the fifo wife

Imagine having your child having a disease with no known treatment or cure. A disease so rare that they know so little that they as a medical profession can’t answer your questions. A condition that does nt get front page news and so it does not get funding or research. So they those you look to are unable to tell you what to expect or how to ease your child’s suffering. You are literally scrambling helpless in the dark.

There would be no word that could describe your helplessness.

So today the 28^th of February is Rare Disease Day.

Rare Diseases are defined as a condition, syndrome or disorder that affects 1 in 10 000 people or less (The Australian Therapeutic Goods Authority).

Some prevalent statistics about Rare Disease include:

• There are more than 8000 known rare diseases
• 80% rare diseases affect children and most begin in childhood and continue throughout life
• Although each disease is rare collectively they affect up to 10% of the population
• Neurological and intellectual disabilities occur in about half of all cases regardless of disease type and lead to loss of independence and opportunities.
• Obtaining a diagnosis is often difficult and delayed and most have no cures

 

One of our lovely readers Lynda child suffers from Glutaric Aciduria Type 2 . It is a rare disorder so rare they are unsure of its true numbers. What they have discovered through limited funding and research is that is an inherited disorder that interferes with the body’s ability to break down proteins and fats to produce energy. Incompletely processed proteins and fats can build up in the body and cause the blood and tissues to become too acidic which if not constantly monitored can mean death.

Imagine dealing with that on a daily basis.

In Lynda’s words ‘families and carers of children with rare diseases experience significant psychological stress due to social isolation, unemployment, diagnostic delays, lack of information and difficulty accessing appropriate health care.

The rare disease patient is the orphan of the health system, often without diagnosis, without treatment, without research and therefore, without reason to hope’

Place yourself in those shoes for just a minute.

So how can you help Lynda and others in her position, her child’s position?

Head to Rare Disease Australia Face book page or register your support it’s that simple.

xx Deb

 

Information with thanks:

* information regarding http://ghr.nlm.nih.gov/condition/glutaric-acidemia-type-ii

** Rare Disease Day

***Image with thanks to the abc

These are some rare images taken at Penn Station 1943 at the height of the second world war. Taken by LIFE’s Alfred Eisenstaedt they capture true good byes. Candid images of what unknown good byes look like. Some of these boys and men may have returned others not. These men and women are true hero’s.

I am a massive fan of photography. In particular life photography capturing moments in time for ever candid real life moments. So as part of a new series I’m divulging my love of the art on to you. I hope you enjoy these moments as much as I do.

 

xx Deb

*images via Wall Breakers

Pad Thai.

Pad Thai is my FAVOURITE meal in the world absolute favourite and each time we go to the city its the thing I order for lunch. I have only made it home successfully a couple of times and usually it was bland but I found this recipe and yum! It looks like a lot of ingredients but its not and its really quick to make once you have everything laid out in front of you which is the key to any fast cooking~ thank you Jamie Oliver~ its done in no time. Some of the ingredients are optional and some you can use substitutes for and often like to add prawns and some tofu to mine.

 

What you will need:

300g flat rice noodles
2-3 tbsp fish sauce or light soy sauce, to taste
3 tbsp tamarind paste (or 4 tbsp lime juice, if you can’t find tamarind- available in the asian food section at the supermarket)
2 tbsp palm or brown sugar
4 tbsp groundnut oil (or any oil you have on hand I used vegetable)
400g skinless boneless chicken, breast and/or thigh meat, sliced
4 garlic cloves, finely chopped
3 shallots, finely sliced
1 tbsp Thai dried shrimp (optional)
2 tsp mild red chilli powder
3 eggs, lightly beaten
150g fresh bean sprouts
75g unsalted roasted
Peanuts, chopped
Small handful coriander, chopped
2 spring onions, finely sliced
1 lime, cut into wedges, to serve

How to:

1. Cover the noodles with just-boiled water and set aside for 10 minutes. Mix the fish or soy sauce with the tamarind paste and palm sugar in a small bowl and set aside.

2. Heat a large wok, until it is smoking hot. Add three tablespoons of oil. Tip in the chicken pieces, frying and stirring for three minutes, or until the pieces turn golden. Add the garlic and stir-fry with the chicken for a few seconds. Follow with the sliced shallots, dried shrimp (if using) and chilli powder. Stir and heat through for a few seconds.

3. Drain the soaked noodles and toss well with the ingredients in the wok. Stir-fry for one to two minutes – the noodles will start to soften and change texture.

4. Push everything over to one side of the wok. Add the remaining oil to the cleared area and crack the eggs on to it to form an omelette. When the eggs have set, cut into small chunks with your wooden spoon or spatula and stir in with the noodles.

5. Add the tamarind and sugar mixture to the wok, folding it in to coat everything evenly. If the noodles are still too firm for your liking, splash a little water over to help them cook. Add two thirds of the bean sprouts and sprinkle with half the chopped peanuts. Taste and add a little more fish sauce or sugar, if you like.

6.  Stir and, when the vegetables are beginning to wilt, transfer to a serving dish and shower with the remaining chopped peanuts, coriander and spring onions. Serve with lime wedges.

Serve on its own! Yum.

I was a little behind yesterday in everything. Truth was I so tired I felt drunk; I was not however drunk but I do have a tendency to say things like I was or were. And typically when I’m tired drunk I say and do things that I wouldn’t normally say or do. For instance I apparently promised my children a surprise of some sort from Sydney town. Like I had the time to tramp into town; after attending two fairs, each 40 minutes apart to fossick through Myers or some other over priced Sydney store? Why would I do that? Tired Drunk.

Then my husband tells me I also promised him a little something? He rattled off that I promised him something as repayment for his renewing my Qantas club membership? Ah no that’s just called loving your wife so she doesn’t hyperventilate in the cleanest corner she could find and I don’t recall promising any such surprise but you know close your eyes and get on with it. In terms of surprises men are usually easily fixed.

The kids they are not so easily fixed but I did my best and qued for Krispy Crèmes for what seemed like hours and then the carted them round Sydney’s over crowded T2 and then into a jam packed Jetstar flight however my inconvenience was obviously was not enough for my cherubs as they woke me extra early yesterday morning to ask where their presents where slightly disgusted despite the fact that the worlds best doughnuts where sitting waiting for them on the kitchen bench. My present to you I said to B1 trying to make it sound equally exciting as it was not is I’m going to let you have a doughnut for breakfast. It didn’t cut the mustard.

Oh well.

So these things are what ran through my head last week, yesterday and today and are as varied as the sites I saw over the weekend.; this my few things for Feb 26th 2013.

1. My trip to Sydney was super quick so I decided to stay at one of the airport hotels. I stayed at the Mercure Airport. It is undergoing refurbishment but the staffs were sensational, breakfast was fantastic, the rooms were lovely and it had a pillow menu need I say more. It was perfect for a quick trip. Need a room and location is not an issue head there. True a pillow menu and bacon sandwiches are all good reasons to flock there

2. It was wonderful to see that buyers and wholesalers are seeing the value in vintage and re purposed furniture. A thing with a story and a heritance value is much nicer to have in your home. Thank goodness is all I can say.

3. The fashions of the fair are one of my favourite parts apart from the shopping. From a girl in boots with her dressed hoiked up in her knickers to a girl in heels so high it’s a wonder she didn’t have a bloody nose.

4. I loved my trip to the city as quick as it was right up until I was asked for change by a heavily pregnant girl. Who was clearly a girl and who was clearly off her tree on something? I said no I’m sorry and she went about her business of picking up cigarette butts and talking to herself. It was then reality dawned on me then that feeling of WTF is wrong with you girl can’t you see and now all I can think of is that baby and just hope and pray like hell that she the mother wakes up or she finds someone who can help her too.

5. My husband leaves for the gold coast for his brother’s buck’s week today. They wanted to go somewhere and do something rather than piddle it up a wall in a 12 hour period. I am so pleased to see them go together. It’s what I have wanted my husband and his brothers to do for years. However GC don’t say I didn’t warn you they will be the ones wearing their best pluggers and Jackie how singlets..All for your comedic viewing pleasure. Im so happy for him right now.

6. I have a baby home sick with me today. Fever and headaches. This B baby never gets sick so I’m bracing for something flu like.

7. A really piece of useless knowledge well for some it may not be useless but in North Korea women can only wear 18 different styles of haircuts. Only haircuts sanctioned by the government can be worn. Number 12 please? Head here for a look see. I can not see a mullet do there at all..

8. Were you a teenage girl of the 90’s? I was head here for a few reminders of what was cool back then..

9. So the latest beauty treatment is to set fire to yourself..well not you..you pay someone to do it. Of course it originates in China those crazy little cats and has been around since the Qing dynasty. It’s meant to help re-channel and aid in healing and is also touted as having rejuvenating qualities and has been used to treat over 100 ailments. I think..I could be wrong; I’m still reeling from the idea you allow someone to set you on fire and it can be applied any where including the cervix. Yes that’s right. However there are ten taboo’s and should you be among them then this little treatment is not for you; Cloudy sky and raining, pregnant women, cancer, mind confused, heart disease, severe diabetes, renal insufficiency, high blood pressure (systolic 170+), skin disease, or menstruation. Head here for more details if you really want to.

10. Want to mix up your craft session then head here..Please be warned this is not your average sharpener and don’t ask me how I found it..It’s just my job to share these things..

So tell me my sweets what are you up to today? Beauty treatment or two? Or perhaps you’re in the market for a new sharpener.

xx Deb

 

I got home from walking the dogs this morning and did something extraordinary-I baked a cake. Yes. A cake. First thing this morning because I saw a recipe on the net and decided I had the time. The time? Yes the time.  As I folded the chocolate chips into the batter it occurred to me what I was doing. I stopped for a moment. Truly stopped and considered what I was doing. Was I on a hormonal high, had I hit my head unwittingly on my walk? Why exactly was I making this cake apart from the reason I could? Was it asked for? No, there was no reason apart from the fact I felt like it. It was easy to do.

Had I considered doing this last year? Hell no it wouldn’t have even entered my mind. Everything last year especially towards the end of last year was an effort. Being a wife, mother and me was an effort. A real effort.  Some days I would roll over and go Christ another day really. The mundane it was horrible. I know it was a choice and I did my best but I was tired of being a mother, truly and I say that because I can and its allowed I am human and no one suffered in the making of this story; well maybe a little but I swear it was for its their own good.

Yes I can hear the gasp and no doubt I will lose a few but that’s okay I have learnt to walk the walk and talk the talk. I’m okay if my honesty offends you. Truly. So I will now contradict myself as I feel the need to explain not only because it’s part of the story but because I don’t want you to judge me without knowing the whole story.

Now it’s fairly well known to most of you but for those who don’t know; I have no family here in my sweet country town.  I do but I don’t you know. It’s their choice as well as mine. It works for us. I have my parents who fly down as often as they can and I have amazing neighbours who without I would have surely killed my children. They right there represent what family means to me. So husband works away four weeks on and off and I (we) do love it. So I have it good for six months of the year but those other six months were until now hard work especially for the first few years. FIFO or not motherhood is hard work. So apart from my husband and when I asked my neighbour I had no support. No one to fling the kids off too when I need too; I had to find the time somewhere between the stuff. Sometimes I would turn the TV on and run the hill or play hide and seek. I would hide and they wouldn’t seek me for 20 minutes while I sat, drank coffee and read a book in the laundry cupboard by torch light; it’s true. This life was my choice and desperate times called for desperate measures.

I remembered a dear friend saying to me; it’s hard now but it’s worth it in the end give it a couple of years. That was when my youngest was born. I think I grunted at her. How could it get easier? They always needed me. There was always stuff to do never a chance to stop and breathe. Everything was just so damn hard. Now I am well aware I chose to have three babies all deliberately spaced a year apart. It was my choice to live this way. So it was my choice just to suck it up and get on with the job at hand and do the best I could. I have no right to whinge; all of this was my (our) choice but let’s be honest some days as a mother can suck really suck. We can make boats, read books, make play dough from scratch, make puppets out of socks, we can blow bubbles from our own spit, make things go bang and we can watch High Five fifty times over and still it can suck for everyone involved. It can. We work a tough cliental.

I tried for five years but I was getting tired. I wasn’t enough especially towards the end of last year. I take my hat off to all home schoolers really I do. Now to cover all facts of the story and further justification for me saying motherhood can suck. What about day care? I used day care for two years when I was at my most tired for one day a week but because we no longer qualified for subsidies I could not justify the extraordinary money we paid, so I dropped it and things although easier became hard again. Again my decision. I am not complaining, I am explaining there is a difference at least in my head.

Fast forward to today me in my kitchen baking a cake because you know I have the desire and time. I have two kids in school one at kindy. They can do stuff for themselves because of good training I like to think and they do stuff for me including their own washing I’m not boasting just saying it can be done. The house is clean. The washing is done. I’m baking cakes and I am happy and so are the kids. I am not saying they were the problem no they weren’t but it was me doing it all on my own meant it was not fun any more. Being a mum was not cracking up to the romantic notion I had in my head. Nothing was or seemed easy; now it is. It really is that simple.  Now they come home from school; we have afternoon tea and eat things I baked for them and I listen to them about their day and they ask about mine. I’m doing this motherhood FIFO gig better than ever; homework and all.

She was right my friend it does get easier. I’m still a full time mum. I’m still a full time fifo wife and I’m still doing everything but its okay. I’m okay with that because in between the stuff I have some time to breathe catch my breath. I can go to the toilet on my own. Wear white from 9am-3pm without fear of getting hand prints around my bum and going to town like that and I can finally stop reading my books by torch light. So all of you who roll over and think great another day of cleaning Weetbix off the wall. It gets easier. Truly it does. Trust me I wouldn’t be off to bake my husband a cake if it didn’t.

xx Deb