Tuesday, January 13, 2015

The End of the Road

When I started this blog in August 2012, Felix was two and a half and Victor was three months old. I was feeling lost, confused, terrified, and isolated after Victor's diagnosis of cystic fibrosis so I decided to write about it. That decision lead to my discovery of a wonderful and supportive CF community, and suddenly I was no longer alone. Blogging gave me the confidence to write publicly, and writing about all the little things we were doing and how it affected us was very therapeutic for me.

Felix is now almost five years old and Victor is two and a half. I feel that we are at a very different point in our lives now and our family has evolved to suit that change. Cystic fibrosis will always continue to throw us curveballs but I feel more confident and at peace with it. 

Most importantly, I no longer feel this is my story to tell. My children are still so young, but every day they display a strength of character and independence. They are stepping into their lives and becoming their own people. Out of respect for them, I feel that the right decision for us now is to cease writing about the minute details of their lives. 

I don't know if this decision is forever, or perhaps I'll come back if things change. I love writing and I am considering starting another blog with a different focus. I'll still share things about my family on my personal Facebook page, but no longer publicly.

If you're reading this, I want to sincerely thank you for a wonderful two and a half years. Every comment and e-mail has meant so much to me, and I've met some amazing people here. Thank you for making this a wonderful experience.

This blog will remain here, but will no longer be active. I am always contactable through e-mail at laurenmccusker@gmail.com and if I do start another personal blog I will link up the details.

Thank you again, and I wish all of you the best.


Friday, December 5, 2014

Plug and Feather Stone Face Watches

Two years ago, two friends and watch enthusiasts from Santa Monica were frustrated by the lack of unique, commercially-available watches. They decided to fill this niche by creating Plug and Feather Stone Face Watches, a spectacular and elegant fusion of unique semi-precious stones and 21st Century timepiece technology. The result is a beautiful and distinctive watch, each one unique and with its own story to tell.

The face of the watch is crafted using Plug and Feather’s StoneStable technology to ensure the stone’s durability. As each stone is a piece of nature, no two watches will be the same: each stone face has the distinctive markings and inclusions unique to each stone. Using these stones as watch faces is an original concept and the result is an eye-catching, yet sophisticated timepiece.

You have the choice of several different stone faces, each sourced from a different international location. There’s Sodalite, a serene, royal blue stone first discovered in Greenland; Cloud Jasper, a marbled milky-white stone sourced from China; Charoite, a distinctively textured lavender coloured stone, sourced primarily from Siberia; Snowflake Obsidian, an offbeat mottled stone created from rapidly-cooling volcanic lava; and Carnelian, which has a delicate cherry shade and boasts a long history of use in jewellery dating back to ancient times.

Each beautiful stone is the star of the watch, placed in an elegant and simple setting so as not to detract from each stone’s beauty. The watches are available with either a steel or genuine leather oil-tanned strap for either a modern or vintage look.

Now, after two years of research and design, Plug and Feather are finally ready to launch these stunning watches. Using the Kickstarter platform, Plug and Feather are hoping to raise enough to fund their first line of watches. Kickstarter works by raising money through online pledges, but people backing the company are only charged if Plug and Feather reach their goal. Because of the great start the Kickstarter campaign has had after less than 24 hours, Kickstarter backers are being given a heavily discounted rate on the watches: only $99 instead of the usual retail price of $300. Backers are also offered free shipping within the USA and discounted international shipping.

Plug and Feather Stone Face Watches appeal to the traveller, the geologist, the nature enthusiast, the person who values uniqueness and creativity, or the person who appreciates beauty and quality craftsmanship. With your help, Plug and Feather can take the final step into making their dream a reality.

To pledge your support for this Kickstarter campaign, go to the Plug and Feather Kickstarter Campaign Page. By backing this project, you are eligible to receive rewards as well as receive a discounted rate for your very own one-of-a-kind, original Plug and Feather Stone Face Watch.

Tuesday, November 11, 2014

Finding Your Blogging Voice

I really struggled with blogging at first. I felt really awkward and worried that readers would be negatively judging my writing ability.

My confidence in my writing grew through academic writing that I do for university. As I've mentioned, I'm working towards a BA in English Literature, so I write a lot of essays for my course. I find academic writing a bit easier in a way. It's formal in tone and you can't inject your own opinions into it. It's nice to sit back and hide behind the learned persona. A person could read my essays and have no clue about me at all, which is kind of the point. But writing in that way feels safer. You're not vulnerable. I receive good marks for my essays and my lecturers always comment on my clear and fluent writing style. Having that sort of feedback on my writing itself has been a huge confidence booster.

Blogging, on the other hand, is the opposite of academic writing. It's highly personal and you are putting yourself way out there. Anyone who reads this can know all sorts of things about me that I've put into the narrative. It's also more informal in style, more conversational. I feel that the way I write here is fairly representative of the way I talk: full of contractions, colloquialisms, and slang.

Having the positive feedback from an unbiased source (my uni lecturers) has given me the confidence to write in other ways too, including here on the blog. I think it's taken me a long time to be confident in my writing and putting it out there for the world to read, but I'm feeling much better about it now.

The other thing that's helped me is reading. I've always read a lot, and I'll read pretty much anything but the biggest tip I can give is to read authors whose writing styles you want to emulate. If you want to learn a fast-paced, aggressive, informal style, read Stephen King. If you want a more refined, contemporary, literary style, read some contemporary literature: I recently read Burial Rites by Hannah Kent and really enjoyed her writing (and the story). If you want to write something set in Victorian times, read Mary Shelley. Or better yet, read all of them and use each author's strengths to develop your own style.

Tuesday, November 4, 2014

My Favourite Holiday Memory

As an Australian who has lived in Australia most of her life, I almost missed the best holiday experience of my life. Except, luckily, there was that brief interlude where I lived in America for about a year and a half. And in that brief period I got to experience the most wonderful holiday experience of my life; one I had never experienced before, and am yet to experience again. In fact, I don't think I'll ever get lucky enough for things to work out the way they did that day.

My holiday experiences in America were all wonderful and movie-perfect. Holidays fell in the correct seasons, I experienced Thanksgiving, a real Halloween, and a Fourth of July complete with fireworks in the street next to our wooden house (thanks guys). But really, none compare to what occurred on my Birthday Eve.

Are birthdays holidays? They should be!

I had never seen snow before in my life, but I'd always wanted to. It was definitely something on my bucket list. I wanted to see soft flakes falling, I wanted to build a snowman, I wanted to see everything covered in a cold blanket of white.

At the time of November 22, 2010, we lived just north of Seattle. I'd been cautioned that although it does snow in Seattle, it doesn't necessarily happen every year, and sometimes it's nothing more than just a flurry in the air that doesn't stick. But I was certain it would happen for me.

November 22nd is the day before my birthday: my birthday eve, if you will. I had been carefully checking the weather forecast every day like a girl possessed. I saw 'snow showers' being forecast, then changing, then forecast again, then going away again. It was driving me crazy. But, on that day, I saw it: the first white flakes swirling in the air. I saw the light dusting of powder settle on the hood of the car, on the pavement.

The flurry begins.

"It's snowing!" I was so excited I could hardly even stand it. Again, I was warned. The temperatures hadn't dropped below freeing yet, and it was far too early for real snow. Those might be flakes you see on the car and on the pavement, but they won't stick. You watch: the ground is too warm. The snow will melt before it can build up.

I was disappointed. We went to the store, we came home and did a few things. I caught glances out the window now and then, and I even went outside a few times to see the scattering of flakes and to attempt to catch a snowflake on my tongue (and failed miserably).

It was dark by late afternoon, so we had dinner and I put Felix, at that time a baby, to bed. We sat around and relaxed. We watched a movie. A few hours passed.

My sister-in-law Marissa had been outside for some reason or another, and that's when I saw what had happened.

The entire street, the neighbourhood, the world, had turned into a winter wonderland! Thick white snow covered everything in sight. The street had disappeared, and the snow kept falling, illuminated by the yellow glow of the street lights. Real snow! Real snow for me, the night before my birthday!

I wasted no time in throwing on the warmest clothes I had (jeans, boots and a borrowed ski jacket) and I ran gleefully out into the snow. I didn't care that it was 10pm and the neighbours were sleeping. I ran up and down that street. I made footprints in the snow. I gathered snow into snowballs and felt the icy pricks of pain extend through my bare fingers. I threw myself on the ground and made a snow angel. I watched the occasional car slowly make its way up our street in the darkness, the headlights making the snow shine. I played out in the snow until I physically couldn't stand the cold any longer, and I finally headed inside.

The next day I woke up a year older and to a beautiful landscape of snow glittering in the sunshine. I can't remember how long the snow stuck around for, and we did have several snow showers that melted away that winter, but I'll never forget the time it snowed just for me.

The Perfect Organisation

I know I write a lot about cystic fibrosis (obviously it features quite heavily in my life) but I've been thinking a lot recently about my career. You know, the one that doesn't exist. That career will hopefully exist at some point in the future, once I get that pesky degree out the way and both the kids are in school.

In considering what kind of career I'd like to have, I've been taking my interests into account. Besides my family, my first love is English. Which explains why I'm studying a BA in English Literature. I enjoy writing and reading, and if I could one day be paid to write I'd be living the dream. Humanitarianism is also something important to me. If I could combine the two, I could happily do that for the rest of my life.

I'm participating in NaBloPoMo this month, and the first prompt asks participants to imagine an amazing brand or organisation they'd love to work with. Well, here's mine.

Imagine an organisation that sends writers to Australian offshore detention centres. Writers who could interview the asylum seekers and refugees seeking Australian protection, who could get to know these people, these families, who could understand where they've come from and where they are currently. Writers who could give these people a voice. Writers who could tell their stories.

Imagine all of these stories in a collection: a website, or even a book. Australian politics have been grossly over interested in asylum seekers and refugees in Australia, and to their detriment. The government has decided to take a hard line when it comes to desperate people seeking refuge. I don't understand it, and the only thing that keeps me going is knowing there are a lot of fellow Australians who don't agree with the government's stance.

Asylum seekers are not the enemy. They are people just like you and me, with educations, families, jobs, skills, hopes and dreams for the future. They are running away from desperate circumstances and the Australian government feels it is right to throw them into detention indefinitely instead of extending a helping hand. We are wealthy with rich resources: more than enough to go around.

I think telling their stories is incredibly important. These people are treated like dirt, like a plague threatening the Australian way of life. Nameless, faceless, the enemy. Let's give them names and faces. Let's show people that we are the same. Let's bring them into the light and welcome them with open arms. Maybe this will change the current fear and hatred they face. Maybe it will convince people to be kinder, to fight for change, and to help asylum seekers.

That is my perfect organisation: writing to enact change and to give a voice to the voiceless.

Thursday, October 9, 2014

The Pharmacy Dilemma

Hello! Yes, I know, I've been AWOL. All the usual excuses, etc. 

Anyway, there have been some changes to the way things are run at PMH pharmacy. I found this out recently when I went in to pick up some tobramycin for Victor. He'd had a cough and we decided to start him on a two-week course of nebs (totally cleared up now). The first change is that PMH staff cannot drop the scripts into the pharmacy for you any more...so I had to arrive at PMH, pick up the script from Respiratory, then head upstairs, drop it into pharmacy, and then hang around for ninety minutes while it was filled. Naturally, this caused some annoyance. 

Then when we went back on Thursday for our usual clinic appointment, I learned something amazing. Scripts no longer have to be filled by PMH pharmacy. That's right, I can take the script anywhere, to any pharmacy, to be filled.

What this means is that I no longer have to hang around for three hours, waiting for meds every few months. I can drop the script into my local pharmacy and have it filled there in just a few minutes. This is game changing! This is totally amazing!

But wait! Don't you know that if something sounds too good to be true, it usually is? Yeah, now for the bad news.

The problem with picking up CF meds from a regular pharmacy is that they don't generally have these types of meds in stock. I called our local pharmacy and asked whether they could get any Creon in for us. They said they could, and it would take about 24 hours to arrive. That sounded perfect to me.

However, when I went to pick up the Creon, they only had five bottles in stock...not twelve. They said the rest should arrive the next day. So I paid for the lot and took the five they had home with me.

The next day they called me and said that their supplier was actually out of stock.

Basically, this has turned from a three hour wait to an entire week of waiting, and just for one medicine.

I guess this is the reality of living with a 'rare' disease. Your local pharmacy pumps out thousands of boxes of antibiotics, contraceptive pills, antidepressants, heart meds, and various other remedies with speed and precision, every day. But we are living outside the norm. Most people don't even know what Creon is, let alone order it on a regular basis. 

I'd really like to establish a good relationship with a local pharmacy: pharmacists who know us, know the family, and understand our (apparently unique) medical needs. I could rely on them to have our meds in stock each time (and really, I don't think that's too much to ask: we order the same thing, more or less, every three months, barring the occasional order of tobramycin). Is this feasible, or am I reverting to some small-town dream?

Another factor which may be worth taking into consideration is that with the load taken off PMH pharmacy, perhaps the wait times won't be as long there? Ok, don't laugh. I think we all know that's just never going to happen.

So which is it: 3 hour wait after clinic, or the ambiguity of not knowing when/if the meds will be coming in closer to home? 

Hopefully we'll be hearing from them soon! 

Monday, May 12, 2014

I Was Featured on BlogHer

Did I tell you? A post I wrote, Mind Your Words, was chosen to be featured on BlogHer. The title was changed and a picture added, which is fine by me, because I can't think of titles to save my life. That's why all the titles I come up with are crap. I really struggle with it. Anyway, you can imagine how excited I was! VERY. I skipped around the house and was totally unable to do anything else for the rest of the night. I just bounced around and kept asking Phil, 'are you impressed? Isn't this amazing?' He agreed that yes, super impressive, yes, so amazing, now please calm down. I did not.

Eventually the comments came rolling in. Yes! People are actually reading things I wrote AND responding to it! Then I read the comments. Whaa...?

Ok, so, not everyone is going to like the things I write. I'm totally fine with that. I did feel that a lot of the comments missed the point of my post completely, but whatever. Some people got really angry with me. One person instructed me to run my computer over with my car. Don't think I'll be taking that advice. I mean, my computer is pretty clunky and slow, but how else am I going to unintentionally rile up complete strangers?

Still, I learned from the experience. I think it was probably posted in the wrong 'section'. It was posted under the Blogging/Social Media section, and I can see why that may have fit, but I think it would have been better received if it had been posted in the Family/Special Needs section. I think that the post really had less to do with how people conduct themselves over social media, and more about being sensitive to special needs families and considering your audience.

I also realised that most of the readers (all of the readers?) had not read my blog and did not know anything about me or my family. So the post probably came across as sounding quite weird. I also had commenters ask if I had a sick/special needs/disabled child. I think if I'd made it clear that I am the parent of a child with a chronic illness, it might have added a bit of context. I had originally written the post for this blog, and people who read my blog know about us. If they're new readers, I've made it simple to find out our background (Start Here). But when the post made its way to another platform, that context didn't follow along with it.

Ironic that a post I wrote about being careful what we say and who we are saying it to taught me the same lessons that I'd been trying to describe.

Of course, the comments weren't all negative. There were a lot of positive comments in there too, people who understood what I was trying to say and who could relate for a variety of reasons.

I welcome all feedback on my writing. The negative comments could have been a little more constructive, but it helped me understand my audience and improve my writing. And you know what? I have another post being featured this Wednesday!

Overall, though, I just hope that I can make a connection to others through my writing. Because that's really what blogging is about: community.
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