CF Spouses

[Lilith]

I agree with both sides here. CF spouses...boyfriends/girlfriends, significant others, whatever...have to deal with some pretty heavy stuff if they comit to being with a CFer and granted, they should be recognized, at least. Allie, I agree with you as well that when our battle ends, it's done for us, but not for those we leave behind.

Which brings me to the other point. This post served to honor those who love us, but it also reminded me of all the bad, unfair, nasty crap that I am/will be putting Rick through later in life, and it makes me remember the days when I said I would never want to fall in love because I would never want to do those things to anyone that I loved so deeply. Obviously I put that aside when I found the guy for me, but that doesn't change the facts stated in this thread. CF is nothing but a living Hell...

So I can see both sides of the coin here. Emily, I'm 75% glad you posted this, but I also agree with 'anyonymous' to a point. Even though he/she should have left a name...-_-

 

[andrusjc]

I have not been to this forum in a long while, so I am probably getting in a little late on this one, but I appreciate this thread very much. It is true, everything in my life is all about Martha and her CF from what home we buy to where we go out to eat (smoking & parking issues). I really thought Martha was the only one who knew or cared what it's like to be me, but you got it 100%. I think it is excellent that there are CF people and couples out there that are not as affected by the CF, but Martha can't shovel snow, walk around the block, or vacuum the floor her life really sucks right now! That is our reality and I really appreciate the fact that some people care about us CF spouses and understand what we go through. I would never change my life and I do have hope for a future with Martha. I don't need anyone to stroke my ego and tell me I am great because I sacrifice to be with Martha, but I do feel alone most of the time (no one really understands how I feel) and it's just great to know that other people know what it's like and I am not alone. Thank you very much for this post?Thank you Martha for being there for me as well...Thanks to the other CF spouses that have encouraged me...I hope you all have Happy Holidays...Sorry if I rambled on, this just hits real close to home...

<a target=new class=ftalternatingbarlinklarge href="http://www.cafepress.com/marthaslungfund.40416661">Get A CF Sucks T-Shirt!</a>

 

[summer732]

Emily-
Thanks for posting that! And even though I'm not married I can completely relate to all of the things you say but substituting husband for my family (mother, father, sister). Every time we went on vacation I would watch the three of them struggle with suitcases and bags enough for four since I couldn't help. I'd watch my sister outside shoveling snow with my dad. My Mom worrying about me everytime I left to move into my apartment at school, wondering if I would make it to graduation. So I want to thank you for this tribute to Cfers and their caretakers and for pointing out why our lives are different. This was not a sobfest, It was a beautiful portrayel of reality.

 

[anonymous]

Well, this is the first time I have stumbled across this website for CF spouses, and I was quite moved by Emily's post of the reality for CF spouses. I am a 27 year old without CF married to a 28 (almost 29!) year old with CF. We have been married for 6 1/2 years now and he is truly my soul. The sentences about living without that piece of your soul are so incredibly true & it is like a black hole when I try to actually envision life without him. Some months/weeks seem so wonderful that I can not focus on it, and other days it hits you like a ton of bricks... that you do NOT want to live without him. Through his own words, I know that I have given him reason to fight, and fight hard, in times when he otherwise might have given in to the pain. Is that selfish of me? of course. But having the pain of young death constantly hanging over us tends to make our love more alive, if that makes sense. It's difficult to make future plans, like should we adopt a child? we both want a family, but not at the expense of breaking the heart of an innocent child by losing their father.
Oh, and the sentence about the extra salt shaker is SO true it made me laugh. With Christmas only a few days away, I know my own mother will have out extra salt for her son-in-law!
Regardless of people's opinions on the original post, I think it is a very real need for CF spouses to be able to communicate without criticism and know we are not alone. Although I have wonderful friends and family, you never feel that anyone actually knows the pain you feel alone.
To all those reading this who have lost their soulmate, just know that my heart goes out to you tremendously.
May God bless you all over this holiday season & as my husband says, FCF! (you can substitute whatever f-word you want for the first F!)
Elizabeth
Houston, Texas

 

[lgautier]

This is my first time on this website too.
Emily's post was so true for those of us living with and loving a CF spouse. My husband (32) fights cf everyday and he inspires me to live each day as if it were my last. I guess it does make you feel more alive...I laugh at how selfish my friends are when their spouse does something stupid and I realize how blessed I am to have my perspective. Life is so short, why go through it being misrable? It's all in one's attitude, right.
We went through IVF and after a wonderful pregnancy we had a beautiful baby boy. (No, I'm not a carrier of CF!) Kai is 7 months and has touched our lives like nothing else. As painful as it must be for my husband to think of him without a dad later on, the baby brings an excitement to J that I've never seen before. First of all he looks just like him...very good looking might I add...and his smile is like none you've ever seen. He is what we live for and like any other parents, he comes first. I feel being a father has been great for my husband It gives him one more huge reason to fight. J never thought he would get married or have a family and as many know it is possible to have all those things with CF. We do live one day at a time, and we know the road ahead will be tough, and it is getting tougher for us, but our love for one another keeps us strong.
Not that I don't have my worries, but if it weren't his CF it would be something else! And just like Elizabeth said some days you don't think about it and others it's all you can dwell on. I look forward to this site and knowing that there are others like myself out there.
Happy Holidays and God Bless !

 

[anonymous]

Just stealing a moment on the computer at my parents house, EM, I loved the story. I also read the original about Military families... both of these stories are so true. It doesn't make anyone or anything better or worse, it just IS WHAT IT IS!!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">. My husband sacrifices a lot for my time in the military, and sometimes I sacrifice for his CF.... that's what love and life is really all about!

Lynda, welcome to the site. A personal question here, I run an infertility site on males with CF, I'd love to ask you a few questions off the board if that is ok. If not, I understand but if so, I'd love to hear from you. My email address is division902@hotmail.com I won't have computer access at my home until the first of January (just moved) so it might be a few days before you hear back from me.

Take care all, I'll be back soon and I miss you guys!!

Julie (wife to Mark 25 w/CF)
www.cysticfibrosismaleinfertility.com