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Letting the World In Video

Laura

Well I never thought she would be at school. I never I thought I would be home-schooling her didn't think I would ever get to the point of really trusting somebody else to give her enzymes or… you know having her around other kids who were you know… possibly sick, runny noses, coughing things like that.

Laura

I was worried that once she got to school and had to take her enzymes for snacks and other things like that that other kids would make her feel different and they didn't at all they were they were wonderful.

Laura

As my son started going to school and watching him enjoy it and Ellie really wanted to be a part of that I didn't want to deny her that and I guess I… I want her to have a normal life and I want her to experience the same things he gets to do and so she, we do keep it very as normal as possible.

Kristi

I want him to go to college, I want him to find that's going to love him and take care of him, I want him to be able to have children. I just want him to live life to the fullest.

Kristi

This is what they recommend you know don't take them to church within the first couple of years, kind of monitor yourself when you go to the grocery store make sure you are at least 3 feet away from people when you have a newborn everyone just swarms into your child because they want to touch him, they want to pull the blanket down and see if its a boy or girl.

Kristi

I have only had to explain it once at a grocery store when a guy was coming over and I could tell he was ready to cough and I moved the cart out of the way and I said "I'm sorry sir but my son has cystic fibrosis and germs… just are too much for him to handle" and he was almost going to get mad at me because he was like "I just wanted to see the baby"… no … (*laughs*)…

Kristi

His annoying mother that's going to be clapping him, giving him his medication his nebulizers, nagging him constantly did you take your enzymes, might even be that mom that shows up at school to make sure he took his enzymes that's a fear of mine that he is not going to take them when he is at school… a mom that's going to be afraid when he goes away to college… maybe I might have to move to be closer to him, just one of those moms.

Kristi

I have a little sign at my back door because we use our back door the most that says please sanitize your hands when you enter my home. And that's what we expect from everybody.

Kristi

He needs to be a kid, he needs to go outside, and he needs to eat sand in the sandbox he needs to be able to go swimming in the pool. He needs to be able to do everything as a kid or he is not going to grow up hap… you know happy.

DeeDee and Larry

Kyle… is 23 years old and he has never had a lung infection, so he has never he had one week of a hospital stay and that was it. So you know, we never really had to treat him differently because he was so healthy.

DeeDee and Larry

It's been different with Kayla because she's had a lot of the lung infections and stuff and so I think she is sheltered a little bit more as far as being made to go out and work on the farm. We've been increasing that because she needs to learn some responsibilities.

DeeDee and Larry

(DeeDee) But as far as sheltering them we always just treated them as if they were like any other normal kid, we put them in a church nursery we just ya let them do what they wanted to do basically ya… (Larry) we have never sheltered them… (DeeDee) no… from germs or anything…(DeeDee) no… (Larry) no… (DeeDee) I knew we were cautious but we just didn't want to set them apart from other kids didn't want it to have them be as normal as possible.

Letting the World In:
Parents Define a New "Normal"

Playgrounds, schoolrooms and the homes of little friends are the stomping grounds of childhood. Anywhere children gather, however, germs do as well.

Finding a balance that allows you to say, "yes" to a normal childhood experience, while protecting your child's lungs from infection, is a balancing act every parent of a child with CF performs.

Your CF clinic physicians and social workers will help you decide how and when you open the door to the world outside your home.

As a parent of a child with CF, you undoubtedly feel part cheerleader, part nurse, and part warrior in the fight against germs. Here are some of your best allies when it comes to beating the germs back while still allowing your child the joy of swinging so high her toes touch the sky.

Letting the world in

Everybody loves a baby. People "ooooh" and "aaaah;" they cootchie-cootchie-coo; they zoom right in for an extreme close-up of your little one until you're ready to crawl out of your skin worrying about dirty hands and germ-laden breath.

You can make loving your baby less stressful, and less dangerous to your child's health, with a few tips from the experts:

• Develop a routine for all visitors to your home that includes hand washing and hand sanitizing.
• Hang a sign by your front door that says, "Welcome to our home. Germs can be dangerous for us. Please wash and sanitize your hands as soon as you arrive."
• Make hand-sanitizing gel available by your front door, in the guest bathroom and next to every sink in the house.
• Keep sanitizing wipes on hand for quick clean ups, especially following a visit by other children.
• Let all of your friends and family know, firmly but with love, that no one can come visiting with a cold or a cough.

Going public

Some parents of newborns with CF, desperate to protect their child's lungs, can't fathom ever sending their son or daughter to daycare, preschool or public school. Leading experts in the field of cystic fibrosis, however, encourage families to develop normalcy in their routine by allowing children to have the same kinds of experiences as other children their age.

Once you open the door and step outside the home, your family's best defense against germs is a good offense: hand washing. The Mayo Clinic encourages using soap and warm water, and scrubbing all parts of the hands for at least 15 seconds, several times a day.

Another tool in the war on germs is alcohol-based hand sanitizer. Keep a small container with you at all times in the event you don't have access to soap and running water. This product is actually more effective at killing germs than a good hand wash.

Common sense tells you to steer clear of people who are sick. One mom of a CF infant remembers an incident in a grocery store when a well-meaning man beelined it toward her baby in one of those cootchie-cootchie-coo moments.

"He was coughing and I said, 'Sir! Please don't come near my baby with that cough. He has CF and it could be dangerous.'" The man was put off by her response, but she didn't care. Her son's health took priority.

School rules

Health concerns may lead you to consider home schooling or a private school instead of public school. Al Lew, a social worker at Children's Hospital in Seattle, says the decision to home school shouldn't be based on having a child with CF.

School may be the first time your child understands that not everyone has to take enzymes with food, use nebulizers to breathe more easily, or has "stinky poop." Social workers in the field of CF encourage parents to discuss these issues with their children and, need be, bring any concerns to the CF clinic. Feeling "different" is not easy for children, but with thoughtful guidance from parents and a child's health care team, the transition to a "new normal" is much easier.

Travel bugs

While some people see airports as exciting gateways to a wide, wide world, parents of children with CF might only see a public place filled with germs, coughing people and travel restrictions that mandate important medication be checked instead of carried on.

Again, let the need for your child to experience life like others be your guide. Laura, who travels with her 4-year-old daughter occasionally, does so with caution.

"I still pre-board the plane. We wipe everything down with sanitary wipes," she admits. "We bring our own toys, food and drinks. If anyone is sitting around us coughing or sneezing, I pull out my CF card and either they move, or we move. And, we don't fly November to March."

As a family touched by CF, you may feel as if you are already traveling in another world at times. You are not alone. The more you can integrate everyday experiences into your family's world, however, the easier it will be to teach your children - and yourself - that CF is just one part of your life. It may change how you live, but it doesn't have to rob you of the richness that life has to offer.