How to Find Hope

Recently, a colleague approached me and said, "Do you mind if I ask you something personal?"

"Not at all," I replied with a puzzled tone.

"Well, a friend of mine just adopted a two-year-old boy with Cystic Fibrosis. What sort of things does she have to look forward to, and what kind of things should she be doing?"

Hours of conversation and years of experiences flashed through my mind, but I knew why my colleague was asking me this question, and I knew what answers she needed to hear. I could have said that there may be bouts of hospitalization. I could have said that there will be times when all she can do is cry. I could have said that there will be hours of insurance calls. But I didn't. Those are things that come with the territory of any illness that must be "dealt" with. What this friend of a young parent needed was hope.

"There are plenty of things she can do now to ensure a happy child down the road," I replied. Here are some of my suggestions:

1. For the sanity of the family and the future relationships of the child, develop some networks of people in the same situation. Link them to this blog, visit any of the numerous websites I have listed at the bottom of the page, while in the waiting room, make friends with parents of CF children, and get involved with a local foundation. It's really nice to talk to parents who have been through everything already. Raising a CF child on your own is a monumental task that can take its toll on any family. I realize that doctors advise against CF patients mingling, but you cannot exchange colds and bacteria through the cell phone or the Web.
2. Get your child involved with sports and activities. Since the lungs are one of the most important organs for a person with CF, it is vital that they get a ton of exercise from their early years and on. Teach the child that exercise is important for everyone, but necessary for their survival. If you instill this at a young age, you will be less likely to have a resistant couch potato years down the road.
3. From being involved with sports and activities, children develop camaraderie and confidence, which is a key element in teenage survival. Parents want to be protective of their frail child; I understand this, but don't prevent a child from enjoying life because you are afraid that they might get hurt or break. I wish my mom and dad would have let me play football, but they thought that I was too small, so I played baseball instead. Not that I didn't love baseball, but most of my friends were playing peewee football and that created some dissonance between us.
4. Teach your child that they are different. Don't allow them to feel ashamed, but do not force them into the spotlight. Allow the child to develop a confidence about their disorder at their own pace. I didn't want people to know about my CF until I was fifteen years old. While in restaurants, Mom would slyly slide me my enzymes to avoid any curious onlookers. She had the best intentions, but that made it more difficult for me to nonchalantly take my pills when Mom wasn't around.
5. Finally, do not treat your child like they could keel over at any moment. Kids pick up on that type of behavior and begin to live like that. Don't be afraid to encourage and at times push your CF child. Many times I wanted to quit sports because coaches treated me differently, but Mom and Dad would not allow that to happen. I am a better and healthier person today because of their stoic motivation.

"Could I get your contact information and give it to her? I think she would really benefit from talking to someone who is doing so well with Cystic Fibrosis."

"You got a pen?"

~Scott