The importance of support groups - Australian Ichthyosis Meet

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I will never forget what it felt like to attend my very first convention with the Short Statured People of Australia. It was back in the August/September school holidays in 1980 at a campsite near Ballarat. It was freezing cold, the accommodation was budget but as a thirteen year old I HAD THE BEST TIME OF MY LIFE!

How can I even describe the feeling of spending an entire week with people who could relate to what it felt like to be me? It was wonderful to make friends with people who were not only my own age but the SAME height as me. For one whole week I wasn't the different one in the crowd; I wasn't an oddity. No one stared, no one made comments. I talked with people face to face, eye to eye. I got to meet adult people of short stature who had successful careers, were driving and even PARENTS! I got a glimpse into my potential future and was assured that everything I hoped for and dreamed of could happen if I set my mind to it.

I made lifelong friends at that convention. I would even go as far as saying that being connected to the SSPA changed my life.

So when I heard that my friend Carly Findlay, with the support of the Genetic Support Network of Victoria was undertaking the mammoth task of organising the very first Australian Ichthyosis Meet I was incredibly excited for her. As a part of Ichthyosis Awareness Month, the Meet will take place on Saturday 9th May, 2015 in Melbourne. There will be an informal meet and greet, a trip to the zoo and a dinner to help cement friendships even further. Two dermatologists will be in attendance to answer the myriad of questions that are sure to crop up!

I am so excited for everyone. There is just something so wonderful about bonding through a shared experience of difference. It's where you start "getting your pride on". Lifelong friendships are formed, experiences are shared and questions can be asked of medical professionals that one may not have otherwise have access to.

If you have any questions about the Australian Ichthyosis Meet, please email Carly Findlay at ausichthyosismeet@gmail.com.

Carly is doing some fundraising for this important event to cover the cost of the GSNV Staff and photographer and to reduce the cost of zoo admission and transport for attendees. If you would like to contribute, please head over to the Australian Ichthyosis Meet fundraising page on gofundme.com . Any contribution you can make will be greatly appreciated.

For more information about Ichthyosis, please visit Carly's blog. You can also read more on the Ichthyosis website.

Nose to the grindstone

In a very random move I went back to work this week. Actually, no. I lied. It wasn't random. It was very much planned. Government departments in their infinite wisdom scheduled some meetings with us on the Tuesday and Wednesday of the week I was supposed to return to work so I decided to cut my holiday short in lieu of those two days so I could keep the appointments.

It's a good thing I came back early though. I was starting to get a wee bit.....what's the word? Bored.

Really? Me? Bored?

Yes. I was. I never thought it would happen. Me; the woman who says there's no such thing as being bored, was bored.

Thinking about it though, maybe I wasn't bored. I think I had too much time on my hands and with a few major events that happened over December and then all the busy-ness of Christmas, the quietness that followed was a little too much and I found myself descending into a bit of a dark place that wouldn't be relieved by lots of knitting and a Game of Thrones marathon.

I have a truckload of things to do at work which makes me so very glad. It keeps my mind occupied and fuels a sense of purpose again  - something I seemed to lose with moving out and no longer being "Mama".

Now what?

I'm at the kid's place getting some washing done. We don't have a washing machine at the new digs yet so it's a case of waiting until the pile is big enough and then heading around here to get it done. I should hand wash, seeing that it's summer and all, but....no.

Days have taken on a somewhat lazy, surreal feeling. I'm still struggling to work out what this new role is and I guess it's been harder given that I'm also on a month's leave from work so don't have a regular schedule to keep, nor a specific role to fill. I've finished a season of In Treatment, two seasons of Game of Thrones and completed several knitted squares for a blanket I decided to make. My housework is normally finished by 11am and then everything done in the evening by 8pm.

Now what?

They don't really tell you about this end of parenting; that place where they're all grown and you look at each other and say, "Now what?"

I know there's a whole new world out there just waiting to be explored but how can you explore when you're still only just finding your feet and battling with the inexplicable guilt that you should be inviting your offspring places you're thinking of going or checking in with them to see if they need anything? I know that this too, shall pass but whilst I'm in the thick of it it's a very confusing and, dare I say it, lonely place to be.

I miss them. I really do. I know they're doing quite well without me, thank you very much, and my heart rejoices at the thought of that. Truth is, I'm the one struggling with it all, not quite knowing what new planet I've landed on. I've been some kind of mother since I was 19 years old. It's been strange kind of not being one all of a sudden.

Was I ready? Heck, truth be told I really wasn't ready to be a mother when I first became one, but I've always been good at being thrown in at the deep end and working out how to swim, so I guess I'll work out this aspect of it all too.

Road Trippin' Home

Dad, Mum & Maya - McLoghlin's Beach. Jan 2, 2015

I do enjoy a little spontaneity now and again. Yesterday, on a whim, I decided to toss a few things into the car and head off down the South Gippsland Highway to visit my parents.  For some reason I was really feeling the pull of home. Despite the fact that we left the area in 1974 I still have this sense that the place of my birth is still "home" and it has nothing to do with the fact that my parents have moved back there. Now and again I feel an innate sense that I need to go back there to feel the soil, sand and the sea air. I hop in the car and just go. This was the first time I went on my own.

I wonder why I feel that tug now and again? Does everyone feel it? Is there a place that each of us longs for? You know, I don't even mind that most of the people I knew from my childhood are no longer down there and have moved on. I just love the area, the smells, the feel. I can drive those roads and they're so familiar, so comforting. I drive through the streets of the town of my birth and I marvel that even though things are more modern, everything still feels the same. Nothing has changed beyond recognition and it is all so familiar and so comforting that I feel as though I have been enveloped in a warm blanket each time I go there. It's as though I know exactly who I am, where I've come from and, strangely enough, where I am going. I come back to my current home and it's as though my tanks have been refilled. I'm refreshed and calm and have a sense of my place in the world again.

Yesterday was a best day and I've needed a best day for a while. I'm kind of struggling with this new "Mum but no longer Mum"status and have felt a little disenfranchised - still having the title "Mum"but no longer having the responsibility that comes with that word. I know that this is simply a natural progression of life and my mothering journey, but instead of all my chickens flying the nest slowly over time it was this Mama Bird that flew away, starting a new life. It happened suddenly and although I (and they) know it was a right decision, I am still wandering around kind of lost, not quite knowing what my role is. I know it will all work out with the progression of time and that soon this "new life"will just be life, but right now it's all very strange and confusing.

I think that is why I needed to go home. I needed to once again walk in the place where life began for me. I needed to connect to my roots so that I could feel grounded again.

Since getting back last night I've felt calm, safe, connected. I feel my strength renewing. I'm looking forward to the blank canvas that is 2015.

2014 - The year in review

Again, apologies for not blogging for weeks. I kind of lost myself there for a while....and I haven't had access to a computer on which to write! Since moving out I have relied on my phone for all things internet related and with the lack of wi-fi I've succeeded in using up 95% of my data allowance with seven days to go before it clicks over. Hence, the silence.

Since Stella's Memorial in December I have been quietly reflective about everything. The day after the memorial I went and purchased Clare Bowditch's CD and listened to her song Are You Ready Yet which she performed at the service. Reflecting on the words of that song strengthened my resolve to move on to a brighter future filled with hope. It's what Stella would want. The memorial, although sad, was such a celebration of the beauty that was our friend Stella. Afterwards, we all danced like wild things in Federation Square, proud to be who we are and proud and grateful to have known such a wonderful soul. Since then, every time I have heard Uptown Funk by Mark Ronson I've grinned like a silly thing remembering the shared love of all of Stella's friends that day and dancing without a care.

I could spend this whole post on what's been happening during my silence on here but I'm not going to. Instead, lets reflect upon 2014 with the traditional reflective questions, shall we?

What did you do in 2014 that you had never done before?

I ran a distance of 17km.

I interviewed TWO Hollywood stars!

I co-MC'd an event.

Did you keep your resolutions?

I don't make resolutions, instead I have a theme word for the year and try and keep to that theme. 2014's theme was ACTION - and I certainly actioned a lot of thoughts and plans! There was a lot of saying of the word, "YES"and just rolling with what happened afterwards. I found myself doing many new and exciting things - such as interviewing Peter Dinklage and Hugh Jackman, doing some public speaking and being co-MC for by workplaces 40th Anniversary celebrations. I met so many new and wonderful people whom I now count as friends and have developed so much more confidence. Putting things into ACTION certainly meant that my life has become more exciting and fulfilled!

Did anyone close to you give birth?

Yes, my sister and her husband gave birth to their beautiful daughter in January.
A friend and her husband also welcomed twin boys at the close of December.

Did anyone close to you die?

Our beautiful Stella.

What countries did you visit this year?

The kids and I took off to the USA and spent a week in Anaheim, CA to visit Disneyland for Chloe's birthday. We also took a bus tour of Hollywood, Venice Beach, Marina Del Ray.

What would you like to have in 2015 that you didn't have in 2014?

Honestly, I seemed to have everything I needed in 2014. I can't possibly think of anything more for 2015. I love simplicity, I love simple living and find that life is so much more fulfilling and meaningful when you reduce the clutter and concentrate on the important, the precious and the essentials.

What dates from 2014 will remain etched upon your memory and why?

December 6 and December 8. The day we lost Stella and the day we found out.

What was your biggest achievement this year?

I think my biggest achievement was becoming proud....and I didn't fully realise it until the end after seeing Stella for the last time and then hearing Bryce Ives read out Stella's favorite piece of writing "You get proud by practicing". It was then that I realised that for the first time in 47 years I am content, happy and proud to be who I am in this physical form I inhabit. This has been an enormous breakthrough for me which has been quietly and gently facilitated by the company I keep - the many, many beautiful people I have gotten to know who identify with and actively celebrate difference and diversity.

What was your biggest failure?

I guess the pie-in-the-sky plan to run to Adelaide! Was this a failure though? No. I don't think so. Is it possible? Yes. Is it wise? Possibly not. The jury is still out, however I am still contemplating an active something that will serve to raise funds...

Did you suffer illness or injury?

2014 was my healthiest year in a long time. No colds, no flu's, no injuries.

What was the best thing you bought?

I can't think of anything! Books?

Whose behaviour merited celebration?

All my kids. They continue to develop into the most spectacular adults and I treasure the time I spend with them listening to their discoveries and developing wisdom.

Whose behaviour made you appalled and depressed?

You know....I think I will delete this question for next year. Although there have been behaviours I have witnessed over the past year that have saddened me I am acutely aware that I am not the seer of all things and I can't begin to fully understand the inner motivations of people as to why they behave the way they do. I heard a saying once that we tend to judge others by their actions and ourselves by our intentions. In other words, we are quick to judge others on an action yet we cut ourselves slack because we know what our intent was. I'm working on trying to give people the benefit of the doubt.

......although our Prime Minister, Tony Abbott may be exempt from this benefit......

Where did most of your money go?

Rent and bills...and an overseas holiday!

What did you get really, really, really excited about?

My baby niece in January and the news of a new niece or nephew to arrive in June 2015!

What song will always remind you of 2014?

Cosby Sweater by the Hilltop Hoods
Uptown Funk by Mark Ronson.

Compared to this time last year are you:

a) Happier or Sadder?

Happier

b) Thinner or fatter?

Thinner with more lean muscle.

c) Richer or poorer?

Poorer

What do you wish you had done more of?

Weights and full body workouts.
Catching up with friends.

What do you wish you had done less of?

Grieving.

How did you spend Christmas?

Family Christmas was at my brothers house on December 20.
Christmas Day was spent with my husband's family and my parents at our place. Although it was busy leading up to the day it was a lovely day seeing everyone again.

What was your favorite TV program?

Game of Thrones - Season 4, as downloaded on memory stick by Akash!

What was the best book you read?

The Alchemist by Paul Cohelo.

What was your greatest musical discovery?

Lana Del Ray, particularly West Coast

Yeah, ok....I know there are people who think she's depressing. I love her.

What did you want and get?

Love, Joy, Peace.

What did you want and not get?

A new iPhone. (I got a Huawei instead)

What was your favorite film of the year?

I enjoyed Lucy and Interstellar.

What did you do on your birthday this year and how old were you?

I was 47 and I believe we went out for dinner.

What one thing would have made your year immeasurably more satisfying?

Secure employment for all my children.

How would you describe your personal fashion concept in 2014?

Confused hippy.

What kept you sane?

Running. Always running.

Which celebrity/public figure did you fancy the most?

Benedict Cumberbatch. That voice!

What political issue stirred you the most?

We had a state election in 2014 and for the first time I cared deeply about who got in and the impact it would have on future federal elections.  Cuts to aid funding and social welfare are alarming, to say the least and I have grave concerns for our future.

Who did you miss?

No one.

Who was the best new person you met?

Oh gosh! That's so hard! I met a lot of people through sad circumstances and wish so much I had've known them before this. I've also met so many lovely people through work. I can't pick who is the best new person. They are all wonderful and my life is richer for having them in it!

Tell us a valuable life lesson you learned in 2014?

Love people and celebrate with them whenever you see them for there may not be a next meeting. Tell people you love them, let them know how much they are appreciated. I am so very, very grateful that this was what happened the last time I saw Stella.