Switzerland Crumbles – Neutral No Longer

[This is part one of a two-part blog posting]

Take a side, you crazy country

I so enjoyed my vacation in Switzerland . . .

A blogger’s recent post has upset me. And I’m not sure why I’m so upset because the blog’s author is someone I respect and who has really given back to the CF community with her brains, opinion, and drive to help others. I’ve read her comments over the years at cysticfibrosis.com. I’m a fan.

And yet, the following post got me heated.


A week later the post festers in my mind and won’t go away.

Here’s what bothers me: It feels like the title should really be – If you have CF, don’t have kids because you’ll cause them pain when you die. That’s the hidden message the commentary and the included WSJ article deliver to me. I’m not sure if that was the author’s intent, but it’s my interpretation of her words.

So, let me be clear with my position so there is no gray area: If you have CF and want children, and are able, have them. It’s your decision. That’s as “in a nutshell” and clear as I can be.

I’ll take any heat coming my way for the statement.

My brain for the last week

The blogger writes in the last line: “the focus on the decision needs to be all about the child.” It’s such a confounding statement. My wife and I had a child for ourselves, too, not just the child. I wanted a child so if something happens to me, my wife isn’t alone, though I’ve never shared that with my wife.

But we also had a child because we wanted to have fun and enjoy life as parents. And we put great care into the decision to ensure she will be raised well and by family if something happens to us.

In the scope of life and the unique make-up of families in today’s society, how different is the decision for CF parents to have kids? Should we have to contemplate worst-case scenarios any more than others? What about best-case scenarios?

There are more drugs on the way for CFers than at any time in the history of this disease. The care is the best it’s ever been.

What if someone decides not to have children after reading the post and then lives to 70? Regret like that tastes terrible.

The odds yesterday are not the odds tomorrow. Life changes. Hope arrives.

That’s not to say CF parents shouldn’t think about their situation. Anyone considering having kids should.

I can think of a whole lot of people without health issues who should rethink having kids if you look at potential risks to the child. And that population is larger by far than CF parents wanting to enjoy life while suffering from one of the worst diseases known to humankind. Or, should only a select few who have perfect, ideal lives have kids? How many parents would have kids if that were the case?

The WSJ article bothers me, too. It begins with a hypothetical question: “Would you give up a year of your life to have one more day with your late mother or father?” Hypothetical questions are the easiest to answer. Yet, only 57% answered yes to a softball of a question. Thankfully, 43% saw that the price was too high – one year for one day.

What if the choice had been real? How many would have really made the swap?

There’s a certain paradox to the situation discussed. Would the children who have lost parents decide not to be born? If the parents knew there was a chance they would die, would they have not had the children and would the children be okay with never existing? See, it gets confusing for me.

Life is painful. Who’s to say some of these kids wouldn’t have had the same problems with two parents. And who is to say once they weather the storm of losing a parent, their lives won’t eventually be fantastic. Why not ask them hypothetically if they’re rather not be alive if given the choice?

I’m grateful the blogger wrote the post. My heat has transformed to thankfulness. I will be more prepared to discuss this subject with my wife and educate her with what might happen to our daughter when I’m gone. And I can tell you that had I read the post before having our child, I would have chosen our same path without hesitation. The eight years my wife and I have spent with our daughter have been the best of our lives.

At this point, our Wii-playing, book-reading, Smarties-eating daughter would agree that being here, alive, is a great joy. I doubt she’d want us to go back in time and change our decision. And if something happens to me, she may suffer. But there is also the chance that like a Phoenix rising from the sorrow, she may channel that emotion into something great, whether it’s her love for her family and friends, or playing a wicked guitar to an audience at the Hollywood Bowl.

As long as she’s happy, I’m okay with anything she does.

To be continued . . .

42 thoughts on “Switzerland Crumbles – Neutral No Longer

  1. I’ll respond as simply and unemotionally as possible and see if I can win the clarity contest:

    “Remind me that my days are numbered.” Psalm 39:4

  2. Here’s the thing. I’m not that familiar with “no excuses,” because, the very name of the blog implies that those of us with progressive illness got here because we “made excuses” or didn’t “work hard enough,” sorta going along with the theme in CF culture right now, that if you have extreme exercise goals, then you are immune to the progression of a genetic, cellular disease, though there is no evidence to back that up. There IS research that moderate cardiovascular exercise improves the health of CF, but the rest of it is all a gamble. I have seen the most committed, most compliant, most drive CFers succumb to the disease, and the most lax, lazy, rebellious survive and thrive- and more power to them. We all have to live the life we have and choose- and I say, no excuses for avoiding THAT.

  3. For expanded commentary:

    No one, no one knows how long they have, thus it is no more cruel for someone with CF to think about bringing a child into the world than anyone else, because the other parent could die in a car accident the very next day. To limit oneself because of CF for reasons other than “I am physically unable to X or Y with the body I’ve been given and the state of the medical community today” is STUPID.

    I’m proud of you for having your daughter. More power to you.

    • Thank you. I am very proud of my daughter.

      I do think “Big Picture.” Of all the things going on in the world, us having children shouldn’t move the needle.

      My wife and I treat my health challenges like business as usual. One of my favorite memories of the hospital is scootering down the parking garage with my daughter. We will always make lemonade from these events.


  4. Ugh… I assure you that my two children would rather be alive and have this time with me as thier mother, even if I do die sooner than other mothers. I am providing them with a much better life than many even are able. That blog is hurtful to people like myself, who have made an educated decision to bring children into this world, regaurdless of CF. I’m bothered…it kinda makes me sick.

    • It’s really no different than saying we shouldn’t get married because it’s not going to be fair to our spouse. Children are far more resilient than adults. Any study showing that kids whose parents die from a disease they’ve known them to have their whole life is bunk.

      • Very true, CFF. Kids are. I still have to be prepared though. I don’t want her to be sad her entire life, though. Interesting point you bring up about our spouses. Yes, the same argument could apply.

    • Stacey,

      I believe we’ll both be around a long time. I was really ticked when I first read it, too. Boiling hot. It’s taken me a week to write about it. I’m trying to turn it into a positive. I’m almost there with it. I don’t plan on going anywhere soon. I will use it to prepare for a worst case scenario for the best interest of my daughter. I think one thing that is very interesting in the WSJ article is how elements of their parents can help. The article confirmed my choice of writing a blog for her.

      Thanks for commenting.


      • It was just such a jump and such a judgemental one for the blogger to make. The article seemed to focus more on inadequate services/supports for these children, which is a societal issue. To make the leap that an entire population of people should never concieve is astonishing. I am FUMING!!! Breathe, Stacey, Breathe…

      • Please breathe, Stacey, please. They are only words and not reality. I stand strong that my wife and I made the right decision. I think it took me a week to blog about the post because I couldn’t be sure what exact position she was taking. It seemed passive aggressive? But the combination of her words and the WSJ created an opinion for me that made me angry. She may have a different opinion but she is on our team and helps others with CF, though clearly not me with that post.

  5. I am a Master’s Level Social Worker working in oncology. I work with grieving children all the time. I have yet to meet ONE who has said that they would have wished to never have been born if they knew a parent would die. I commented on her post, but I’m pretty sure she won’t approve it.

    • Thank you for this information. It’s good to know. That’s why that WSJ article burned me so much. The foundation seems flawed or they didn’t raise that point. Or the combination of the blogger’s comments and the article threw me off. I’m not sure. I would have liked the WSJ article to include more stories of children who have kicked ass in that situation. I bet there are some in the 43% who have, or the 57%.

  6. I’ve heard of “No Excuses” but I’m not a faithful follower so I’m not familiar with the post. Fatboy said it right. There is no guarantee that ANY of us are promised tomorrow. Funny and true- EVERY visit to the ER, and we’ve had several in the past 2 years, has been due to something completely unrelated to CF. It’s been because he’s a 2 year-old boy.
    Reminds me of 2 arguments: quality of life vs. quantity of life and the old standby debate: Should CF parents, or carriers, continue to have children knowing others could be born with the disease?

    • I’m knocking on wood right now that we’ve only had to make one trip in 8 years to the ER. Knock on wood.

      It’s interesting argument you bring up. I had some of what you write about in one of the many drafts I fought with, but took it out. This was a though post to write. I don’t think it’s perfect. But I feel better now that it’s on the screen. But I must say, there is still a little ball of anger rolling around in my head.

      Thanks for reading and your comment.

  7. Parenting is not the route we’re heading. Mostly because even at 28, I can barely manage my time well enough to take care of myself and we don’t have a strong enough desire to be parents to make the sacrifices we would have to to raise children the way we’d want to. We decided this years before we were married. I would never expect someone else to come to my same conclusions. I would never preach from my soapbox about why my choice should be others’ choices. Just like everything else with CF—we don’t fit into a box. Everyone’s disease course is different, even when we have the same genes, so why assume we should all follow the same parenting/not parenting path? I feel like if anything, adults with CF are even more emotionally prepared for parenting/not parenting just simply due to the maturity that comes from excepting your disease. I hope No Excuses was just trying to inform, as she usually does, rather than begin a partisan debate. Her blog isn’t very personal, so it’s hard to get a feel for the person behind it and judge on more than just the words in the post.

    Stay well and keep enjoying your delightful daughter. Children her age are my favorite because they are so inquisitive. Minds like sponges, but rock-solid personalities!

    • Nanos,

      I really like your Zen-like nature when you write. I always feel calm after reading your blog or comments. It’s quite nice.

      I really like NE. I really do. She sometimes states the hard opinions and takes the heat. She works hard to help others with CF. I’ve reread her post. Was it to inform? I’m not sure because of the commentary added to the WSJ article. I hope she reads my post and the comments and decides to respond. She, like all of us, is entitled to her opinion. I don’t happen to agree with the one she gave this time.

      Thanks for the good wishes. My daughter is a sponge, but sometimes a grumpy sponge. 🙂


  8. Im going to take a moment and say f4%k that s&@t. So perhaps then if you shouldnt have children to begin with, then I should have no more children? or perhaps i should go the route of IVF with PGD….have embryos out of the wazoo and only pick the “best” ones the ones who arent “flawed” with the CF mutations? then what with the ones who do have CF? kill them? they arent worthy to live because they have CF? embyos not being viable and just having some disease you dont want them to have are two very different things. ugh! this kind of thing irks me. Natalie is the most illuminating loving child, full of life, full of curiosity, she’s beautiful, shes smart, and Id be crazy not to have 10 more if I could afford it and didnt fear the wrath of my 10 year old 🙂 CF sucks, that’s a given. But if we allow it to dictate everything then not only are we “suffering” from this disease, but we are suffering in life with this disease. I do my best to make every moment BETTER because of this disease, make the moments count. I dont think that I did that before Natalie came along, and what a disservice it was to my older “healthy” daughter. Im not going to sit here and pretend that CF made my life better, it didnt, its hard, it sucks. But it did make me appreciate my life and the life I have with my girls, however long that may be. Whew. Think Im done. ~J 🙂

      • Thanks CG 🙂 I have my moments. UC – you know i have to, I rooted for them before it was cool. Maybe now I can find another under dog team to root for, maybe im a good luck charm, never know 😉

      • I know you have to root for them. 🙂 Now I have to root for them because you’re my friend and I have to root for my friends’ teams. There is only one team I can not do that for – the Raiders. My hate runs too deep for them.

        I’m hoping for a Broncos/Saints Super Bowl this year. Broncos 38, Saints 37.

    • oh and if it is a Broncos/Saints Superbowl, it’d be awesome either way…..i would have been cool with it if Favre had gone this year, he’s from just around the corner….but now, now its just getting rediculous and he needs to retire….anyhoo, dont get me started on football, id be here all day 🙂

  9. I’m in my 50s with CF and would give anything if I’d had children!! And, I had the most awesome mother ever who died when she of a stroke at 50. Without hesitation I can say I’d rather have had her as a mother than someone else who happened to live into their 80s.

    Several of you are spot-on as to where the original blogger’s logic flows… deciding who is fit to live or not, and how. This is worth getting ticked off about, UC!

  10. Pingback: Letter To My Daughter – 6/23/10 « The Unknown Cystic

  11. I just wrote this big long comment that just kept getting bigger and longer, so I’ll just wait and actually blog about this myself this weekend.

    I probably won’t have kids. But that’s because I’m a big brat, I think parenting is a huge and amazing and humbling responsibility, and I don’t know if I have what it takes to be the kind of parent I would want to be – not because of CF.

    My issue with NoEx’s post wasn’t the basis of her opinion – that she doesn’t think it’s neccessarily the best idea for a person with a genetic, chronic illness from which they already “suffer” to have children. I disagree with it, but I haven’t always, and I respect the basic position. My issue with her post was the incredibly narrow-minded, condescending and borderline cruel tone with which she referenced CF parents, as if all CF parents are only having kids to fulfill some psychological void, or prove something, don’t care about anyone but themselves, and are completely incapable of actually being good parents, let alone anything but a burden while alive and a sad memory when gone – as if, by extension, non-CF parents are all naturally equipped and driven to be fabulous parents, by default.

    I have a much, much bigger issue with people (healthy or otherwise, as there are “sick” parents who do so also) who just have kids because it’s the next socially-prescribed step, and don’t really care that much about, ya know, raising them to be tolerable and productive members of society, particularly those who have the knowledge and the resources to do so, and just don’t care enough to invest in their kids.

    And with that in mind, I say your daughter is lucky to have you, specifically, as her dad :o)

    • Jessica,

      The best part of having a blog is interacting with readers and receiving comments. Your comment and comments from others prove that point. I struggled with my post for two days and could not articulate everything about the NE post that bothered me. I was just happy to get something coherent down on paper. You and others have done an excellent job figuring out what I could not. And you’ve nailed it with the tone. You are spot on. It’s there beneath the words and wasn’t apparent when I first read it, but obviously sunk into my subconscious and caused it to boil. Now that I have two posts out that have to do with it, I feel better. However, there is that little nugget of anger still flickering and I think it has to do with tone.

      I do respect and like NE. Look at her great site and all of the CF information. It’s wonderful. I just don’t agree with her on this one opinion.

      Thanks again for your thoughtful comment.


  12. Hey John –

    Instead of quoting you, I linked to this post from my most recent blog. You said it so well! If you notice increased traffic that may be why…

    By the way, you’re cool 😉


    • Stacey,

      Thank you for the heads up. I’ve really been enjoying your blog, especially your post regarding improving the lives of kids with cancer. Lump in my throat thinking about it. I’ll check out your new post. I can’t wait to read it and see what you have to say about the subject.

      I’ve never been called cool. Fox has, but not me. This is a first. I’m not sure what to do. 🙂 I feel I should change my life to be more “cool” now. 🙂 Or, I can just buy new, cooler clothes. Hmm, what to do?

      Thanks again,


  13. Hmm… what I noticed about the article that no one I dont think mentioned yet was that most of the people that had parents that died young (some due to freak accidents) STILL had their own children… to me by this logic, then they should not have had children b/c they would know that they could die also from a freak accident.

    #2) Some said that children gave them a reason to live again… I would say that Cf’ers that have children might use that as another goal to stay healthy (as can be) and keep up compliance etc…

    • PS: I read part II and realized that my point number 2 was clearly executed… and very well I might add.

      PPS: I really liked the discussion on this, respectful, intelligent and truthful… I have opinions on this (and another topic of debate mentioned about parents having children even after one is born with CF) and realize that in a, just for me, basis I need to get them all out and on paper (or screen).

      Thanks for eloquently and knowledgably writing your views out without a hint of condescending tone.

      And finally, lastly (I swear), I am on CF.com too and I know NE, I too respect her, but have not always agreed. And often I felt that her ‘no excuses’ is directed at people like me… (along the lines of what CG said).

      Okay okay… one last thing… what about the 49’ers?? hahaha

      • Let’s address your 49ers first. I used to love that team when Montana and Rice played. They are a CA team so I like them, though I don’t follow that rule for the Raiders, who need to lose every game they play.

        Your comments are really great and I thank you for taking the time to leave them here. I hope you visit and comment again. My daughter gives me great incentive each time I blow into that damn flutter. No one live life without trying to live the full dream. Too many people have worked to hard to give us the years to do exactly that.

        Best to you,


  14. Pingback: Unknown Cystic, I Mean, Fox

  15. Pingback: The Power of Two – Letter To My Daughter – 6/23/10

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