with him again in heaven, and to raise awareness for Cystic Fibrosis research. I am dedicated to a cure, not only for my sweet sons legacy but so that other CF families never experience the greatest loss of their lives that we are now facing. My mother’s arms are missing Connerman, yet he still inspires me daily to leave a mark of LOVE on this world…so for you my sweet prince, mommy will try!

Love Love Love

Always Always Always

Tuesday, December 15, 2009

Another admit BITES THE DUST!

"You're going home tomorrow!"

Those are words that I never tire from hearing.


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 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.


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 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...

1 comment:

  1. Definitely happy to hear that your boy is getting out of the Hole. I really really really hope he can avoid it for a while :)



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