Was I Wrong?

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:

 

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Comments

  1. Wow, this is a tough one. I don’t know what to tell you. Except it’s done, and you can’t turn back time, so it’s best to not dwell too much on the fact that well, it’s done. Don’t beat yourself up over it, you were just looking out for Nico. I’m sure he understands that.
    Alison recently posted..Intrinsic GoodnessMy Profile

    • Too late on the “beating” myself over it. I wish I was better at not dwelling on things or moving on from “what’s done is done” but I’m not good at either.

  2. It’s done. It’s out there. Don’t let it get to you now or beat yourself up for it. I completely understand why you told them, but I also know where your questionning is coming from. It’s okay, and it will continue to be okay. Promise.
    Kimberly recently posted..Essence of Now: Rainy Day BlahsMy Profile

  3. Oh girl, I’m not really sure there was a right answer here?

    You did what your mothering heart told you was right – and I say we trust that.

    {I’m right behind you, sending you what I’ve got}
    Galit Breen recently posted..The 17 Day Diet: ExerciseMy Profile

  4. Personally, I am not sure how you don’t share that information so that they understand the ‘why’ behind needing the hall pass. As a former HS teacher, I would have assumed he was goofing off in the hall or going to see a girl somewhere in the building. By being upfront you allow the ‘adult’ teachers to see the whole picture and he avoids unfair treatment down the line. CF is part of him and your family’s life. I applaud you for ALL of your efforts and his efforts of keeping it from defining you. However, it is a great balancing act. Good Luck, HS years are tough for every kid.

    This comment brought to you by a mom who won’t have a choice about talking about her child’s extra chromosome because everyone will already know.

    Cindy–loving life with Down syndrome!
    Cindy recently posted..Terra FirmaMy Profile

    • I know what you are saying and that is exactly why I said something. I didn’t want them to think he was goofing around. Thanks for the comment and the kind words. It is a balancing act and this week, it felt a little tipped to one side.

  5. I TOTALLY disagree Annmarie!! I believe it was the RIGHT thing to do!!! You are responsible for Nico’s health and education to be smooth and successful, right? Knowledge of CF doesn’t do anything but help him in this path in that if (God forbid) something would happen in class or out of class, and he needed to leave or missed school…the teachers now have an understanding behind it! To me, it is also a safety issue. What if (god forbid!) something would happen and Nico needed immediate help? If the teachers did not know about this, they would be helpLESS. Yes, Nico is appearing healthy and strong… but for the teacher to have this knowledge…is critical to them educating your son! I feel like it should be in the law somewhere that this kind of information needs to be given. You know what it’s like to teach…don’t you think you would really want to know this about your student?? Oh please don’t fret! I want to yell from the mountain top: “YOU DID THE RIGHT THING!!!!!”
    Chris Carter recently posted..Better Dreams…My Profile

    • We haven’t had the best luck in teachers knowing. I talked about it in this post: http://tidbitsqueenchaos.com/2011/03/angry-week-school-rant-part-2-long.html

      It’s been scary so far letting teachers know. With Nico and Tommy, battling CF is more of a gradual thing. It isn’t like it comes on suddenly or is a big surprise. I know this because when Tommy was in the hospital, a kid coded in the next room and the nurse thought I’d be comforted by saying, “Kids with CF don’t die that way.”

      For the record, I am glad it isn’t a law and that they still leave it up to us to tell. :) Having CF is not a choice but who knows should still be.

      As always, thank you for your support, my friend. :)

  6. I,too,believe it was the right thing to do. Will try to keep this short but I wish that 8 years ago,I would have been given the chance to talk to my daughter’s classmates. She had been homeschooled for 8 years. A series of events led us to enroll her in a small Christian school. Too make a long story short,shortly before started school,she was diagnosed with OCD. Starting school in the emotional shape she was in, was tough, tough!!! We were assured the kids,even though some had been there since kdg.,would accept her. Well, it didn’t happen,all they saw was a girl who was a new freshman in their 15 member class and she was an emotional wreck. I offered to talk to her classmates and explain what was going on with her. They didn’t want me to do that,they didn’t want to label her. Well, it was too late,she was already labeled as an outcast. Sad to say,it continued through the 4 years,she was never really accepted. My mistake-never should have left her in that school.
    She has recovered to the point of graduating from college and is engaged to be married in the spring to a young man who knows and accepts her as she is. So THAT was my big mistake!

    • Ugghhh…that is awful! I’m so sorry your daughter had to deal with that. It’s so difficult as parents to know if we are doing the right thing. I’m happy to hear that your daughter is happy now! Thank you for sharing that. :) It makes me feel better that I said something.

  7. I’m sure it didn’t feel like the wrong thing at the time. When we have information about our kids that we feel would make their lives easier if someone knew, we tend to share. But you couldn’t have known how his teachers would react. It’s hard because obviously you don’t want to prejudice them either way. Just know that you did what you thought was best for Nico. You’re a great Mama – don’t doubt that for a minute.
    Kathy at kissing the frog recently posted..Thank Goodness for CutenessMy Profile

  8. {Melinda} I can only tell you what I do with Micah. I always tell his teachers that he has it. I’m very matter-of-fact about it and what his needs are (bathroom breaks, enzymes, etc.) I always tell them he is doing great and is a fabulous student. I just want them to be aware of his condition in case there are times he is struggling, coughing, etc.

    It is a tough call. I will tell you that I generally don’t tell anyone who doesn’t “need” to know. There have been people who have known our family casually for years that don’t know. Or find out and are very surprised (I love that, too.) I want him to just be Micah. And if he wants to share it with people he knows that is fine. But I leave it to him. I’ve always seen the teacher thing a bit differently, though … since it helps them have the whole picture of what might be going on with him in the classroom.

    So, I guess I’m saying don’t be hard on yourself. You were doing what you felt was best for Nico. You’re a great mama.
    Mothering From Scratch recently posted..Messy kids? Get their attention creatively.My Profile

    • This was my train of thought when I told them. I have stopped beating myself up about it. When the one teacher admitted she didn’t let him go to the bathroom, I knew I did the right thing.

  9. I don’t think you were wrong in telling them. Seems like it was info they should know, just to make sure that they understand.

    I feel about autism the way you feel about CF- I’m not an autism blog and I don’t want every post to be about it- but I can’t help it, it’s such a big part of our life.
    Shell recently posted..Things They Can’t Say: Raising HumansMy Profile

  10. I understand where you are coming from in wanting him to be treated as himself and not as a child with a disease, but as a teacher I would want to know what is going on with my students just so I know what to look for, just in case. I think you were right in telling his teachers.
    It’s so difficult being a parent. There’s never a definite ‘right’ or ‘wrong’ answer.
    Erin recently posted..She’s Simply AmazingMy Profile

    • It’s funny, as a teacher, I would definitely want to know. As a mom, I know all teachers aren’t like you and me. We would never tell a kid that “your mom is stressed because she doesn’t know how long you have to live.” We would never say, “You think because you have this, it means you can talk and disrupt class, it doesn’t.” That’s why it was so tough for me to tell them. After both of those, I seriously considered homeschooling but then know that if I did, one of us wouldn’t survive. :)

      • I am so shocked! {Those words don’t sound strong enough, but I’m not sure what else to use}. How can anyone, especially someone with children or who works with children even think to say something like that?! I am so pissed off for you! I do not know if I would have been able to keep my cool and hear those words. And then on the flip side of it, have they even tried to consider how you feel or how the boys feel? I mean seriously, I don’t even know how you keep it together as well as you do {I hope I’m not adding to your stress. I mean that as a complement.} GRR some people are such JERKS! I’m so sorry for you and the boys. That’s just B.S.! {I’m going to stop there because I think some really not nice words may be coming next :)}

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