What It's Like to Have a Kid With Cystic Fibrosis

Cystic Fibrosis means your cells can't take out the trash: Salt gunks up your system, which causes mucus to form. That's really bad in places like the lungs, where it can lead to severe scarring and require a transplant. My son was diagnosed with CF in utero. I was 5-months pregnant. He's almost 8 now. Here's what our lives are like:
  1. You're going to cry a lot at first.
    Well, of course you are. It's not a happy diagnosis. They wanted to put me on anti-depressants and I was like why? This is what it's like to be sad!
  2. You're going to spend waaaaay to much time on Google.
    You're going to read everything about CF. And then you're going to start reading about other things that parents are dealing with and wondering why we're all so mean to each other. Everyone has something going on their family. You are not alone. Also, more crying.
  3. You're going to argue horribly with your spouse.
    Here's something I learned hanging out with other CF parents: One is always more nuts than the other. And you can't predict this before it happens. No one knows how they're going to react to ANY diagnosis until it happens. The crazy calms down over time. Or it should.
  4. You're going to get hyper-involved in fundraising.
    You feel like that if you can raise enough money then you can FIX IT. You can't fix it. You can, however, drive yourself and everyone else crazy raising money. This is hard to sustain, and God bless the people who stay at it every year.
  5. You're going to be stunned at how little the medical community at large knows about CF.
    There are only 30,000 people in the U.S. with CF, about 70,000 worldwide. Most doctors you'll meet have studied it, but only a few will have had a CF patient. And now that you can detect CF before birth, there are fewer babies born with it. It's just a fact. Don't take it personally.
  6. You're always educating someone about CF.
    CFers cross-pollinate, meaning they make each other sick. Some CFers need pancreatic enzymes before they digest any food with fat in it. CFers make a lot more mucus than you do, so it's a big deal if you get them sick.
  7. You're going to have a lot of conversations over and over.
    Is it like asthma? No, not really. In fact, Charlie has CF and asthma. Will he outgrow it? Nope, it's genetically coded into his DNA. Can you just get a lung transplant? The goal is to avoid a lung transplant via daily respiratory therapy; lung transplants don't cure CF.
  8. You're going to develop some new skills.
    Describing what CF is; ordering prescriptions; noticing when your kid is getting sick; developing a two-person, unspoken action plan when your kid gets sick in the middle of the night; getting teachers up-to-speed; appreciating how tough your CFer is (especially during unpleasant medical procedures.)
  9. You're going to get really good at trusting your gut.
    When Charlie was an infant, he couldn't sleep or nurse. The kid was chock-full of snot. But during the day he looked bad but sounded fine. We kept asking the doctor. Turns out Charlie had a terrible sinus infection and needed an a two-week hospital "clean out" with some powerful antibiotics. No one knows a CFer like a CF parent. Trust your gut.
  10. Your day just got longer.
    When Charlie is healthy, he needs 20-30 minutes of respiratory therapy in the morning, and another session at night. He uses a vibrating vest to shake the mucus loose, which means that he needs some time after supper before we shake the snot out of him. When he's sick we add sessions and/or medicines. It's called "exercise" and it's just a part of our day.
  11. You're still going to have really bad health days.
    Because the weather is giving him a sinus headache. Because he caught a cold and he's full of snot. Because the air quality is poor and making him "chunky." Because he got too hot, and his skin is excreting so much salt that he is miserable. Because he grew and his medicine is now out of whack. It just happens.
  12. You're going to stop thinking so much about the worst case scenario.
    I mean death. The average life expectancy of a CF kid has changed dramatically just in my lifetime: From 2 to 18 to 37. Now they're saying that Charlie will likely live into his 60's. I'm betting that they'll find a cure in his lifetime.
  13. You're going to start realizing that he's a kid who happens to have CF.
    He's 7. He's really into trains, art, and music. He is kind to everyone. He sings to himself when he wakes up. He always has multiple girlfriends. He's really good at math. He has trouble sitting still. He has always had a remarkable belly laugh. He is handsome. He is my baby boy.