Monday, January 25, 2010

Early Thoughts on Marrying a CFer

I was contacted earlier this week by a girl that is dating a CFer. She asked how I deal with everything that comes along with dating someone with CF, namely, the possibility of sickness and death. It was a good opportunity for me to put into words what I've thought for so long regarding that issue. Ronnie and I talked very early on about those possibilities and I had a very set way I required myself to think about it all before I would marry Ronnie. Here is my exact response:


"Let me tell you, first and foremost, I am still learning how to navigate all of this myself. Ronnie and I have been together for a little over 1.5 years, so I am relatively new to the game. But it is something I am getting comfortable with.

Here are my thoughts on all of it. Initially, it was scary. Ronnie and I talked very early on about the possibilities. We talked about the uncertainty that comes with CF, and not only death, but the hospital bouts, the good and bad days, etc. I learned early on that CF was something he felt was a blessing in his life and I would need to adopt the same perspective if this was ever going to work. I then began to think about life as a widow. As in, if Ronnie were to die in the early part of our marriage, how would that be for me. How would life look? How would I choose to move on? Would I be able to pick myself up? Would I be happy? These were all important questions for me to answer. Ronnie and I truly believe he is here for a purpose and that he has CF for a reason, and when he is done carrying out his purpose, he'll die. Ronnie has been comfortable with the thought of death and with God's plan for his life, so I knew that if I were his wife, and lost him, I would NEED to continue to have that attitude. I told him that I wouldn't marry him unless I KNEW that I could stand up the next day, put a smile on my face, and look people in the eye when telling them that Ronnie's life was just as it was supposed to be and that I trusted God's plan. So I quickly worked to get my thinking aligned with that so I knew that I could carry on Ronnie's attitude after he died. I don't know if that makes any sense, but that's where I am with all of it.

I still struggle. I cry at the thought of it. I get choked up when I think about it. I get choked up talking to others that have lost a spouse to CF. But I truly feel any amount of life with Ronnie is worth it to me. There is a huge religious aspect of this for me and Ronnie, and I'm certain that helps with my perspective. I don't know where you stand on religion, but I know that it is what really brings me peace with all of the uncertainty. I know that I'm being looked out for and watched over, so I feel as if everything that comes my way, good or bad, in sickness and in health, it is all part of a plan."

Comments (21)

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Mandi, I really appreciated your post. I am a widow to CF, but my husband's life was incredible. God had a plan for us and he continues to sustain me even after Ryan's death. CF and Ryan changed my life for the better because it has given me a better perspective. The road you are walking is not easy, but it is rewarding!
2 replies · active 792 weeks ago
That's so much for that!! I couldn't agree more about the perspective CF and CFers can give. I'd love to hear more of your story!!
You can find most of our story on our blog (it has been 20 months so you might need to go to archives or scroll a lot). You can also contact me via email. I enjoy reading your story from both perspective!
Patti Barbalich's avatar

Patti Barbalich · 792 weeks ago

My boys are not old enough yet for marriage, but as a mom, is is something that I have thought about for them. How/when do the boys tell her? Will she be strong enough? It isn't something I obsess over, but it is a thought from time to time. This blog is a great one on hope and on courage. I'm sure you have your days but you have the right priorities and I only hope my boys will find someone just as special. Thank you
1 reply · active 792 weeks ago
I can totally see as a mom wondering about these things. Your boys will know just the right time to tell their future spouse. The key is giving your little men the right perspective about CF, because she will take on their outlook. If they are positive, confident and not scared, she will be just the same!
I am married to CF Female for the last 7yrs and we were together for 5yrs before that. Although her lung function was reasonable she had another problem with her lungs that resulted her being transplanted in the first few years of our marriage. There were a lot of hesitations for me, but she is who she is because of her illness. She is now in her mid-30's we have a beautiful, intelligent 3yr old girl that did not affect my wife's health.
Trish Taylor's avatar

Trish Taylor · 792 weeks ago

When I first met my husband, currently of 14 years, I was honest with him about my CF. I told him how it affected my day to day health and that it definitely affected my prior marriage. I was worried that it might have the same affect with him and our newly found relationship. I warned him that I was close to 30 and that I did not know how much longer I had on this Earth, but I felt, too, that God had a plan for me and so did my beloved. Kevin knew that we belonged together no matter how much time we had. We both felt blessed, and still do, that we can spend each day we awake in each others' presence. CF IS a blessing... if you CAN look at it that way. I know I was given it for a reason and spread my love around as well as the education and awareness of CF to whomever will listen. It can be rough on Kevin when I become ill or he thinks I need IV treatment when I don't feel I have time or need it. It's usually just his worrisome, caring attitude that makes him think that way. We are all on our own path and if we can give love and receive it.... as short lived as it may be, it's all worth it in the end from what we can teach and learn from each other. I am now almost 45 and Kevin and I have been together for almost 17 years. If you ask him whether he thought I would be here today, he would probably say "No", but he is so grateful that I am and we both Thank God every day for His blessings.... whatever they may be. Marrying a CFer is NOT a piece of cake and if you are a "worry-er" ... GET OVER IT NOW, 'cause "worrying is like rocking in a rocking chair... it will get you no where". Transfer that worry into HOPE and try to be the best supporter that you can be in our time of need.
1 reply · active 792 weeks ago
WOOT WOOT - Married 17 years - that's AWESOME!
Helgi Kristjansson's avatar

Helgi Kristjansson · 792 weeks ago

I have been married to CF female since 1991. We started dating in 1985. For me this is simple. She is my life´s companion and best friend and we base everything on sharing and trust. We havent acctually talked so much about death but instead worked with every day as it appears. We are always positive (the glass is never halfemty, always halffull) and ready for our next projects and challanges concerning her health. We have 3 kids that did effect her healt but they are all our lights in our lifes. My wife has tought me a lot with her perspectives and made my life so much richer and for that I am grateful. I would never go another path in life if that would be a possibility.
Your perspectives Mandi are really matured and incuraging and worth concidering. Thanks for your thoughts.
Wow Mandi! Thank you for sharing your feelings with us. Ronnie and I think so much alike about CF being a blessing. I hope and pray that my girls will have the same positive outlook on their lives with CF that Ronnie does. This attitude certainly does help us keep moving forward.
1 reply · active 792 weeks ago
If you have the right attitude, so will your girls. It's all about being taught that CF can be a blessing.
Mandi thank you my daughter is 10 and has cf and I often wonder about her future with marriage and children I have always tried to look at things with a positive attitude but always worried. I was really relieved to see that someone else has the same perspective on things like I do I know that she has cf for a reason and when that reason is reached I will lose her and seeing those words wrote by someone else really helped thank you so much!!!
Crystal Jordan's avatar

Crystal Jordan · 792 weeks ago

I really like that you posted this. It's something that so many are concerned about. My CF was one of the main reasons my first marriage ended in divorce after only 3 years. Engaged again, I know how much it helps to develop those attitudes that you have, BEFORE getting married. My current fiance is so wonderful, but I'm going to have him read this article anyway, so he can see how others are dealing with the same things that he is with marrying someone who has CF.
Bryan Jones's avatar

Bryan Jones · 792 weeks ago

Great post Mandi. It's the peace that passes all understanding.
Amber Lee Tolbert's avatar

Amber Lee Tolbert · 792 weeks ago

That's a GREAT way to look at it~ "But I truly feel any amount of life with Ronnie is worth it to me."PRICELESS~ God Bless U Both!
Great post, Mandi! My son is 4 w/CF and my husband and I have the same philosophy about his life. We are SO blessed to have him as our son and have already witnessed the impact he has had on others because of his CF. We hope and pray that he will view this disease as a blessing and part of the call on his life as he grows up. I'm glad he's got somebody like Ronnie to look to as an example.
Beautiful!! I am a women of 23, with CF. I have a boyfriend for four years now, en he says he is with me because of who I am, and CF is a part of it. Without that I wouldn't have become what I am now. People like him and you are so special! I am speechless!
1 reply · active 792 weeks ago
Give him a high five for me :)
Mandi, this is so sweet. And I love the posts...very inspiring! I have a 20 year old son with CF. He has never had a girlfriend (that I am aware of) - though he has tons of friends, guys & girls and is very social. He is a junior in college. His freshman year he called me in the wee hours of the morning (I think he had been drinking) and talked to me for an hour about a girl he liked and how no one would ever want to marry him because of CF. It broke my heart. I told him I know there is someone for him out there. I do agree with you that your faith can carry you through the most difficult of obstacles. None of us know how long we have!
Aw Mandi I am so glad you shared this with us. I have been dating a CFer for over 2 years now and it's a thought that comes up a lot - specially since he's been so sick and had so many close scares. I can definatly realate to what you said.
For me - I feel like any time with him is better than none =) And I am truely blessed he is in my life.

Thank you - again - for sharing this. It helps to know I'm not the online one out there the partner of a CFer! I like knowing there are others to talk to about the rough issues.. heck even the good ones ;-)
Thats one reason I'm glad to have Cystic Life!!!! I like how the partner feature is on there - I hope to get in contact with some of the partners of CFers to communicate with them
Ron has been defying odds his entire life Mandi, chances are he'll be around long enough to be the best man at my third wedding...in 2025!

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