Hi, and welcome! I'm Gwen. My husband Matt drives a delivery route here in Boise and I work three mornings a week at the front desk of a dentist's office. We have two kids. Kristen is six, and she started kindergarten this fall (more on that below!). Levi is three, and he is mostly made of trucks and peanut butter.

Kristen has cystic fibrosis. Levi doesn't. We started this page because when Kristen was diagnosed I sat up night after night looking for anything written by a regular family, and there wasn't much. So this is ours. It's what CF is, as best we understand it, what an ordinary day looks like at our house, and why we walk every May.

Please remember we are parents, not doctors. Every child with CF is different, and every family's routine comes from their own CF clinic. Ask yours!

How We Found Out

Kristen was born in June of 1993, a beautiful, loud, hungry baby. She ate all the time. That was the strange part: she ate and ate and she just didn't grow the way she should have. By her four-month checkup our pediatrician was worried, and he asked us a question I'll never forget: "Does she taste salty when you kiss her?"

She did. I'd noticed and thought it was cute.

He sent us to the hospital for a sweat test, which sounds awful but doesn't hurt. They put a little medicine and a mild electric tingle on her arm to make it sweat, collect the sweat, and measure how much salt is in it. Kids with CF have very salty sweat. Kristen's was. Two days later we were sitting in the CF clinic with a doctor drawing pictures of lungs on a paper towel.

I'm not going to pretend that week was anything but terrible. I cried in the shower so Matt wouldn't hear me, and later found out he was crying in the truck so I wouldn't hear him. But I want new CF parents to know this, because I needed somebody to tell me: it gets better. Not the CF. You. You learn the words, you learn the routine, you learn your kid, and one day you realize you haven't cried in a month and you're laughing at the breakfast table again. We got there. You will too.

What Is CF?

Here's the way our clinic explained it to us, and the way I explain it to the other moms at the park.

An Ordinary Day at Our House

People ask "what's it like?" and the honest answer is: busy. CF care is mostly about keeping the lungs clear and getting food digested, every single day, whether she's sick or not. Here's a regular school day. Your clinic's plan for your child will be different!

Summer and salt. Because people with CF lose so much salt in their sweat, Kristen needs extra salt when it's hot, especially on those 100-degree days we get in July. Our clinic told us to salt her food and keep salty snacks handy. Kristen thinks this is the best medical advice in the world. She is the only kid at the pool whose mother says "have some more pretzels."

Hand-washing and germs. Germs are the enemy, because a cold that's no big deal for Levi can turn into a lung infection for Kristen. So we are the hand-washing family. We wash when we come home, before treatments, before eating. Everyone in the house gets a flu shot every fall. We keep a pump bottle of hand gel in the van and in her backpack. We politely skip birthday parties when the host says "oh, a couple of the kids have a little cough." It isn't about being fussy. It's about keeping her well.

Clinic. Every three months we go to CF clinic, where she sees her doctor, a nurse, a dietitian, a respiratory therapist and a social worker all in one visit. They check her lungs, her growth and how the routine is going, and they do a throat culture to see what germs are around. Kristen gets a sticker from every single one of them, so she now considers clinic day a sticker collecting expedition.

The hard nights. I promised myself I'd be honest on this page. Some nights are hard. Last February Kristen got a cough that wouldn't quit, and she spent twelve days in the hospital on IV antibiotics for what the clinic calls a "tune-up." I slept in a chair that folds into a bed (it doesn't, really) and Matt held down the fort with Levi. She came home pink-cheeked and bossy and back to normal. But there were a couple of nights in that hospital when I sat in the dark listening to her cough and I was more scared than I've ever been. If you're in one of those nights right now, I am so sorry, and I'm thinking of you. Write to me. I'll write back.

Why "65 Roses"?

This is a story just about every CF family knows, and it's my favorite one. Back in the 1960s, there was a mother who had three little boys with cystic fibrosis. She was spending her days on the telephone, calling everybody she could think of to raise money for CF research. One of her little boys listened to her make call after call. One day he came to her and told her he knew what she was working so hard for. She was working for "sixty-five roses." He'd been hearing the words cystic fibrosis all that time, and to a little boy, that's what they sounded like. Ever since, lots of families and kids with CF have used the rose as their symbol, and "65 Roses" is what lots of little kids call it, because it's so much easier to say. Kristen says it. When her preschool friends asked her why she takes pills when she eats, she said, "I have sixty-five roses, so my tummy needs help," and went back to her snack. That's it. That's the whole explanation. I've never done it better.

Kindergarten!

Our big news this fall: Kristen started kindergarten the last week of August! She has a purple backpack, light-up shoes and very strong opinions about where her name tag goes.

I won't lie, I was a nervous wreck about it all summer. Here's what we did, in case it helps another CF parent getting ready for school:

	We met with the teacher and the school nurse in August, before school started, with a letter from our CF clinic. Mrs. Heath, her teacher, had never had a student with CF. She took notes on everything and asked great questions. I liked her immediately.
	Enzymes at school. The bottle stays in the classroom with a note from the doctor, and Mrs. Heath gives her the enzymes right before snack. Kristen reminds her anyway. Kristen would remind the President.
	Her own water bottle on her desk and permission to go to the bathroom or the drinking fountain whenever she needs to, no asking.
	Hand-washing for the whole class. Mrs. Heath made a song out of it. Now every kid in Room 4 washes before snack, which the other parents tell me has been great for everybody.
	A heads-up when something's going around. The nurse lets us know if there's flu or chickenpox in the class.
	Coughing is okay. We asked that nobody ever tell her to stop coughing or send her out for it. Coughing is how she clears her lungs. It's a good thing! A couple of her new friends, Jacob and Adrian, now announce "good one, Kristen!" when she gets a big one out.
	No sitting out. She doesn't need to skip recess or P.E. She needs MORE running, not less.

Her report after the first day: "We have a hamster. His name is Peanut. I didn't cry. Can I have a snack?" (With enzymes, sweetheart.)

Matt's Corner: Being a Carrier Dad

Gwen does most of the writing around here, because she's better at it, but she said I had to do a part. So here it is.

When the doctor at the clinic drew that little chart with the four boxes, the one that shows how two carriers can have a kid with CF, I looked at it and all I could think was: I gave her this. Half of it, anyway. I carried that gene around for twenty-eight years without knowing it, and then I handed it to my daughter.

I carried that feeling around for a long time too. I didn't talk about it. I drive a route all day, and that's a lot of time alone in a truck with your own head.

What finally helped was the genetic counselor at the clinic. She told me that carriers are just people, that a whole lot of people carry a CF gene and never know it, and that nobody chooses what genes they pass on. Nobody did anything wrong. Not me, not Gwen. She said that the guilt is really common in parents, especially dads, and that it doesn't help the kid one bit. That last part got me. Kristen doesn't need a dad who feels guilty. She needs a dad who does the evening vest and reads the Berenstain Bears loud enough to hear over it. That one I can do.

When we were thinking about having another baby, Gwen and I had some long talks. One in four every time. We decided we'd love whoever showed up, and Levi showed up. He doesn't have CF. If he had, we'd have loved him exactly the same, and we'd have had two sets of nebulizer cups to boil.

To the other dads: talk to somebody. Your wife, your pastor, the clinic social worker, another CF dad. Don't just drive around with it. I did that for a year and it didn't get me anywhere.

-- Matt

Hope

When Kristen was diagnosed, Pulmozyme was just coming out. Since then there's been more, and every time we go to clinic the doctor seems to have heard about something else being studied. Scientists are working on ways to fix the problem at the gene itself. We believe with our whole hearts that research is going to change Kristen's life, and we want to help it get there faster. That's why we walk.

Places We Trust

Your own CF care center. Start there, always. The doctors, nurses, dietitians and social workers who know your child.

The Cystic Fibrosis Foundation. The national group that funds CF research and supports the care centers. They have information for newly diagnosed families, and local chapters that run events like Great Strides. Our chapter has been wonderful to us.

Our Great Strides page · our family team at the walk this May, with Kristen's own report!