Experience relayed from patient to parent.

A couple of weeks ago I met baby Matilda and her mum Cheryle at the Royal Children's Hospital. Cheryle and I have become friends very recently - Matilda is a newborn baby with Ichthyosis. Cheryle has been reading my blog for a while, after a search for Ichthyosis support groups. She's connected with a lot of other mothers of children with Ichthyosis world-wide, too.

When I met Matilda and Cheryle, Matilda was nine weeks old. She's not yet been diagnosed with a specific variation of Ichthyosis, and she was in hospital for an infection. They were far from their family, and Matilda is too little to articulate how she is feeling. I knew that this transition to life with Ichthyosis would have been overwhelming for Cheryle. So I offered to stop by the ward for to give them some company.

I was there for an hour, and we talked a lot. A little about Ichthyosis, a lot about life as a whole. Cheryle went to warm Matilda's bottle, unexpectedly putting Matilda into my arms. She was crying to start with, but after a few minutes and walking around, she became settled, snuggling into my chest. (I told Cheryle that was hoping that she wouldn't spew up on my shoulder as I had a brunch date immediately afterward, hah! Lucky Matilda didn't!) It was lovely. I looked at Matilda with so much hope and wonder, knowing she's going to change the world.

Matilda is so precious - a tiny little girl (she's having trouble putting on weight - failure to thrive is a trait of Ichthyosis), with fragile skin on her face and body. I wondered how much it hurt when I touched her. I was very gentle.

I've not met many parents of children with Ichthyosis in person - only Julie and Danny, parents of Jack, but I have met quite a few online. I hope to show them a positive example of an adult living with the condition, give them some hope for their child. But I am always mindful that (like me) they're taking things one day at a time, and they are not sure what to expect with such a rare and severe condition that's probably unexpected. I hope not to be unrealistically positive, especially when it's likely they're experiencing a sense of grief and fear of the unknown future. I always say "life will be hard but it will be ok", and I firmly believe that. It has been that way for me.

My awesome new friend Jax, (who writes amd reads beautiful poetry about disability) has started to connect with children with Cerebral Palsy, and their parents. She said this recently:

"I am saying to the parents, I dont have all the answers, but I have passion and am willing to explore things with you and that know that for me disability provides the chance to live an interesting life, to meet different and intriguing people, to see the world and people from a different perspective and to be in a body which is very much unique."

I feel exactly the same way when I write about life with Ichthyosis, and especially when I engage with new parents. Thanks Jax for writing what I feel.

Jax, Cheryle and Matilda have given me some inspiration (and confidence) to offer my services as a contact for parents of children with Ichthyosis, and perhaps other young people. This week I am visiting my former dermatology nurse at the RCH, and talking to the group of dermatology nurses there, as well as being a contact for parents.

Cheryle wrote about my visit:

"You have been an amazing support for us, and showed me despite how scary and frightening this is right now she is going to be an amazing young woman with a bright future despite her visible difference. If you can share that with only a 1/4 of the parents you meet it's an amazing thing."

I think it's really important for parents to have some support from adult patients with rare conditions - we've experienced a life of both challenges and celebrations, and often know as much as doctors and nurses specialising in treatment of our conditions.

Like Jax, I don't have all the answers. I can't tell you what creams will cure your child or even how to handle bullies.

But I can tell you how the condition makes me feel - how my eyes get stringy and that sometimes a good sleep in a warm bed is just what I need to calm my skin when it's sore, and that I love waking up each day knowing something good is going to happen. I can tell you that instilling a sense of self-worth and self-belief, resilience and the courage to dream in your child is as important as all the medical treatments you all go through. And I can tell you that life with a visible difference can be a blessing.

Matilda is a beautiful girl and I hope that when she's old enough, she'll pick up the phone to have a chat. We can chat about Ichthyosis and we can chat about lots of other things. I wonder what my life would have been like if I'd had an adult role model with Ichthyosis when I was a child?

If you'd like to get in contact with me to ask me about life with Ichthyosis, you can send me a message on Facebook or via email.

 

Blog home

 

Homegrown - whole foods, Theatre of Ideas at Melbourne Food and Wine Festival and sausage making.

I've become really conscious about what I eat. I haven't become a diet fad bore, cutting out total food groups, but I am keen to cook and eat whole foods where I can. I love the simplicity of fresh produce - it's so tasty and I really do feel better for eating it. I also really love knowing where my food comes from. I get excited talking about food, especially when I find out people have grown their own. One of the managers at my day job brought in the blue chicken eggs, below. They were laid by Lavender Araucana chickens. The camera didn't pick up the true colour of the eggs, but imagine a pale Tiffany blue.




Earlier in March I was a guest at the Melbourne Food and Wine Festival's Theatre of Ideas. Hosted by chef-journalist Jill Dupleix, the Theatre of Ideas featured three farmer-chefs talking about their passion for sustainable food, small scale production, mindful eating and powering the body and brain with wholefoods. In summary, they discussed the journey from earth to table, highlighting the change we need to make to our producing, sourcing and eating habits.

Canadian Michael Stadtlander talked at length about his farm, restaurant and bakery (read a great article about him here). Michael owns and operates Eigensinn Farm and Hasai Bakery. The Theatre of Ideas showcased Michael's restaurant sculpture projects. As well as raising and growing the produce on his farm, he creates thematic sculptural gardens and kitchen areas for dining and food preparation. He and his team created hand potted plates, a treehouse and a giant wine dispenser made of recycled wine bottles. His ideas are lavish, a little outlandish, but very interesting. He believes heaven is on earth and demonstrates this through his food practices.

Next up was Matthew Evans, former food critic turned Gourmet Farmer, based in Tasmania. He hopes there is a shift in conscience in how we source food, and encourages the average person to "have a crack" at growing their own produce. He moved from Sydney to Tasmania, on a 12 hectare farm with a garden, pigs, a house cow and sheep. He now also has Fat Pig Farm - an industrial farm with 40 pigs, 16 cows and 12 sheep, plus a mobile food caravan which he takes to food events. He believes farming is an art, and said it is important to showcase Indigenous people, the older generation and real farmers on TV because they understand the complexities of the earth and food producing. It was interesting to hear him speak about his passion for fresh produce and flavours - he said "if you can source good produce, cooking is really easy."

Both Michael and Matthew spoke about death being the hardest thing about farming. "I had no idea how many animals die for us to have commercially grown food", Matthew said. "Death is grim. It makes me feel like a failure when baby animals die", he said, noting that he is against hunting as a blood sport. Jill Dupleix assured him that being sad about death on a farm is healthy for a mindful farmer to feel.

Swedish Chef Magnus Nilson spoke last - he spoke about the unsustainability of meat production. I had to leave part way through his talk for the Rickshaw Run.

I met Matthew over a glass of champagne in the media room - I spoke to him briefly about my love for fresh produce and learning about the food journey.

A few bloggers were in attendance, including Bern Morley, Heidi Apples and Gourmet Girlfriend (you have to check out her bread challenge on her blog and Instagram (follow the hashtag #ggbreadrevolution - it warms my heart that she's encouraging people to make their own bread!).

I came away from Theatre of Ideas feeling inspired to eat fresher, more mindfully and to go to more food lectures.

I thank the Melbourne Food and Wine Festival for sending me along to this event.

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Over the past two weeks I've been making smoothies for breakfast - green (or orange) and fruit/dairy ones. Some of the great combinations have been spinach, pineapple, celery, grapes, lemon juice and mint, and an awesome pumpkin pie smoothie, inspired by this recipe. I cooked some pumpkin and a carrot in the microwave, chilled it overnight, and added cardamom, cinnamon, nutmeg, vanilla, maple syrup, a couple of dates, nut butter, chia seeds, a frozen banana and rice milk. It was so delicious!

This long weekend I went home to my parents' house in country NSW. It was blissfully relaxing - spent reading (Jodi Picoult's The Storyteller - engrossing, heartbreaking and beautifully written), napping and cooking and eating. We went to the farmer's market - smells of bacon and egg rolls and hot coffee and children's laughter filled the air, and we bumped into old friends. I bought some brioche (beautiful toasted with butter and eaten for breakfast with a berry and peach smoothie) and boutique cordial made my former paediatrician's wife, and a hand-potted bowl from the adjacent art gallery.

In the afternoon, my parents and I made sausages. So much fun! Mum and Dad recently went to a sausage making class, and although they had previously made sausages in their old Breville mixer, they learnt some tricks of the trade such as ensuring the air pressure is ok and professionally twisting and looping the sausages. Dad's really big on buying things on eBay, and he bought a sausage making machine last week. It's a simple contraption - a heavy metal body, barrel to hold the mince, a handle to feed the barrel across the body, and a number of nozzles for different sized sausages. (Photos courtesy of my Dad.)

Mum prepared the mince the night before to maximise flavour - fresh local pork amd suet - minced up in the food processor, roasted herbs and spices - soaked in wine. The sausage skins are natural, and there are no preservatives.

When I was young, I didn't appreciate the process of making (not cooking) food. My parents bottled homegrown fruit, grew rows and rows of vegetables, collected eggs from the chicken coop, made sausages, and raised chickens and sheep for meat. I just thought we should buy food ready to eat from the supermarket, as often the hard work made my parents swear, and tending to the garden and animals in the dry heat of summer was arduous for them. But now I see the pleasure in the homegrown. Making our own food tastes better. The ingredients are known and often grown with care. And it brings us together. It's fun! I enjoyed making sausages as a family - we laughed, taught each other and were proud of our efforts.

I had fun feeding the sausage out of the nozzle, ensuring it was a consistent thickness.

My completed sausage was around 1.5 metres, almost as tall as me! Mum showed me how to twist the sausages in alternate directions so they'll hold when cut.

And last night I had some of the sausages for dinner, with roast vegetables and steamed greens, followed by a tart filled with pears in vanilla, maple and ginger sauce. All made fresh from scratch - thanks to Mum for the pastry, and to Camille's sister Rachael for the herbs.

Plated up! Really tasty.

Honey, I baked! The tart had sweetness and zing, and I served a piece of it with a dollop of Greek yoghurt.

For me, cooking is a way of life. I feel better for knowing what's in my food. I ate a burger from McDonalds on the bus trip back to Melbourne. It tasted strange - artificial - and I regretted it. Eating whole foods feels so much better.

The Summer Fire Safety Campaign: My parents' bushfire story.

This post is sponsored by the Victorian Government's Department of Justice.

 

It is my parents' 32nd wedding anniversary today, so it's fitting that they've written pieces for this blog post. Happy anniversary Mum and Dad. 

I was asked by the Victorian Government's Department of Justice to write a blog post on bushfire safety. I am a city girl now, but bushfires have come close to my parents, so I've let them tell their story.
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I grew up in country New South Wales – the summers are hot and dry. The scenery of my youth was gum trees, dirt roads and paddocks. Farmers burnt off in their paddocks. Smoke wafted from the incinerators at the local rubbish tip. I learnt a little about fire safety at primary school, but I never had to put the “stop drop and roll” lesson into practice. We were always safe. We had been very lucky with not having any bushfires nearby. Bushfires were always somewhere else, they never happened to us, but the smoke blackening the sky served a stern reminder to take precautions.

Back in 2009, when I first started writing this blog, I wrote this post about how close bushfires came to my parents, dogs and house. On 17 December 2009, I received an email from a colleague who works in the Albury office of my organisation. There were bushfires in Gerogery, she said, and were my parents ok? I panicked. I thought about the destruction and tragedy the Black Saturday bushfires had caused earlier that year – how quickly they moved and how many lives were lost. 173.

Another email came through. Were my parents ok? What about their dogs? They were at home in their run, no where to go. My parents were at work in Albury, 20 minutes away. My parents are diligent in ensuring their house is clear of trees and debris, and the grass is kept short, but others surrounding them may not have been as fire ready.

I called my parents, phones rung out. Power was out in Albury because of storms, and I couldn't get onto my Dad. The phone at my Mum's work rang out, again and again. I rang her best friend at work, panicked. Did she know there were fires in Gerogery? She didn't. She left work straight away. I rang my parents' next door neighbour. He was asleep, off work sick. He wasn't aware of the fire nearby until I called him. He went outside and saw the fire, a few kilometres away. He was safe, and our dogs were too. I finally got onto my Dad, on his mobile. He was stuck in traffic on his way home. Here's his story.

 

“It was a hot day with a wind and a sky that I've never seen since.

One of my work colleagues alerted me to the fire close to where I live.

I hopped in my car immediately & headed for home. First I had to encounter the northern suburbs of Albury where wind had strewn the road with debris. Traffic lights were out & there had been a car crash. Police were directing traffic but it was chaos.

I got through & raced out of town towards the fires. I was trying to phone my wife at the same time to let her know of the danger.

I kept to the speed limit but I had an impatient local behind me racing to take up his role in the local fire brigade.

Once home, I met my neighbour at his front gate. He was drinking a stubbie of VB with a mate of his & it wasn't long before I was joining them.

We watched the plumes of smoke & the planes that were backwards & forwards with loads of water to drop on the fires as we listened to the CB radio.

Our discussion was about whether we should go or stay & what if we were over 0.05.

We stayed. The emergency message came up on our phones to evacuate but at the moment the rain began to fall. We stayed.

Reflecting on the situation, we didn't know how close the fire was or whether we could get down the road to escape. We had an artificial feeling of safety where it could never happen to us.

Our dogs were our prime concern but all was well.

The fire scene was cordoned off & it was only several days later that we realised how lucky we had been.”

My Mum writes:

“The day started with very hot and strong winds. I went to work as normal and as the day progressed the winds got worse. At about 1.30 my daughter Carly rang me to alert me to the fires burning in Walla Walla and Gerogery. I told her I would confirm this with one of my neighbours, but then Roger rang and told me he was home and I should get home immediately.

Driving home was the longest trip which normally would take about 25 - 30 minutes seemed like hours. The sky was a brown eerie looking trees were down and part of the major highway was closed due to debris on  the road. Listening to the radio it was said that roads to Gerogery/Walla Walla were being closed. I put my foot down and thought of what I was going to say, why I should be at home etc. The thought of the dogs being on their own and trapped came to mind.

I can't describe how I felt.....scared and worried.  The smoke  by now was getting thicker and it reminded me of the fog we normally have in winter. I needed to concentrate on getting home. My main concern was Roger, the dogs and our sheep. I finally got home and left my car at the top of the driveway just in case.  Roger and his car was parked at the dog run. Looking down from the dog run we could see thick smoke and flames....about 2km from our property. We listened to the police on the UHF radio and we found we were not in immediate danger, although if the wind changed direction, it could be a different story.

By this time my neighbour was out too,  hosing down his house and he was waiting for his wife to get home.

I came into the house, went through the motions of collecting things to put in the car.....bottles of water for the dogs, change of clothing for us, laptops and mobile phone... I did however feel like I was in another world, I can't say I panicked but the feeling was very eerie......

For about three hours we were watching the wind and flames feeling useless, should we stay or leave and the rains came and it poured......relief. By this time we received a message telling us to evacuate and meet at the nearest petrol station. We felt we were safe then.

We watched the news that night and realised how ferocious the fires were and how many houses were lost. How nobody died was a miracle.”

The bushfires in Gerogery destroyed five homes, burnt out 7,000 hectares of land and killed 115 head of cattle and 1,200 sheep. It started at the Walla Walla rubbish tip. An original news article can be viewed here. 

My parents were so very lucky. That day taught them to be more vigilant with trees and debris on their property, and they have had ongoing discussions about whether they are prepared to stay and defend, or whether they will leave their home should a bushfire happen again. 

 

Summer Fire Safety Campaign

 

The Victorian Government's Department of Justice is coordinating the Summer Fire Safety Campaign which aims to increase Victorians’ preparedness to respond to the threat of fire.

The most common myths in relation to fire are:

MYTH: Code Red days happen all the time.

FACT: Code Red days are rare. There have been two Code Red Days in the last three years. Code Red is the highest Fire Danger Rating. Houses in Victoria are not designed or constructed to withstand fires on these days.

My parents (on the border of NSW and Victoria) have only experienced two code red days in the last three years.

MYTH: It will be safe to leave even if I can see fire.

FACT: Roads might be blocked, thick smoke will make it difficult to see, the fire could travel faster than you drive and fires can leap highways. Every minute you wait, it gets closer.

MYTH: CFA will be able to send a fire truck or come to my rescue.

FACT: If the CFA is fighting fires, they can’t be knocking on doors. It’s your responsibility to make the best possible decision for your family based on the current Fire Danger Ratings and official warnings for your area. It’s up to you to know when to leave.

TRIM ID: CD/13/37203 Page 2 of 7Summer Fire Ready 2013 Fire Myths Kit

It is critical for your safety to check more than one source for warnings. On high-risk days, monitor the conditions around you. Get the most up to date information through:

• cfa.vic.gov.au

• FireReady App

• Emergency broadcasters: ABC Local Radio, commercial radio and designated community radio stations

• SKY NEWS television

• Victorian Bushfire Information Line: 1800 240 667

• CFA social media such as Facebook and Twitter: @CFA_Updates

• You may also receive an alert sent to your landline or mobile phone based on its billing address or location (for Telstra customers only) through the Emergency Alert System.

MYTH: I can easily defend against fires; I am prepared and have experience.

FACT: You can’t prepare for all fires. You need a well thought-out bushfire survival plan which has been agreed and discussed with members of the household. Leaving early is always the safest option.

MYTH: Fire Danger Ratings are just a weather gauge.

FACT: A Fire Danger Rating tells you how bad a fire would be if one started, including how

difficult it would be to put out. The higher the rating, the more dangerous the conditions.

MYTH: Winter has been very wet so there’s less chance of a fire in summer.

FACT: Rainfall fuels the growth of vegetation, especially grass, creating more fuel for fire. In years of wet weather, Victoria often sees an increase in the number of large grassfires. It only takes two weeks of hot, dry and windy weather to create dangerous fire conditions.

MYTH: All barbecues are banned on a Total Fire Ban day.

FACT: Solid and liquid-fuel barbecues and ovens are banned on Total Fire Ban days. You can still use gas or electrical barbecues that are fixed appliances – built into permanent structures of brick, stone or concrete – provided you adhere to the guidelines for use located at http://www.cfa.vic.gov.au/warnings-restrictions/can/. Portable gas or electric barbecues are also allowed if they are commercially manufactured exclusively for meal preparation and you ensure they are in a stable position when alight.

MYTH: If we do decide to leave early, we will be able to go to the local Neighbourhood Safer Places.

FACT: Neighbourhood Safer Places are places of last resort only when all other plans have failed, and do not guarantee safety. They are sometimes just an open space (e.g. a football oval) with limited facilities. There isn’t a Neighbourhood Safer Place in every community.

For additional information, please refer to the following:

Country Fire Authority (CFA)

Website: www.cfa.vic.gov.au  

Facebook: www.facebook.com/cfavic 

Twitter: www.twitter.com/CFA_Updates

Metropolitan Fire Brigade (MFB)

Website: www.mfb.vic.gov.au  

Facebook: www.facebook.com/Melbourne.MFB  

Twitter: www.twitter.com/MFB_NEWS

Department of Sustainability and Environment

Website: http://www.dse.vic.gov.au

Facebook: www.facebook.com/DSEFirefighter  

Twitter: www.twitter.com/DSE_Vic

Presents!

Yesterday when I went to visit my friend and her son at the hospital, she gave me a large bag filled with presents from my parents! Yay!

My parents were recently holidaying in Tasmania (again!). They bought me some hand made goodies as well as some cute and functional towels (I don't think I've ever bought a towel - they all get given to me!).

My parents know my tastes very well. Thank you Mum and Dad!

This is what I received.

Two cute guide dog towels and a plain towel.

We used to buy a lot from the Guide Dog Association when I was a kid, but I don't think they have an extensive range anymore. I love these towels.

A hand spun hat from Spindle Tree at Salamanca Place, Hobart. These colours will certainly brighten a winter's day!

A hand crafted leather belt, made in Tasmania. I don't have many belts, so this is very useful!

And the cutest chicken felted brooch from Spindle Tree!

So adorable!

Tasmania is such a creative place. I miss it and want to visit again soon.

Thank you so much for these presents - I feel very special and spoilt! I love you Mum and Dad :)

(PS: Don't forget to enter my giveaway!)