<P>Jeff, I am so sorry to hear this and I know, I really know, how heartbreaking it is. Our daughter was just diagnosed a few months ago at the age of 13 and a half. She has been hospitalized twice since then.</P>
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<P>She has always been outgoing, bubbly, interested in a lot of activities, and, unlike your son right now, she still is, but we have seen a side of her we never saw before: anger, depression, and hateful outbursts. She is especially angry over having to do the treatments, and she sobs and begs us to allow her to stop. She says she can't, she just can't, do them, and she wants to go back to the way it was, before diagnosis. To her it feels like the treatments and therapies have stolen her whole life, and, worse, have stolen her whole Self.</P>
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<P>I have noticed a pattern with her, though. Every time anything changes in her regimen (like after each clinic visit, hopitalization, or other times when the doctor orders something new), she gets very upset, and there are lots of angry outbursts and tears. She takes a giant step backward on the journey from anger to acceptance. She strikes out at us because she has no one else to attack, to punish, to demand reparations from, for what has been done to her. She has every right to be angry, and to grieve, and to feel cheated, we know. But usually after a big outburst, she begins to move forward. So the first time another treatment is added, she throws a fit. The next time she has to take that treatment, she is pouty and sullen and angry. But by the second or third day, she is noticeably less ugly and antagonistic about it, and between the treatments, we start to see our cheery girl again.</P>
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<P>She sees a child psychologist who works with CF patients--check your closest CF center or ask your pulmonologist to refer you to a therapist with experience with kids who have CF. This has helped her a great deal. The therapist suggested not doing CF stuff first thing in the morning or last thing at night, because our daughter objected to it being the first thing she was faced with every day, and the last thing she was thinking about before she went to bed. Also, we have bent over backwards to find things to distract or entertain her while she is doing therapy. We play board games or card games with her, hand her a sketchpad and other art supplies, or let her watch TV or play on the computer, for example, while she is doing breathing treatments or therapy. She likes to play Twenty Questions during CPT.</P>
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<P>And, against medical advice (they keep telling us we have to teach her to be independent, but we think we have time to do that later on, well before she leaves home for college), we have taken over the cleaning and sterilizing of her equipment. It just seemed like too much is already being asked of her, and we want to reduce the burden as much as possible right now. We will gradually transfer these responsibilities back to her later on.</P>
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<P>I tried to tell her that CF was a wolf we had to feed every day, at certain times, in order to make the wolf go away and leave us alone for several hours. We have blocks of time between treatments that are completely ours and have nothing to do with CF. But in order to keep the wolf from controlling our lives, we have to throw him a bone about four times a day, every day. The wolf does not own us. This analogy has only been marginally successful with her. When she is having fun or actively involved in something, she does not think about CF. When she is having a treatment or doing a therapy, she thinks CF takes up her whole day.</P>
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<P>Pointing out that it could be a whole lot worse (and just walk around the hospital to convince yourself of this) works for me, but it does not seem to help my daughter much. She is so acutely aware that this is not fair, and she lets us know it! But I have had a little success with agreeing that no, it isn't fair, and, yes, she has been totally cheated, but then pointing out that life has also--many, many times--been unfair to her in a good way: she has gotten more than her fair share, more than others got, many times. So I focus on the good things and the happiness that she has experienced, and for some reason she is more responsive to this than she is to pointing out how much worse it can be for others.</P>
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<P>Our daughter would say angrily "I don't care." It took me a while to figure out what that meant. Was it that she didn't care about what I was saying? About getting better? What? Turns out it means "Shut up, I don't care to talk about this or think about this anymore." She does not like to talk about CF, and she does not like being forced to think about it. With such a recent diagnosis, it is almost the only thing I think about, and my husband and I talk about it a lot. Friends and family are always asking, the phone calls are always about CF. I have realized that my daughter does not care to be dragged out of her 13-year-old's world into mine, and she does not want to hear about it anymore, thank you very much. So I try not to talk about it in her presence. My husband and I make sure we are not being overheard. I have told people I won't talk about it on the phone, and have gone to e-mail.</P>
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<P>At this age, your son's and my daughter's main job is to find out who they are, and, specifically, who they are as distinct from their parents. They had personalities, selves, identities, before the diagnosis, and they do not want us going before them like John the Baptist announcing to the world that they are CF kids. They are NOT CF kids; they are normal kids, with preferences and hobbies and friends and interests and dreams, and they also have CF. They are really scared that CF is going to swallow up their identities, and at their age, they were already struggling to find out who they are. They need all the help from us (and from our relatives, friends, and neighbors) in developing their own Selves and not becoming victims, not letting CF become their identity. (We are going to a large family reunion soon, and I have already started composing the e-mail I am going to send out in advance, asking the family not to talk about this or ask me about this at the reunion. The diagnosis was after the last reunion, and all my relatives are going to want to ask me about her, but that topic is off the table. We will be there to enjoy ourselves and have a mini-vacation, and my daughter does not like to be talked about, so my relatives are just going to have to talk to me about it via e-mail some other time.)</P>
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<P>I have gone on too long. I hope some of the things I have mentioned might work well in your family. Your son has his own personality, and his own needs, and, unfortunately, his own fears and pain, so what works in our family (and I don't really even know anymore what works in our family) will not necessarily be right for yours, but perhaps something I have said will be a jumping off point for you and him to move forward.</P>
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<P>Best wishes, and, please, know that you are NOT alone.</P>
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<P>Sincerely,</P>
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<P>Kate</P>
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