Kare carries Brycen and his stroller down a set of steps as they make their way on foot to a doctorÕs appointment for Bryan. must drive the family car to work early each morning, leaving Kare to plan around the midday heat as she runs errands around town pushing Brycen along in the stroller.Aside from Apert syndrome, Brycen also has a cleft palate, severe respiratory problems and holes in the valves of his heart. In addition to regular scheduled trips to the doctor and countless emergency room visits, Bycen has been taken by helicopter to ChildrenÕs Hospital in St. Louis, Mo., for treatment three times since birth and has been hospitalized with pneumonia and respiratory syncytial virus six times. He faces at least seven surgeries before age 14, and most need to be done before he turns 5.8-month old Bryson rests in the arms of his father Bryan, just days after another serious bout with pneumonia. Both Bryan and Kare were 21 when Brycen was born, and were told by some they were to young to care for a child with special needs. Some suggested they give Brycen up for adoption. They would have none of it. ÒWeÕre doing our damnedest to do it ourselves,Ó Bryan said. ÒThatÕs OUR baby, and I think weÕre doing a heck of a jobÉa heck of a job. We love him and weÕll be there for him forever.ÓFour-year-old Quintez helps his brother Brycen with his bottle in the backseat of the family car, as Kare drives around town asking area business owners for help with an upcoming benefit to assist with BrycenÕs mounting medical expenses. The family is struggling to keep their used car after it was nearly repossessed when they couldnÕt afford to make the payments.As Bryan eats dinner after returning home from work, he and Kare discuss financial concerns, while Brycen sits on his motherÕs lap. ÒWe spend a lot of time talking about who we owe and who we can afford to pay today,Ó Bryan said. Though Bryan works full-time, medical expenses related to BrycenÕs care for Apert syndrome have strained the coupleÕs ability to keep up with their bills.
In the living room at his home, Brycen inhales a fine mist of medication from a tube. His mother is administering one of six daily nebulizer treatments to help battle the constant upper-respiratory infections he suffers from. Apert syndrome affects about one in every 100,000 babies. A child with the condition has a premature fusion of the plates in the skull, restricting brain growth and causing increased pressure in the brain as it grows. The head appears larger than other children’s and the midface appears sunken. Apert’s children also have fused fingers and toes, which can be corrected with surgery.
After a typical day of household chores, caring for Brycen and cooking dinner for her family, Kare gives Brycen his nightly bath. ÒItÕs getting really stressful,Ó Kare says. ÒItÕs hard at times even coming up with diaper money. But I believe in the Lord and felt that He gives special babies to special people, and He wonÕt give you what you canÕt handle.Ó
Kare prays at the Crossing Church in Quincy, where she was invited by a friend to speak about Brycen to the church’s women’s Bible study group. “The first time I saw Brycen there in the hospital on the day he was born,” Kare said to the group of women, “It was scary how he looked. But in minutes God changed my eyes and all I could see was beauty.”
Kara brings Brycen to a local daycare to ask about placing flyers there detailing information about an upcoming auction benefit to help defray BrycenÕs medical expenses.
Kare and Bryan spend time cuddling with Brycen in their bedroom before they turn in for the night. Both parents often comment on how wonderful Brycen is, and how much he has enriched their lives.
With Quintez and Brycen in tow, Kare returns to their small efficiency apartment after walking to various places across town doing errands. Although the young family is struggling, Kare and Bryan are putting their faith in God Ð and each other Ð to handle whatever comes their way. They know that the road ahead is a long one.
