Cystic Fibrosis, Relationships and Wanting Children

[Lance2020x]

I'm curious about those with CF and their desire for children.
I'm dating the most amazing woman I've ever met, and she has been a better support for me and my health than I honestly knew how to imagine a significant other could be.

She wants children more than anyone I've ever met, and obviously that's a bit of an issue in my situation. Yes- There are ways to get around this issue, but it can take a LOT of work and a massive amount of finances. What it comes down to is this: Though I DO want children- when it comes down to it, because children aren't as big a priority to me as they are to her she's afraid I won't do what it would take (which could be years of stress, time, finances, etc.) to really make it happen.


So my question is this.... Because I've never known life WITHOUT CF and the fear/mindsets/challenges therein, I don't know if my "Sure that would be nice" attitude about children is simply because that's the way I am, or because for 28 years -though I wanted and dreamed about someday being a father- I'm not sure if I ever really believed I could hope for children or would live long enough to have children or could have a family.
Is this something that others have struggled with as well? Is this one of those nasty emotional side effects of CF or is this just something in me?


I apologize for how lengthy this post is, I love this woman more than I've ever loved anyone or anything, and I was in tears when I started writing this because she just left after discussing this for hours and I love her so much that if I can't give her those dreams I'd rather her be with someone who can, and that's tearing my heart apart.

 

[Aboveallislove]

I'm so sorry you are having to suffer this. I can't speak from the cf perspective, but from the gender perspective. I can relate to her feelings as many of my female friends relate as well, whereas it doesn't seem that men express the desire in such ways...so not sure if it more gender related than cf. the other thing though to think about is that going into marriage many think having babies will be a given...you just don't know that might be the case. She may end up having issues getting pregnant. I've had girlfriends who were desperate to conceive and never did. It is a true heartache, but they have children they adore through adoption. They didn't go into it know that they would suffer from infertility, and one ended a relationship because he didn't want children to learn later she couldn't have children. It is a true suffering for both and I'm so sorry you have to worry for yourself, but also for someone you love.

 

[triples15]

I'm curious about those with CF and their desire for children.
I'm dating the most amazing woman I've ever met, and she has been a better support for me and my health than I honestly knew how to imagine a significant other could be.

She wants children more than anyone I've ever met, and obviously that's a bit of an issue in my situation. Yes- There are ways to get around this issue, but it can take a LOT of work and a massive amount of finances. What it comes down to is this: Though I DO want children- when it comes down to it, because children aren't as big a priority to me as they are to her she's afraid I won't do what it would take (which could be years of stress, time, finances, etc.) to really make it happen.


So my question is this.... Because I've never known life WITHOUT CF and the fear/mindsets/challenges therein, I don't know if my "Sure that would be nice" attitude about children is simply because that's the way I am, or because for 28 years -though I wanted and dreamed about someday being a father- I'm not sure if I ever really believed I could hope for children or would live long enough to have children or could have a family.
Is this something that others have struggled with as well? Is this one of those nasty emotional side effects of CF or is this just something in me?


I apologize for how lengthy this post is, I love this woman more than I've ever loved anyone or anything, and I was in tears when I started writing this because she just left after discussing this for hours and I love her so much that if I can't give her those dreams I'd rather her be with someone who can, and that's tearing my heart apart.

Hi Lance,

Don't need to apologize for the length of you post! You call that long?? LOL.

So, obviously, all I can do is guess, but my theory is that your thought/feelings about having children are a combination of 1.) thinking your entire life children were not and option and basically ruling it out for yourself (even if on some level subconsciously) and 2.) Something just in you.

I think when you have CF, unless you have a HUGE, almost impossible to suppress drive to have a child, it's something that many (or most) people rule out. So mix your lacking of a strong innate sense/drive to have a child, with the fact that you have CF, and wallah! This definitely doesn't mean that you don't want children.

This may offend people, and I really hope not, but the general population (no CF) is FILLED with people with ambiguous feelings about having children but go and have them because "that's what you do".. You know? It's the next step in life type of a thing. Well for us, it's not like that. Sooo much thought/planning/effort/finances have to be put forth that it makes the decision much more difficult. So, as you said, if the drive isn't there, it probably isn't going to happen.

I'm really sorry you are facing this with your significant other. Just one of the ugly issues we deal with. I understand her feelings about children because I always felt the same way. Wanted to be a mom more than anything else. Now we have a 2 (almost 3) year old daughter!

If you do decide to stick with it and pursue having children in the future, there are a few options. There is a scholarship available to cover IVF, and I know of a family (male w/CF) who used this to have their children (triplets!). Also, many fertility clinics offer payment plans/low or zero interest financing. There is also foster/adoption that is free. I have a friend (w/CF), who adopted a newborn through a foster/adopt program 2 1/2 years ago. She is the most beautiful and amazing little girl!!

Anyway, I know either way you're not looking at having a child right away, but wanted to mention that there are option now that might not force you into poverty. Having a child is personal decision that is hard for anyone to make, and throw in all of our "what ifs" and it makes it a million times harder. I hope you are able to find peace one way or the other and don't lose this gal that you love so much!!

Take care,

Autumn 33 w/CF

 

[julie]

The questions you have about considering this major life step are COMPLETELY normal. I remember my ex husband (who has CF) and I discussing the very things you mentioned. Ultimately, we decided that we WERE going to have kids but we were going to make sure there were "safety nets" in place financially in case anything happened to either of us. This meant life insurance policies, hospital indemnity policies and such so that the kids could be provided for without major struggle.

I know he shares my sentiments in the fact that it was the best decision we ever made. If you have any specific questions about how the medical procedures work, please feel free to message me. Also, check out my website https://web.archive.org/web/20140113125355/http://cysticfibrosismaleinfertility.com/

 

[Jet]

It was the best decision we ever made. We did wait to be better prepared financially. We had are first when I was 34 and the last at 37. They've certainly been a big reason for me taking good care of myself. I'll admit I had the same thoughts and concerns you've expressed. I had a lot of anxiety in the beginning about having them and the thought of getting really sick or not begin there for them. However I think my CF in a way has been good for them too. They've seen first hand that people have to deal with all kinds of challenges in life but it doesn't have to stop you from being happy.

 

[welshwitch]

Help! I'm in the same boat too! I really want kids but am worried (worry myself too much in fact) about all the effects my CF is going to have on the equation. You're SO not alone! And people with CF have kids, men and women! I guess it all comes down to YOU and your life! Hang in there! <3

 

[Lance2020x]

Thank you all so much for your encouragements, kind words and identifying affirmation.

As a quick update, my incredible lady and I had some very difficult discussions about the realities of my situation but are still growing together and having faith.

I'm scheduled to get a sperm test next week and she will be getting a test to determine whether or not she's a carrier. It's quite frustrating and frightening to realize that my circumstances may make life very difficult for the woman that I love, but she continually blows me away with how involved and supportive she is and we're in this together and trusting that The Lord is in this relationship.

There is a scholarship available to cover IVF, and I know of a family (male w/CF) who used this to have their children (triplets!)

I really appreciate this info, do you happen to know anything about this scholarship program?

I know he shares my sentiments in the fact that it was the best decision we ever made. If you have any specific questions about how the medical procedures work, please feel free to message me. Also, check out my website https://web.archive.org/web/20140113125355/http://cysticfibrosismaleinfertility.com/

Julie thank you so much for this info! That is incredibly helpful.


As I mentioned my girlfriend is INCREDIBLY helpful when it comes to my health. She's the biggest support I've ever had and she's probably going to join this forum just to get more information and ask questions, so I'm going to point her to this topic and Julie, your information will be very helpful to her, so thank you all again!

 

[triples15]

You're welcome Lance! So glad to hear that you are exploring options together. Doesn't hurt to be more informed and make decisions from there.

The scholarship is called INCIID for the Heart. Here is the link: http://www.inciid.org/ivf-scholarship-program

I think there are hoops to jump through, but may well be worth it to save you the money.

Take Care,

Autumn

PS. Also, Julie is definitely an excellent resource!!

 

[imported_Momto2]

Hi there. I was in a similar situation. Had a totally ambivalent attitude toward having kids, possibly even slightly against a family, although I worked with kids extensively growing up and really loved it. My husband was also not interested in children, primarily because he didnt want to put my health at risk and he thought that there were all ready too many kids w/o parents. One night at a party I watched a mom and her baby interacting and it was like a switch turned on. I suddenly wanted kids, badly. I think most of my previous attitude was due to the fact that I never thought a family was possible, so I guarded my heart by telling myself I didnt care. Anyway, I Thought about it for a while, talked to husband. We decided that adoption was perfect for us. (I was primarily concerned about being put in a situation where I'd have to choose between taking a medicine to keep myself healthy and hurting a fetus with the meds. ALso making myself sick with a pregnancy was NOT a good way to start motherhood). 14 months later we brought our first daughter home, 4 years later, our second. They are both amazing.

Yes, having kids (the sleepless nights, constant demands, worrying over a high fever or an issue with a peer) have been deleterious to my health. Has it been worth it? ABSOLUTELY. And yet, with kids in the house you will get sick more often. Its just the way it goes, but handwashing and other precautions can really help.

 

[triples15]

I think most of my previous attitude was due to the fact that I never thought a family was possible, so I guarded my heart by telling myself I didnt care.

This.

I agree with your post all around, but you summed that up perfectly. That's pretty much what I was trying to say in previous, long rambling post, but you summed it up in one sentence.

 

[Deirdre Kay]

You have probably convinced yourself that you can't have many thing because you have CF. This is definitely a symptom of having a chronic illness (IMO), but I think it feeds off of fear. I have had these same feelings, for year after I was diagnosed. Once I decided to fight CF, I have come a long way from where I once stood. I used to feel there was no purpose in a long term relationship, marriage, or having a family. Hell, I also felt school was a waste of time because I convinced myself I'd die young and fall short of my each and every dream to have the things I truly wanted. Well, I'm in a beautiful long-term relationship, talking marriage, and even talking about having children, all the while graduating from college and currently planning out my dream career.
I choose every day not to live in fear and not to let CF scare me away from my dreams. Life is never guaranteed, and this idea that we would have a longer, healthier, happier life without CF is simply not in touch with reality. You have CF, and you have found love and you have found joy. So why not keep it going? Whether you have a problem with fertility or not, it's important that you at least try, and stop letting your fear get the best of you.
In my humble opinion. Because we deserve happiness in all the ways we truly want them, CF or none.
After writing all that, I saw your update Glad to read you're trying!! Best of luck to you both!

 

[julie]

Lance, I'm the person they were referring to about the IVF scholarship. We were actually selected and awarded it but were already pregnant. It's through www.inciid.org

here is website listing a bunch of reputable grants: http://www.affordingivf.com/2012/12/15/ivf-grants/

One thing I can tell you though, we spent $15,000 out of our own pocket. It took us until they were 6 to pay it off. But it was worth every penny and I would do it all over again!

 

[suros8]

Hey there, my hubby has cf and I've always wanted children. We are going through IVF, and I have to tell you that it's heart crushingly difficult. One of the questions I ask myself is, do I want to be pregnant, or do I want a child? Different methods, same end. We are trying because I want a child from both of us. But with one chance left, we will move onto adoption knowing we have it our all. Even if you have a negative sperm test, you can have a TESE done and get enough for a few rounds of IVF. It's possible.
Sue-hubby with cf, 34.