Saturday, August 27, 2011

Photo Friday

OK, so I'm a day late with Photo Friday...


Breathe-Emptiness by Must Valge


Not so distant memories

Will my memories of NICU always be so acute? Will it seem like just last month forever? Does it ever fade?

Tuesday, August 9, 2011


I don't even know where to start with this one...maybe at the beginning.

I love photography. Not just taking photos, but looking at them. My own, friends, artists. Ask any of my friends, I'm always the one with the camera. I managed a photography studio for many years. When I look at a picture, it takes me right back to the time it was taken, emotions and all.

Since Ruby was born, I sometimes choke up a bit looking at peoples professional newborn pictures. To me, they represent how the post-natal period should be. Warm, snuggled, safe, perfect. Things that our family missed out on. It's just a reminder that life turned out different for us. It's not a bad thing that I get like this, I don't throw things at the screen when I see a new bubba! But I do sometimes get that pang of "oh, I wish I had that".

There are many chat/support groups on Facebook for people affected by CF. One of them is called "Get it off your Chest" and it's supposed to be a place where you can say what you're feeling.

Apparently not.

I posted in it about how I was how sometimes looking at these portraits sometimes niggles at me and how it reminds me of our experience. Well somehow on the screen it must have come out as
Geeze, my life sux! I can't believe that CF stopped me having cute photos to hang on the wall. I wish I didn't have Ruby, as not having any photos is sooo tragic that surely nothing else could even compare!!
Or something like that. Because the reaction I got was not what I was expecting. I was told by other CF mums that I should be grateful for what I have, and how "they wouldn't change anything" (like I was implying I would). I was sworn at, and told I was whining about stupid things.

I tried to explain that I'm not so shallow as to have a cry about missing out on nice photos, but about what type of emotions it bring up to me to see others photos.

Made no difference. Got told I should stop writing and f#@k off. So I stopped. I couldn't believe that I could be so misunderstood. Total feeling of frustration.

I checked back a bit later on and saw that Maddy had left a comment. She is 20 years old and is at the end stage of CF. She wrote this
"Ey everyone- this is called 'Get it Off your Chest' for a reason. Just because someone is going through something 'lesser' than yourself- you shouldn't look down on them. Lay off Danielle, she was only saying these 'perfect' pictures are her symbol of what ruby's birth wasn't. It wasn't the "STANDARD" birth where there's a mum and a dad and a smiling nurse and a "HERE'S YOUR BEAUTIFUL BABY BOY/GIRL!" photo still where everyone's beaming and saying "He or she is so beautiful- they are perfect, a perfect HEALTHY BABY" well done sperm and egg! You have A HEALTHY BABY ALL IS WELL. The poor girl is saying for her it was a mad rush of get this kid into ICU- humidcrib, stuck with iv's whatever happened to her- it was the beginning of her CF journey- and who wants to start that? If choice be given, you wouldn't want your kid to start that journey- or anybody to start that journey- because I tell you there's a lot of SUCK in this journey. I'm sure like any of you good mothers- you wish the best for your children..and Danielle only wished the best for Ruby- and ruby was born with CF- and that isn't the BEST possible outcome. Don't apologise, I didn't realise that "Get it off your chest" came with a list of no go zones either. She never said she wasn't grateful for Ruby- and we can't all be a ray of freakin sunbeam ALL the time either! We all have our off days, hell when it gets really bad- we can have off weeks- maybe even off years..we should all SUPPORT each other? Even if one of us is whinging about a sore throat. You'll be a better person for it..maybe. I think everyone saying they weren't offended is a bit of a fib, going on the general consensus of "oh my god appreciate what you have" thing going on there. 'Taking the higher ground' doesn't mean pretending you weren't pissed by what people are saying.?

And I thought, thank God someone gets it. I have also had a few other message of support since. But still, really opened my eyes to another side of the internet. The post quickly disappeared after that. I have since been "defriended" from a few people and chucked out of a few CF groups (including that one).

I'm still a bit baffled by it all...on one hand I know I shouldn't care what a bunch of strangers think of me, but on the other hand, I don't want people to believe that I am a dark, negative person. If you have ever read my blog, so will see my positive attitude I have towards life. 

I've never really had to deal with anything like this before...