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.
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Did You Know....
There are over 100,000 people, the size of a small city, on the transplant list in the US.
There were less than 10,000 deceased organ donors in the US last year. (that's a ratio of 1 organ donor to every 10 transplant patients).
In the time it takes you to shower today, 1 new name is added to the US transplant waiting list.
From the time you woke up this morning to the time you wake up tomorrow morning, 18 people will die waiting for their transplant in the US.
click here to join the organ donation registry
BECOME AN ORGAN DONOR, SAVE A LIFE!
There were less than 10,000 deceased organ donors in the US last year. (that's a ratio of 1 organ donor to every 10 transplant patients).
In the time it takes you to shower today, 1 new name is added to the US transplant waiting list.
From the time you woke up this morning to the time you wake up tomorrow morning, 18 people will die waiting for their transplant in the US.
click here to join the organ donation registry
BECOME AN ORGAN DONOR, SAVE A LIFE!
I know, Sarah... I used to think I was a "mild" CFer, then I recently caught a bug and now I'm beginning a one year course of 3 stong abx to see if it's possible to get rid of it. It's such a helpless feeling, knowing that this CF is taking my lung function. Like it must have been helpless watching it take your son. I'm sending out a huge "I Hate You" to CF for both of us.
ReplyDeleteMuch Love <3
Stacey
www.confessionscyster.blogspot.com
:(
ReplyDeletei hate the issues.
i really do.
and i hate all of this all together. i am horrible when people say be positive...because really? really? how? nothing seems to be going right anymore. and its only get worse.
i cant imagine how you feel, so im not going to start talking like i do. but i can imagine at the same time? does that make sense?
i feel like i am loosing her everyday without even loosing her?
who know.
im ranting. ill talk to you soon enough.
love
p.s. our county fair starts on the 11th, all yall are going to that here ;)
I love your blog. . .as hard as it is to read about the pain you're suffering right now, I love that it is so real.
ReplyDeleteYou're absolutely right. CF took my life away from me in a matter of months as well. It fools us by making us think we will beat it, but the game is rigged for us to lose. I think your honesty about your life and your son's fight has touched many and helps people who don't live with CF understand it a little better.
Thank You for sharing your life with us.
You brought something to light for me: I never put together that those with "mild cf" can still catch the same bugs and die - for so long I said I had "mild" cf but then it got "severe" but really it's still mild, I just have severe infection that has reduced my lung function. I'm anxious about Beth and Skye, too. I hate not being near them and their families. I feel helpless to do anything but pray.
ReplyDeletetears, thats all that comes to me when I read your post. I don't even know you or your children, but I feel for you and would like to help with the cause.
ReplyDeleteI hate that you had to go through that. I hate thinking about any parent that has to do that. I wish that 'easy' button was real.
ReplyDelete