Joy for Today
(Left to right) Caleb, Rachel, Tiffany, Megan, Paul, Nathan, and Shiloh (photos by Melissa Pennington Photography)
Step into their Omaha home and you’d think the Leaders’ life is like any other. Paul and Tiffany are parents to five kids, ranging from seventeen to six years old. Paul works as a police officer for the Omaha Police Department, while Tiffany is a stay-at-home mom who homeschools the kids: Nathan, Caleb, Rachel, Shiloh, and Megan. Their home is warm and friendly, a place where you sense that each person in the family is happy to be with each other. Dig a little deeper and you’d discover that their life is far from ordinary.
The Leaders’ story started many years ago when Paul was working as a teacher in China. On a break from school, Paul had returned to Omaha, which is when he met Tiffany, a second-grade teacher, at Christ Community Church. After dating for a month in person, they dated long-distance for a year. During that time, he and Tiffany wrote over 100 letters to each other. Paul and Tiffany married after he returned from working overseas. They both wanted to have a large family, and they also felt a pull to international missions. The two planned on having a few children and then moving overseas to work as missionaries. They also felt that perhaps adoption was in their family’s future. Their oldest Nathan was born, followed by Caleb a year later. Life seemed very normal. And then their daughter Rachel was born.
At birth, Rachel didn’t look healthy. Her skin was yellow. She had trouble breathing. Rachel was very, very sick. At four hours old, Rachel was being prepped for emergency surgery for a blockage in her intestines. The doctor’s exact words were, “She might not survive the surgery!” The surgery was very difficult and the doctor was not sure how damaged her intestines were. If too much of the intestines were dead, Rachel would not be viable, despite the surgery. Tiffany shared there were several times where they almost lost her. When Rachel was only ten days old, Tiffany received an urgent phone call from the doctor, telling her to return to the hospital. Tears streaming down her face, she drove down Dodge Street. The doctor delivered the news: Rachel had cystic fibrosis.
Tiffany called Paul to tell him. At that moment, Paul sensed the Holy Spirit tell him that their family would not be going overseas to serve in China. The following day, Rachel experienced pulmonary heart failure and her lung collapsed.
Cystic fibrosis (CF) is a genetic disorder that affects the lungs, but it also affects other organs including the pancreas, liver, kidneys, and intestines. A person with CF has difficulty breathing due to increased mucus production, which is thicker than the mucus of someone without the disorder. They experience frequent lung infections, as their bodies have a harder time fighting off bacteria, including bacteria that only affect people with cystic fibrosis. Those who have CF have a shorter lifespan than those without. And because a person with cystic fibrosis is more susceptible to illness, they must avoid people with colds and coughs, as well as others with the same disease. Even the family members of someone with CF must be careful to not shake hands with or hug people who are visibly sick—coughing, sneezing, blowing their nose.
Cystic fibrosis is a disease that is very socially isolating. Though there are treatments and new medicines being developed, there is currently no known cure.
Rachel spent six weeks of her first year in the neonatal intensive care unit (NICU). While Rachel was there, the baby of a couple who attended Paul and Tiffany’s Sunday school class was a patient in the same NICU. The two families shared their grief and prayed together. Rachel was finally released from the hospital. Paul and Tiffany brought her home, along with bags of nebulizer treatments and other supplies to keep Rachel alive. The supplies filled their living room. It was overwhelming. Yet on that day, the other family was burying their child. As Paul and Tiffany grieved for the other family, they also offered up this prayer: “OK Lord, whatever road you give us, we’ll take a hard road over no road.”
Though the Leaders weren’t able to move overseas because of Rachel’s disorder, they still desired to adopt. God brought two daughters to their family, Shiloh and Megan.
Today, Rachel is a teenager. Life with cystic fibrosis is challenging, and Rachel’s life looks different than the life of a teen without CF. Rachel’s day is filled with different treatments to manage the disorder. Consistency in treatment is key to maintaining better health for her. When she wakes up, she starts a feeding tube, which is a tube connected to a port that goes through her belly and into her stomach. Because CF doesn’t allow the body to absorb nutrients as well as it should, Rachel used to be malnourished. The feeding tube helped Rachel gain weight when she needed it. Now, it continues to provide the additional nutrition she needs. Afterward, Rachel begins breathing treatments, which can take up to two hours a day when she is well, and up to four hours a day when she is sick. These treatments often cause her to miss out on normal life, such as playing with siblings. Multiple times throughout the day, Rachel stops what she’s doing to take her medication. She currently has eighteen different medications that she must take every day. Preparing her medications take her and her parents about thirty minutes each week. Rachel has frequent doctor’s appointments with a variety of specialists. The medical challenges she faces are significant, but there are also social and mental challenges that come with the disorder. Not only must she avoid people who have coughs or colds, she also must avoid others with cystic fibrosis. While it would be wonderful for her to have friendships with others who have the same disorder and experience the same struggles, the bacteria of another person who has CF could make her very sick, and her bacteria could make someone else with CF very sick.
Despite this extremely difficult illness, Paul and Tiffany have taught their kids to trust and rejoice in the Lord. Paul shared, “We’ve definitely been blessed by the Lord through all this. Even in the tough times, we still praise him.” The Leaders have had many tough times when it’s hard to be grateful and actually mean it, yet they still choose gratitude. They choose to thank God for the hard things, like the eighteen medications, because without them, Rachel wouldn’t be here. They thank the Lord for the stomach problems Rachel experiences, because it means that her body is working. Even when Rachel was hospitalized last fall for treatment for a bacteria she had—the bacteria that causes the most damage to the lungs of a person with cystic fibrosis—they chose to thank God. While those with CF are typically hospitalized two to three times per year, this hospitalization was Rachel’s first since she was an infant. This was also an opportunity to share the love of Jesus at the hospital. Paul shared that the respiratory therapists loved coming into Rachel’s hospital room because of all of the cards and all the people who were visiting. They were able to see and feel the love and presence of Jesus through how the Leaders reacted to the situation and through the visitors.
Rachel sometimes feels anxious about getting sick or not meeting others’ expectations for her life. When she feels that anxiety, she’s reminded of her favorite verse, Matthew 6:34, which says, “Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.” She also has discovered encouragement and support in her small group at CCC. She shared that she can easily talk about CF with the girls in her group. While she was hospitalized, many of the girls sent cards to her.
As the Leaders family looks toward the future, they know life is uncertain. Tiffany shared that Rachel is just one cold away from becoming really sick. Yet the family looks to the future with hope—a hope that is placed firmly in Jesus. They trust God will use Rachel’s life to encourage others with the illness. While new medicines are being developed for the treatment of cystic fibrosis, they know to place their trust in God, whether that’s for today or for the future. They trust that God will guide them well, because he has never let them down.
Rachel Bebee is the Project Coordinator for the Creative/Communications Team at Christ Community Church