In the Shadow of CF
A.J. is a tower crane operator who finishes his job each day, a job that perches him hundreds of feet above a sprawling city construction site, to jump on a motorcycle and speed home to his wife and three children. The 30-year-old is used to speed. He spends whatever free time he has riding motorcycles.
His father, Allen, is also a crane operator who hangs up his hard hat at the end of the day and hops on a motorcycle to race home. If you're looking for Allen on the weekends, you'll often find him with A.J., zipping around a motorcycle racetrack or laying open the engine on a stretch of scenic highway.
These two men have more than blood, cranes and bikes in common, however. They both play friend and mentor to 26-year-old Brett, A.J.'s brother. Brett walks in the footsteps of his dad and older brother every day that he climbs his own tower crane; sometimes he's even able to see his brother or his father's tower across the city they all call home. And on weekends? You guessed it. Spent on a bike, usually sandwiched between the two men he admires most. Brett, who was diagnosed with cystic fibrosis as an infant, offers his own kind of inspiration to those who love him.
“When he experiences the scary parts of going into the hospital, it's a reality check for all of us,” says A.J. “It's like a ticking clock, so you've got to enjoy the time you've got here.”
A.J., thankful for the remarkable advances made in the treatment of CF over the last two decades, grew up seeing CF as just a natural part of his family's day. Mornings meant breakfast and Brett's treatments. Nothing more. Nothing less.
“We never felt jealous of the extra attention he was getting. It's just what it was,” remembers A.J. “It's just what we knew.”
A.J.'s feelings reflect the findings of research regarding the siblings of children with disabilities. Recent studies1 indicate that many of the brothers and sisters of children with disabilities grow up with higher levels of empathy, strong tendencies toward helpfulness, and an increased sense of responsibility and maturity.
A.J., who is raising two boys and a girl just like his parents did, without CF, says that knowing and loving Brett continues to pepper his life with unexpected gifts.
“I feel lucky as a parent that my kids were born healthy, says A.J. “I think I appreciate that more than somebody who may not have had the experience of growing up with someone with a disability.”
While the thought of losing his brother haunts A.J., he doesn't dwell on it. Brett won't let him.
A.J. says that Brett does not let this disease slow him down. His whole thing is, 'Don't feel sorry for me.' Because he's been so strong with it, he's helped me. It's just something you do. A lot of other siblings must feel the same way.”
- 1 Mandeleco, B., Frost Olsen, S, Dyches, T. & Marshall, E., (2003). The relationship between family and sibling functioning in families raising a child with a disability. Journal of Family Nursing 9 (4), 365-396. Retreived on April 2, 2008, http://jfn.sagepub.com/cgi/content/abstract/9/4/365.