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