hithisiseli

What a juicy - and good - question. I don't regret having Eli at all. He is a light in our lives. I'm not religious. We didn't know about CF beforehand. Still, he has changed me for the better in every way possible. I believe we will cure this disease in his lifetime. And I'm a jaded-ass journalist.

Great question. Absolutely. Because we talk openly about cystic fibrosis, what it means and staying healthy, I don't envision any kind of "sit down" where we tell him he's got a deadly disease. For now, that is of more concern for me with his sister, Laila, who is 5. She is super in tune with her surroundings, observant, smart and...obsessed with death. Every time she spins a tale, the lead character dies. is "deaded," as she used to say. She likes to talk about my mom being "dead." (My mom died five years ago of cancer when Laila was 6 months old). She wants to know if my mom is in heaven. She wants to know more about the gravemarkers we see on the side of the road. "Are they in heaven? Are they dead? Did someone die there?" She loves the idea of heaven. I'm not even sure if I believe in heaven, but for now, I tell her, "Yes, they are in heaven. My mom's in heaven. One day, that's where we'll all be."

Do I know if it's true? No. Do I know that it's not? No.

There's a lot we don't understand or know.

She's not asked directly about death and Eli's disease, but if she did, we'd be straightforward with her.

The same goes for Eli. I think it will naturally come up as he gets older, and we won't hide anything.

At the same time, our attitude has always been: "Everybody is born. Everybody dies. Life is a terminal condition."

Are you guranteed tomorrow? Am I?

No.

I would say the nurses who stood out were just super detail oriented plus caring. We had good and bad nurses during Eli's first few months of life. He had two surgeries as an infant to unplug his guts - a CF-related condition called meconium ileus plugged him up. So w/ about 30 days in the hospital, I saw a lot.

Thanks, and yes, HUGE strides. We are very hopeful. Parents got together about five decades ago, sick of their children living such short tragic lives. The Cystic Fibrosis Foundation was formed to privately fund science for a cure. We are getting close, though we are billions and years away. Still, the prognosis is rapidly impoving.

Insurance covers it and it makes our lives easier. We love it. There is even a cordless version that has come out in recent years. Those in the CF community are raving about it. By "raving," I mean, a friend of mine who got the cordless version was over the moon her daugher coughed up some weird, brown shit at 9 years old. She wondered - 'wow, was that crap just pooled in the bottom of her lungs for the better part of a decade?' This new vest just moved it on out of there! And I'm over here like 'I want my son to cough up weird brown shit! Gotta look into that cordless shaking vest STAT!" We get excited about strange things in the CF community.