Thursday, March 7, 2013

Dropping the CF Bomb

By now, cystic fibrosis is a part of our lives. It's starting to become more normal, less shocking. I am reminded every day of it when I have to give Victor enzymes before he eats, when we do his physio twice a day, when he gets his antibiotics and supplements and all the rest of it. So it's always quietly lurking there in my mind and over the months I think we have all become accustomed to it. I forget that other people are not at this point. Other people who don't know me or my family sometimes get a CF bomb dropped on them, completely inadvertently, and it's a bit of an awkward situation.

What is a CF Bomb? It's when I casually throw into conversation that Victor has cystic fibrosis. Sometimes I have to, to put a story into context, or sometimes it just happens because I forget that people don't know. The reaction is always the same: a swift contortion of the face into a look of concern. Their voice turns quieter, they say 'oh', and stutter for a bit because what do you say to that? I never mean to upset anyone but I can't think of a way to say it without eliciting that response, which is why I tend to just throw it out there and then quickly bury it in more conversation: a change of topic, or barging on ahead with what I was saying originally, anything.

A perfect example would be the electrician who came to my house a few weeks ago. We've had a dodgy situation with a light out the front of our house, so he came to have a look at it. He was a really nice man, very chatty and friendly. He had come to the house a few days previously but I was at a hospital appointment with Victor so my aunt was there instead. He mentioned this and said that he'd heard Victor wasn't feeling too well, and we had gone to the hospital? I was confused for a minute and then worked it out. "Oh no, he's fine," I said. "He just has cystic fibrosis so we go to PMH a fair bit for his appointments." And there was the expected reaction: his face fell, he said "well, he looks really good," and I think he said something to Victor and we moved on to talk about the light.

I felt guilty after this conversation: he was just trying to be nice, although he was the one who brought it up and I don't know what I'm supposed to say except the truth. I wondered if he knew what cystic fibrosis is; lots of people don't. Or if they do, they usually know only a little bit of outdated information which makes things seem much bleaker. But in general, once the CF Bomb is dropped, it tends to hang over us like a cloud until the conversation is over.

I have CF Bombed someone intentionally once. I felt kind of weird about it at first, guilty even; but then I figured so what? I never told a lie. And even with the amazing medical advancements, it still really sucks. It really does. And this kid needs to catch a break. We all need to catch a break. So recently I was on the phone to QANTAS requesting a bassinet seat for Victor. Luckily, I got the nicest lady on the planet on the phone. She chatted to me while she looked up my ticket; I wanted to make sure my ticket was connected to Phil's and Felix's tickets (they were booked separately). We discussed the bassinet seat, which is usually reserved for small babies. Victor will be 12 months at the time of the flight and it's a first in, best dressed kind of situation when it comes to bassinet allocation. She explained the weight limit (11kg). I said that won't be a problem as Victor is quite small at only 7kg (I don't think he'll be putting on 4kg by May). Then I sort of slipped in that Victor is small because he has cystic fibrosis. "Oh, the poor little thing," she said. "Look, I'll write a note on his ticket about that so when they do the seat allocation they will see it there and it might help you get a bassinet over someone else." Hey, this seat allocation is a ruthless game. Did I feel guilty about using his illness to potentially score a good seat? A little, but now I don't. Ideally there will be enough bassinets for all the babies flying; if there isn't, then perhaps it will make the difference between us getting the last bassinet over a similarly-aged baby. Maybe it won't make any difference at all. But I would love to have somewhere for him to sleep for at least part of the 23 hours we'll be flying.

Obviously we don't run around town announcing Victor has CF with a loudspeaker but sometimes it does come up in conversation: it's inevitable. Hopefully I will figure out better ways to say it and won't live my life leaving a wake of shocked people in my path.

Has anyone else ever dropped a CF Bomb? Is there a more graceful way of going about it?

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