Thursday night hockey last week went ok. Despite the fact Hunter got sick, we really got to know his coach. His coach wanted to know a little bit more about the kids. We told him that both of them have CF. He looks at us like "What's that?". I thought, let me tell you. Started to explain to him what CF does, that no one on either side of Brandons nor my side of the family has ever had this disease. Went into depth about medications, hospital stays, etc.
He looks me in the eyes and tells me that by looking at them, you can't tell. They are running and playing around as we are talking. I look over at my kids and I tell him, you can't tell but it is very indeed there.
I work my butt off to keep these kids healthy and to keep them in shape. Went into telling him our daily routines, the time consuming treatments to keep the mucous that they have a hard time getting up, from sticking to their lungs. It was a great opportunity to inform and get another person to become aware of this disease.
Come to find out, their coach who is only 25, has Crohn's Disease and Rheumotoid Arthritis. He went into how he was diagnosed at 18 years old and has to take medications himself to help him with his digestion. Different diseases, but a lot in common. He went on to tell us how he takes 9-10 meds a day for his conditions.
He understands in a way. No one can completely understand CF though unless they are going through it themself or taking care of someone with it.
He almost wanted to go easier on them because of him knowing now. I told him "No". They need to be worked, they need the discipline with hockey and listening to him. Don't go easy on them just because they have CF. They are like any other child and I don't want them to be treated any differently. Maybe more water breaks but they need the excercise to keep their lungs working strong.
My kiddos may have CF...but you know what? They are as human as any other person without it. Never, ever, judge someone by their looks. You never know what THEIR story is.
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