What It's Like to Be a Mom When You Have an Incurable Disease "I want to be here for my son as long as I possibly can." Ian Pettigrew

Imagine having a cough that never, ever goes away. Imagine having so much trouble breathing that you need to be rushed to the hospital—and not knowing when this could suddenly happen to you. Imagine being rail-thin, even though you consume close to 5,000 calories a day. Imagine knowing you probably won’t live much past your 40th birthday.

That’s just the tip of the iceberg of what someone with cystic fibrosis, a life-threatening genetic disease that affects the lungs and digestive system, has to deal with on a day-to-day basis. While quality of care has improved dramatically over the years, the average life expectancy is still only early forties, according to the Cystic Fibrosis Foundation. Gretchen Boerner, a 28-year-old in Lexington, Ohio, is one of the estimated 30,000 people in the U.S. who has cystic fibrosis.

Every day she spends three to four hours doing breathing treatments, one of which includes wearing a vest machine to help clear the mucus in her lungs. And every night, Gretchen, who is 5'7" and 107 pounds, hooks up her G-tube, which is inserted in her abdomen, to ensure she gets an extra 1,500 to 2,000 calories (she's supposed to get close to 5,000 a day since people with cystic fibrosis can't digest food properly). Gretchen is on disability because she's too sick to work full time, although she does babysit occasionally to earn extra money. Despite all of this, Gretchen has an amazingly positive attitude and a strong support system made up of her extended family, her 6-year-old son, Brighton, and the women she met while participating in the Salty Girls project, a photo series taken by Ian Pettigrew.

RELATED: This Photo Project Shows What Living with Cystic Fibrosis Really Looks Like 

Here, Gretchen shares the sweet way her son cares for her, the difficulties she's had dating, and how cystic fibrosis has changed her outlook on life.

Ian Pettigrew

The Challenges of Being a Mom When You Have Cystic Fibrosis—but Why It’s the Best Thing Ever
When Gretchen was 20, she approached one of her doctors about whether or not she'd ever be able to get pregnant. "I had been in the hospital—at that point I was the sickest I had ever been—and I remember asking my doctor about it then," says Gretchen. "She said, 'Oh no, there’s no way your body could even get pregnant right now, you’re too sick.'" Gretchen did end up getting pregnant a month and a half after that conversation, though, and although she developed gestational diabetes, she says she felt at her healthiest for those nine months.  

While being a parent is stressful for anyone, having a chronic illness makes it even more difficult, especially since Gretchen usually ends up in the hospital for a two-week stay at least once a year. “Most of the time, when I get sick and need to be in the hospital or I need to just take a few days at home to not do anything, the most upset I get is not over the fact that I’m sick, it’s over the fact that I can’t be there with my son,” says Gretchen. Luckily, her family is always there to step in and help take care of him whenever Gretchen's too sick to do so on her own. 

Brighton's father wasn't a part of his life until recently. "When I found out I was pregnant, he left and wasn’t there through any of the pregnancy," says Gretchen. "He didn’t get involved in my son’s life until about a year ago." But Gretchen never wavered in her decision to have her child. "The whole time I was pregnant, I never thought: 'Oh, man, am I doing the right thing because I don’t know if I can be there for him?'" she says. "That never really crossed my mind until after I had him—and not until he was probably a year and a half or 2 years old. I was really sick for three years in a row, [and] it was just one thing after the other. I don’t know if guilt is really the right word, but I just kind of feel bad—because of course I want to be here for him, I want to see him grow up. But I would never change having him." 

Right now, Gretchen says her son is too young to know exactly what’s going on. “All he really knows at this point is mommy’s lungs are not as good as everyone else’s,” she says. “I haven’t talked in front of him—and my family doesn’t talk in front of him—about me possibly dying.”

RELATED: 17 Things No One Ever Tells You About Being Pregnant

Gretchen, whose lung function is normally between 37 to 40 percent, knows that there will come a time when she'll need to consider a lung transplant (most doctors start recommending one when lung function drops below 30 percent). There are risks involved, including having the body reject the new set of lungs. And the life expectancy post-procedure is currently five years, but it'll be worth it for her if that means she gets more time with her son. "If and when that time comes—which I know it will someday—I will more than likely have the transplant because I want to be here for my son as long as I possibly can," she says. "But if I have a transplant and I go through all that and I only live for another year or two, I will be very pissed." 

It’s obvious how much Brighton cares about her. “He always wakes me up in the morning and says, 'Mommy, come on, go do your treatments,’” she says. “Every once in a while, he’ll crawl into bed with me in the middle of the night, and if he hears me cough, he instinctively rolls over and pats my back. It’s cute.” And while Gretchen knows she may not always be around for her son, "The amount of love that I will be able to give to my child regardless of how long I’m able to do it is better than not have having had it at all," she says. "I feel like, if you can experience the level that I am able to love for a short amount of time, that’s better than having a parent who loves you just a little for many years."

Ian Pettigrew

What It’s Like to Date When You Have a Chronic Illness
Gretchen has been in a very happy relationship for the last eight months with someone she was set up with through mutual friends of theirs. “My boyfriend right now—I feel so lucky and so blessed to have found him because he knew about everything from the beginning and he’s never questioned it,” she says. They've talked about their future: Marriage is most likely in the cards, and both of them love kids. However, Gretchen's lungs are not in good enough shape for her to be able to carry another child. "If I could have as many kids as I wanted, I would have five or six because that’s what I was put here to do," she says. "I love being a mom." The couple has talked about other options. "He loves kids as much as I do," she says. "It’s something that we would definitely want together—we daydream about it all the time. But we would probably have to go the surrogacy route and have somebody else carry it for us." 

Although she's in a loving relationship now, not every guy has been as understanding. “At least a handful of guys I’ve dated, as soon as they found out about cystic fibrosis, they walked away,” says Gretchen. “It’s not something everybody can handle. I know I can speak for most of the Salty Girls when I say this: Not everyone is able to handle this. And we know that. But it doesn’t make it easier.”

She describes it like this: “I always like to joke about it, but it’s quite seriously, really,” she says. “My match.com profile would say: ‘I’m not going to be able to work, I’m not going to be able to have children with you, I’m going to need you to support me and my child and also deal with the fact that I’m probably going to die before you.’ It’s a complicated resume.”

Ian Pettigrew

Why Gretchen Views Life Differently Than Other People Her Age
In the 1950s, kids who had cystic fibrosis weren’t even expected to live long enough to go to elementary school. When Gretchen was growing up (she was born in 1986), she had a timeline mentality. “I think my generation of CFers is different from the people being born today with cystic fibrosis,” she says. “They’re going to live full lives, I have no doubt, with all the medical advancements. Buy my generation, we were told we weren’t going to live. At first [the life expectancy] was 8 [years old], then it was 10, then it was 15, then it was 20. It was almost like an expiration date.”

RELATED: What It’s Like to Survive a Deadly Disease

This feeling made Gretchen grow up emotionally much faster than others her age. “I grew up so much sooner than all my peers,” she says. “I knew what I wanted out of life when I was 15. That affected my friendships and relationships. I didn’t see the point in anyone wasting my time because, to me, my time is so incredibly precious.”