**Warning...today is a HIGHLY emotional day for me so please note that I in no way am trying to hurt anyones feelings and also note that i HATE cursing..but today...well shits hit the fan**
Todays mail.
Inside was the usual stack of bills that I have been waiting for, a few cards for C-man (he gets quite a bit each month THANK YOU!), and the National census report. No biggy. I grab it all, take it inside and pay my bills online and grab that large white envelope that is oh so official looking. It really got me thinking. Census' are only taken once every decade I believe, I'm guessing because I've never had to fill one out before and I'm almost 30...and it's quite an easy form to fill out. Fill out names, check off a couple yes/no's and stick it back in the mail. There. Done. Your family's all accounted for.
except...
The horrible truth flashed before my eyes, this will more than likely be the ONLY census that my sweet Conner will be alive and accounted for. and thus my day's turned into shit. He also woke me up this morning by his breathing which was labored and fast and he told me that he felt hot. I take his temp and it's 103.5 so of course the only thing on my mind is how fragile he is. I call the cf docs and plead with them to not admit us, that we have o2 and sat monitors etc at home and IV's etc and I beg for them to give me until Friday unless things change for the worse before then to see if he can kick this viral crap or not before going back in. We discuss Cayston therapy. He agrees it'd be an additive therapy for Conner. The Rn also warns me that the oncall doc might not be comfortable with my wish to keep Conner home because he is so fragile. I hate hearing that. Look I know in my mind all of these health concerns but when i HEAR them from the doc or the RN it infuriates me to no end.
i foremost want to do whats best for my child. for his health. i tell the RN that what in the world is different from doing the treatment at our home vs a hospital and he agrees the therapy wouldn't be any different but that the doc wants to keep a very close eye on my son. it's all quality of life for me. i just wish for a moment that we could catch a break. that conner could catch a tiny break. just a small one. how much would it be to ask for simply one month w/o being admitted into the hospital. it's a slap in the face. he should be on a transplant list, but he's not a candidate and in that respect i feel it'd do more harm then good for him. so i just don't know what to feel anymore. i fight and i fight and i fight. but i'm getting nowhere.
nowhere.
the rn of course re-iterated that our only option is antibiotics. i told him why in the world could that help if it's viral. he said that the antibiotics will help his lungs from being overly attacked with the bacteria inflaming them from whatever this viral thing is. and that if we do nothing, meaning no antibiotics, the bacteria in his lungs WILL overtake him, leaving us with nothing left to do but say goodbye.
i often feel that i'm such a pessamist. i follow Ronnies, Pipers, CG's and all sorts of other uplifting, truthful but positive blogs about CF....then I read my own. I feel just so horrible that i can never manage to write ONE positive thing on my blog. not one. but i'm just not there. conners not there. we haven't been there in years. but still to me it's devestating. i feel i sound like i've already given up. but i haven't. and i won't. but our happy days are so few and far between anymore that i just feel i'm a constant downer.
and in that respect i've given up.
i've given up my happiness to this monster.
friends wanna talk about it, or get my mind off things but it just isn't enough. it only is temporary. i'm so sick of this shit that i wish i could just fall asleep and sleep for two weeks i'm so exhasted from it all. i don't know how i get out of bed each morning. i know WHY i do, but i don't know HOW. i wish i could feel more positive and hopeful. but i don't. i can't force myself to either. and i hate it.
because i'm not a negative person.
cf's destroying every aspect of our world it seems. and as hard as we fight to not let it, it seems to always win. always.
i'm sorry it's all so negative. i laugh when people tell me they find strength or inspiration in my words because i don't see how they can. because i don't really. i feel like the biggest pessamist i know. and THAT is not who i am.
so i'll just stick that lovely us census in the mail tomorrow damn well knowing that the next one i fill out will be the proof that cf has yet again won, and try not to cry. or to dwell on it. but today is just too much for me to bear.
just too much.
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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!
You're an inspiration to me because you're real. That's all I can say.
ReplyDeleteI hope your right a book someday, because there are more people who cope with your way of grief than you think.
I really look up to you.
I want to write a comment but what can I say? The only words that come to my fingertips are: I'm so sorry. I appreciate your real feelings, as unhappy as they may be.
ReplyDeletehttp://bennettgamel.blogspot.com
I read your blog and I just want to reach through the computer and hug you....I've been "stalking" your blog for a while now, and have just recently become a "follower". I cant imagine your pain and frustration and I hope that if/when ever am in the situation you are in now that I have the courage to be as real as you are. best wishes and *hugs* to you and connor and the rest of your family, we are out here cheering you on! ~Juli
ReplyDeletewww.lifeloveand65roses.blogspot.com
I'm at just as much of a loss as everyone else, for what to say here. My heart breaks for your family & it breaks even more for you. As everyone else has said, you're an inspiration because you're real. I know HUNDREDS of CF mom's and there's quite a few that wouldn't dream of saying what you've said, simply because of the image they think they need to uphold.
ReplyDeleteAnyway, I just wished I lived closer so I could give you such a huge hug. I know there's nothing that will take your pain away, and nothing that will make this any better. I want to say I'm sorry, but it won't do any good. Everyone's sorry. I am glad though, that you have a place to vent all this, and I'm even more glad that you have an online family who can help support what you're going though...even if we don't know first hand.
Please hang in there, and please don't quit fighting. Your "how" is because of your love for your family; your desire to end all this crap for your son; and your will, to make sure that his life is led as normally as possible. That's HOW you get yourself out of bed. Don't loose that focus.
I hope some of what I said helps. I come from a long line of parents who've lost babies. It's one foot in front of the other all day, and it's all you can do to keep surviving when dealing with something like this. God put Conner on this Earth for a reason, and God & Conner picked you as his mother for an even bigger one.
Please stay strong.
Love,
Chelsea
I also wanted to mention yay Cayston! I know you've been wanting that for a while for him. Maybe this will be the turn around he needs. Lord I pray.
ReplyDeleteOkay, I have to say it: Sarah, you're a beautiful person with a beautiful heart that shines through every single post you write. When I read your blog there is only one word that springs to mind, and it's not "negative." The word is "love" -- love because I can FEEL your love for your son in your words and your grief, your love of life in your fight and your courage, and your love of God in your faith and your strength. And to me, that makes this one of the most positive blogs I could ever imagine, because what could be more positive than pure, unconditional love?
ReplyDeleteSending you lots of it right now, friend. And many healing vibes for your precious C-man!!
You aren't negative Sarah. You are real. And you are positive...Your own words:
ReplyDelete"I want to do whats best for my child....it's all (about) quality of life....I sound like i've already given up. but I haven't. and I won't."
That sounds like a positive person who lives in constant worry because she wants her child to live. That is justified. This blog is an outlet for you to send all that worry and frustration out as you need to because if you didn't, you'd explode. We all know that.
Do the best you can every day with what you've got. That is all we can do in life. Give a big hug to C-Dawg for me. Sending all my energy to you!
Your strength is an inspiration... Hang in there.
ReplyDeleteTara