Azer recently got a letter from a CF Organization that provides grants towards recreational activities. They had a set of questions that they sent along to be answered by the CF child. I think some of the questions applied to older children, but I asked him in a way he would understand.
Some of the questions were kind of touchy, such as, "Do you feel you are too thin, do you feel you are too short, do you feel you are physically different from others?" It gave me a look into how he feels about having CF, especially now that he is around other children his age, besides his sister.
He felt like he had to stop doing things he enjoys to do treatments, and he feels pressured at meals to eat.
He gave me an answer to one question that I did not expect. The question was if he enjoys eating. And he said no, not at all. He said he only enjoys the taste of food, but not the actual eating experience.
Another question was answered unexpectedly. The question was if he had trouble breathing. He said not usually, but he said he was worried about the cold weather coming. He said he has a difficult time breathing outside during cold weather, and that he was worried he wouldn't be able to run around with other kids during recess in the next few months.
While I am not one to let pity take over the situation, I feel a bit taken back by how he feels CF is affecting him.
If anyone is interested in applying for the recreational grant, it is called the Cystic Fibrosis Lifestyle Foundation. Their email address is: firstname.lastname@example.org