Conner man decided today that he's ready for a break from his IV leash...such a big decision for such a young person...although he's wise beyond his years naturally from all of this. This decision scares the bejesus out of me. I asked him gently if he realized that the IV's help him feel good and that w/o them he may feel bad again quickly and he said "ya i know mom..."
so there you have it.
I talked to hospice today, have to schedule an appt....and tomorrow i'm calling our local funeral director here that has come highly recommended and see what he thinks if theres anything we need to do before hand....
this.
sucks.
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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!
My stomach just dropped :( I can't believe you even have to udder those words. "funeral home". Both should be banned from a persons vocabulary.
ReplyDeleteI pray that Conner's break goes well; and that you don't have to take on anymore then you can possibly handle right now.
Your family deserves Memorial weekend to yourselves...not to be shared with CF.
You guys will all be in my thoughts..as always.
Lots of love, strength, and prayers
Chelsea
Continuing to pray for you all...wish there was more that I could do.
ReplyDeleteYou have given Conner his dignity through your respect of HIS decision. Keep listening to your son, Sarah. You can do it, I know you can. I know you can...
ReplyDeletexo
k
My sister was a bit older (14) when she decided to do the same thing. People judged my parents pretty hashly for allowing her to do so, but she was SO HAPPY to be able to move freely! I think you have done a wonderful thing, giving him that choice- as difficult as it may be for you.
ReplyDeleteI found you through CF Mama...I am a sibling of a CFer...we lost my brother in 2000. I have continued to fight for a cure for this disease and keep his name and legacy alive. Every CFer I have meet or found online is unique, it's weird they are ALL 'wise beyond their years' as you said - very wise!!! Your little guy sounds awesome and I'm so sad to have found your blog and him in so much pain and discomfort. I pray that he has a turn for the better...he is brave and you are brave!!!
ReplyDeleteMandy
{www.jeffsentourage.blogspot.com}
Dear Sarah, no words cant find any just tears my heart is breaking for you your husband and your boys. xx
ReplyDeleteI know you don't know me, but I've read through your blog. A friend invited me to the "Red for Conner" FB page a few weeks ago. It just breaks my heart that y'all are having to go through this. I don't have any experience with CF and the closest relative I've ever lost was my grandfather to lung cancer a few years back. That was hard, but I can't even imagine what you're going through. I just wanted to let you know that you are in my thoughts and prayers.
ReplyDeleteHe sounds like an incredible little boy. I wish I could meet him. Stay Strong, He is strong too.
ReplyDelete