I really don’t want every “Pour Your Heart Out” post to be about Cystic Fibrosis. I really don’t want any posts to be about it at all. This is not a blog about it. It is about my life, though and as much as I hate it, CF is a part of my life and it is something that breaks my heart continuously so it finds its way in here.
I mentioned yesterday that I had Nico’s conferences and I think I screwed up. His teachers had no idea that he had CF. That he battled anything. He was just Nico to them. He was a good student. He was a social student. He participated in class. He was a football player. He was a kid that sometimes coughed or needed to use the bathroom. That’s it. And then I screwed it all up. I told them.
I told them because he was embarrassed by his cough so I wanted them to know he wasn’t sick or contagious. I told them because sometimes he might have to leave class and be gone for what is a normal amount of time so I wanted them to know he wasn’t goofing around or abusing that time. I told them because enough time had passed by so that they know him and won’t judge him because of the hand he was dealt and it isn’t a secret.
Judging by their reactions, I think I was wrong. I hate being wrong. I especially hate being wrong about this stuff. The first teacher, the science teacher, went all technical on me. She knows what the worst case scenario of the disease is and was very black and white about it. “Do the coaches know? How is he affected? Treatments, meds? We do a unit on genetics and CF is part of it. Leave him in or have him leave?” Ugghh…I just want him to be able to use the bathroom when he needs to. She was very, very understanding and nice about the whole thing but immediately, I wanted to take it back. Too much…too much.
His social studies teacher is a huge, linebacker-sized, older man with a deep, booming voice. We talked briefly about Nico’s performance in his class, talked a little bit about football and then I shared with him that Nico battles CF. I was NOT ready for his reaction. He got emotional. Quiet and emotional. He just kept saying, “I had no idea” and “Wow” and “Thank you for trusting me with this information.”
His math teacher is young and enthusiastic and talks really fast. I liked her immediately. When I told her, she was just shocked. She sat there with her mouth open at first and then said she did notice that he was tired a few of the classes and she wondered if something was wrong. She was glad I told her and said, “I would have never known.” I love when people say that. Just love it because it makes me think that the fears that I had that the boys wouldn’t lead a “normal” life are not coming true. This time, however, I got a sinking feeling.
Should I not have said anything? Maybe I was wrong to tell them.
I overanalyzed what I said to each of them. I said the same thing I always say, “He’s healthy and the same kid you know him to be. It just takes some effort to keep him healthy. He doesn’t use it as a crutch and doesn’t want any special treatment.”
I struggled on the way home because it was like reliving the first time I heard he had it. And then I thought again, “Maybe I should just have kept quiet.” “Did I screw up the chance for him to be like everyone else by telling his teachers that he is different?” “What did I do?”
When I got home, I told Nico and he wasn’t that thrilled that I told his teachers. He wasn’t mad but he asked why I did. I told him and the subject was dropped. Until…
He asked, “Are they going to treat me different now? I hate that.” God, I hope not (yes, as the email queen, I sent one out asking that they don’t).
Leo wasn’t that thrilled that I did either. He just said, “You probably didn’t need to tell them.”
So I was wrong. I hate being wrong.
Another sleepless night wondering.
Thanks, Shell for giving me the space to vent: