Monday, April 14, 2014

Bronchoscopy, CT Scan and Annual Review 2014

The past two weeks have been insanely busy for us, as it's that time of year when Victor has his bronchoscopy, CT scan and annual review.

Our time started last Tuesday with a lung function test. He was given a sedative so he was asleep for the procedure, which went very quickly. He took advantage of the situation and had a decent nap afterwards!



On Friday it was time for us to head into PMH early for Victor's bronchcoscopy. We managed to be first on the list, which was great. Everything went really well and his airways looked great.

The next Thursday was our Annual Review, where we received all the results and had a more in-depth consult with the entire CF team. Basically, things are great. There were no bugs in his lungs at all and the CT scan looked wonderful. Just what we wanted to hear!

The doctor did find a little bit of pseudomonas in his throat, but it was confirmed that the bug was not in his lungs so we're in the clear. Of course, if his health changes at all, we'll be right back there to figure out the best course of action.

Aside from that, Victor is growing well and everything else seems to be on track!


Monday, March 24, 2014

Mind Your Words

I'm still here! After posting every day for a month, I needed to take a break. It ended up being a longer break than I intended and it's been nearly a whole month since I last posted!

We've been busy with life: school, playgroup, dodging library fines, and I'm back at uni.

However, there's been something weighing on my mind that's been sitting there for a while. It has to do with people spouting well-meaning platitudes that unfortunately come across as being condescending, hurtful, ignorant or even just cruel.

A few weeks ago a friend posted something on facebook along the lines of 'all that really matters is that the people you love are happy and healthy. Everything else is just sprinkles on the sundae.' Now, aside from the fact that this little saying is quite revoltingly saccharine (not sure how anyone could honestly say that with sincerity), what is it really saying about people?

At first glance, this cutesy little clump of words tells us what to truly value in life. It could be interpreted as saying that all our superficial worries are meaningless, because health and happiness are what's truly important. Now, on that point, I can agree. Society is wrapped up in meaningless little squabbles and places value in all the wrong things. But look again at how this is worded. It is essentially saying that happiness and health are the most important things in life. Well, are they?

While I think most people would agree that striving to live a healthy life is important, the fact is that not everyone can achieve the gold standard of 'health' that this little saying seems to be talking about. It seems to ostracize those with chronic or incurable illnesses. What do they get? No sprinkles on the sundae and maybe not even a sundae to begin with?

If this friend had simply posted about how happy she is that her family is happy and healthy, I would agree. I am happy for everyone who manages to attain this, whether through hard work or dumb luck. But the wording of the platitude makes it about other people. And you know what, it's actually not ok to make blanket statements that refer to other people. About anything. Even if you are a dead celebrity (because it's not my friend's original quote).

I get that this was well-meaning, but at the same time, it really stung when I read it. I couldn't help but feel bitter about it. You have your health? Well aren't you just fabulous.

It's almost as bad as the throwaway line that gets spouted by millions of smug, unthinking pregnant women. "I don't mind if it's a boy or a girl, as long as it's healthy."

Sorry, what? As long as it's healthy? And what if it's not? You'll send it right back to the baby store? I heard the stork doesn't have a good return policy.

Obviously everyone wants their baby to be healthy. You don't have to say it, we already know. We also like to assume that people love their children whether they are born practically perfect in every way or with some additional challenges to face. This little saying, though, makes me wonder. Think about it: we'll love a boy or a girl, as long as it's healthy. What's the unspoken part that comes after that? And if it's not, well...

Luckily, there's a very simple solution. Think about the words coming out of your mouth. If you can't think of anything to say aside from parroting a tired, patronizing line, then maybe it's best to not say anything at all.

Try this one instead: "I don't mind having a boy or a girl. I hope our baby is happy."
Or this: "I hope our baby is healthy, but if not, we'll still consider ourselves lucky to have them."

We have to take care of each other in life. It's no use spouting little sayings about the important things in life if they are not said with kindness and empathy. After all, no one knows what the future holds.

Friday, February 28, 2014

The Meaning Behind "Frozen"

The boys have been obsessed with Disney's new movie Frozen. For those of you who haven't seen this movie, you might want to stop reading now because this contains spoilers.

Art copyright believed to belong to Walt Disney Pictures. Origin

The story is basically about a princess, Elsa, who can magically create ice and snow, but after an accident she is forced to hide this ability away until she can control it. Her childhood motto, "conceal it, don't feel it, don't let it show" underpins her entire existence. She even hides from her younger sister, Anna, creating distance between them.

Eventually, Elsa's secret is revealed in a dramatic and negative way. She then runs away to live her life in freedom, in the snow-covered mountains. Anna goes after her, looking for a way to get rid of Elsa's magic ice that is now covering the town, and searching for a way to connect with her sister.

The ending, and moral of the story, is that love can melt a frozen heart. Anna needed an act of true love to fix her heart, frozen after being accidentally struck by magical ice, and she believed that she needed true love's kiss. But it was actually the love of her sister, Elsa, who broke the spell and restored their town to its correct season.

When I first saw this movie, I thought it was cute, although a little bit cheesy. But I guess all Disney movies do need that bit of saccharine, and showing the power of love in all its forms is a great message to send young viewers.

As I watched it more and more (and more....I told you, the boys love this movie), it finally dawned on me that Elsa's powers were actually metaphorical, and there were far deeper meanings present in the story than I had noticed at first. Yeah, I'm the best English student in the world. Only took me how long to work this out?!

I think there can be a few specific interpretations for Elsa's powers. One that seems to fit is that Elsa is gay. It's mentioned in the film that she is born with these powers. She is different, and she is instructed to hide her difference away by trying to repress it. I know that's a message that a lot of gay people receive. This never worked well for her, and eventually she ran away where she could be free to be herself. Subsequently, she was a lot happier for it, and created a magnificent ice palace (and somehow made a dress out of...ice?). When she finally accepted herself for who she is, she was finally able to control the powers that had ruled her for her entire life.

However, my first guess was that Elsa had a problem that could be seen negatively, but if she learned to work with it and accept it, could work to her advantage. I was thinking along the lines of autism, which society often labels a disability, but if it's viewed as just a different way of thinking rather than a disadvantage, can actually be more like a gift. Rather than trying to force people into perfect boxes, we need to learn to accept people as they are.

This interpretation can work with anything, really. Elsa is everyone's princess. She represents everyone who ever felt different, everyone who never fit in. She's the one who was told to conceal it, don't feel it, don't let it show. She's the one who tried so hard to "be the good girl you always have to be". The metaphor actually works better in a more general way. It's open so that people can freely make their own interpretation and relate to Elsa on a very personal level.

Elsa shows that being yourself is the best way to live. She learns to control and work with her power, bringing beauty and joy to everyone around her.

But, we can't forget another very important character: her sister, Anna. I think it's really important to notice that Anna always accepted and loved her sister. She never shunned her. She was never afraid of her. When Elsa physically hid from Anna, Anna never gave up trying to connect with her sister. When Elsa's powers were revealed, Anna wanted to help her sister. When Elsa ran away, Anna ran right after her. Elsa was so convinced that she had to hide away from people that she even hid away from the one person who loved her unconditionally.

Frozen is far from a simple cartoon for kids. It can teach us many things about love and acceptance. Acceptance of others, and acceptance of ourselves. And I love the Trolls: how many nuggets of wisdom do they come out with, and they're completely adorable! What a wonderful modern fairytale for today's children: catchy songs, stunning visuals and beautiful messages for them to internalize, making this film an instant classic.

Thursday, February 27, 2014

The Germs Have Spread!

I didn't post yesterday because germs were attacking me internally and I had to go to bed right away. Seriously, I couldn't stand to be awake, so the minute the kids were in bed I went to bed too. I really needed it...I must have slept for about ten hours. I had a fever and everything hurt. Even my skin hurt where fabric was against it. I took some Panadol and fell asleep as fast as I could, which was pretty fast.

Both the boys have this horrible cold, although I think I have it the worst. Phil's managed to avoid it so far and I really hope he doesn't get it. Felix is pretty much over it now, I think. Even though he had a low fever on Sunday he always insisted that he was fine and didn't feel sick. He still has a bit of a runny nose and the occasional cough but it generally dries up by mid-morning. Aside from that, he is his usual self and running around as normal.

Victor also has a runny nose and has sneezed a few times, but luckily he hasn't started coughing. I have an ear out for it but so far he's in the clear. He's been a bit more tired than usual but aside from that, playing and eating as normal.

It's easy to think that every illness is disaster, especially in the early days with cystic fibrosis. I've come to realise that it's just not the case. Kids with CF are definitely capable of fighting off infections without any assistance: Victor has not required any medication for this summer cold, which is really good. A common misconception is that people with CF have weak immune systems or that they are immunocompromised. The reality is that their immune systems are just as good as anyone else's, unless they have additional conditions as well as CF. The reason that people with CF have to avoid germs as much as they can and why respiratory illness is more serious for them is because of the condition inside their lungs. Inside their lungs is thick, sticky mucus, which they can't expel on their own. (This is why we need to do physio twice a day!). This mucus creates the perfect breeding ground for all sorts of nasty bugs, including opportunistic pathogens that aren't of any concern to healthy people. So if Victor can avoid catching respiratory infections in the first place, then we can avoid them spreading and setting their claws into his lungs, where they will multiply and create permanent lung damage.

Of course, this is real life, where there's just no chance of him living illness-free forever. Three weeks in, and Felix has already brought germs home from school. We knew this would happen, and it's just something you have to deal with. No one can live in a bubble, and it's not fair or practical to even try. We try to do our best with common-sense hygiene. Perhaps we think about it a little more than everyone else does, but it is a big deal for us.

Anyway, here's hoping that this stupid bug leaves us very quickly. I'm feeling a lot better than yesterday, just congested, which is very annoying. Now I'm just going to keep a careful eye on Victor over the weekend...he did have a little fever today, but maybe a good sleep tonight will show it the door.

Tuesday, February 25, 2014

Thinking About Fundraising

Oh, something I forgot to mention. I joined the P&C Committee at Felix's school. I have expressed an interest in doing this for a long time, but I worry a bit because a lot of the 'been there, done that' mums have told me not to. Why?! I asked. Is it like the Mafia? Is this a life commitment?

No, the reassuring answer came. It's just a lot of work.

Hmm, work you say. Well, I don't want to take on too much. At the same time, I am pretty nosy and want to know everything that's going on.

I went to the first meeting and it was pretty good. I guess a lot of other people received the same message because there weren't many people there at all. I'm really glad I did go, as it gave me a lot of insight into how the school functions and things that are happening in the pipeline. It also laid bare just how vital fundraising and donations are for the school. It's a public school, so you'd think the government would cover all of our needs, but the government only covers the absolute basics. If we want things like smartboards, new library books, excursions, things like that, we need to raise a certain amount from the school community. Obviously, the way the government recently decided to cut the education budget is not exactly helpful.

Fundraising is such a difficult thing to do and it's also tricky to know which is the best course of action to take.

Do you ask for a set amount as a school contribution from each family per year?

Do you set up fundraising activities and sales throughout the year?

There are pros and cons to each. If we ask for a set contribution per year, people may not pay it. Some people might feel that we're asking too much. If we set up activities throughout the year, people might feel as though they're constantly being heckled for money, and obviously it's a lot more work to set up.

On another note, I am pretty sure that I want to give CF fundraising another go this year...we participated in Great Strides in 2012 and while it was a great experience, it was also very emotionally taxing on so many levels. Or maybe I'll just 'borrow' a few fundraising ideas and we'll have our own event!

Optimist or Pessimist?

I would definitely consider myself an optimist, mainly because I don't see much point in being anything else. I don't think being optimistic means that you naively assume the best, no matter the odds or evidence showing otherwise. I think being optimistic is a decision that you make every day. It forces you to be creative and never stop searching for a solution to whatever problem you're facing. It gives you the ability to see what you have, in its entirety: life will give you the cynical view. You don't need to search for that. Optimism gives you the positive side. Sometimes, the only positive thing is that maybe you can help others. Sometimes, the only positive thing is a lesson learned the hard way; but those lessons are often the most valued.

I'm not saying that everything in life is wonderful or something to smile about. There are far too many things that are pure misery and hopelessness. But by choosing optimism, you are choosing to put one foot in front of the other and keep going. Far from making you a silly do-gooder, it makes you resilient. You have to chug along on the belief that things will get better. Even when things get worse before they get better.

Everyone has peaks and valleys in their emotional state, and some seem more extreme or prolonged than others. Overall I'd say I am happy, perhaps a little anxiety-prone. Highly-strung, as someone once called me. They further elaborated, "There are greyhounds, there are thoroughbred horses, and there are people like you." But over the years I've been able to learn to moderate these extremes and gain control over myself. Instead of hitting the panic button the instant something doesn't seem to be going the way I'd expected, I can now calmly rationalize and think and work out the best course of action. Not 100% of the time...obviously. But when faced with a challenge, I tend to consider there must be a way.

Being able to calmly work out a resolution is a thousand times easier when it's someone else's problem. You're not as emotionally involved. But you get the most practise working out your own problems, and it's better that way anyway. I'm a work in progress, like everyone else on the planet.

One of my favourite little thoughts is the saying "plan for the worst, but hope for the best." It's helped me avoid disappointment just in the act of being prepared. It's a different way of considering what is the worst thing that could possibly happen. Sometimes when you think of things that way, you realise they are often not all that bad. You think, well, if that's the worst case, I can probably deal with that. But at the same time you are also keeping the glimmer of hope that things might turn out wonderfully, or at least not-bad.

So really, when you consider it that way, doesn't it just make sense to be optimistic? Doesn't pessimism seem like a gigantic waste of time and energy? Not only are you looking for the worst in every situation, you're likely to find it and that will obviously have a negative effect on your attitude and overall mood. You won't be looking for the solutions: you're giving up before you even start. I know which choice I'd prefer to make.

Sunday, February 23, 2014

First Illness of the Year

The dubious honor of having the first illness of the year goes to Felix.

Now I'm suddenly remembering all the things I wasn't looking forward to at the start of school, germs being one of them. I can't say I'm really surprised. Seems on target, to be honest. He has a temperature, a runny nose and a dry cough. He is insistent that he is perfectly fine and well.

I think all he needs is a good sleep and a few restful days. Wednesday is his first day of the school week, so hopefully he's better by then. It means I get to spend the next few days cleaning like crazy in the attempt to get these germs out of my house and minimize the spread (ha, fat chance).

Monday is meant to be our library day but we'll give it a miss tomorrow. Instead, we might do some quiet activities at home. Depending on how he feels in the morning, this might include setting him up on the couch with pillows and blankets and a movie, but we'll see.

Any time the boys get sick I take the opportunity to go crazy making all sorts of comfort food, which I guess they don't find too comforting since they hardly ever eat it (or like it). Oh well.

Anyway, that's how our weekend ended up: one sick boy and myself left with the feeling of germs everywhere and a little bit like an extra in the movie Contagion. I mean it's not quite on that scale, but quarantining is pretty ineffective in our house!

On the plus side I took the opportunity to show Felix the sneeze video and he is making a real effort to catch all his sneezes with his elbow. Yay!
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