Where we experienced the true meaning of Christmas

I realised just the other day that this has been the first year since 2005 where I have walked through December 18 without a thought about the day or the date. No PTSD, no flashbacks, no heart thumping in my chest. Having started this post though I have to admit to feeling some anxiety as I remember but it doesn't hold the trauma it once did and for that I am grateful.

December 2005 was the time our Chloe had an anterior fusion of a lumbar kyphosis. In laymans terms that means that she had surgery on her back where an outward curve was slightly straightened and stabilised with titanium rods and screws. Yes, it's as big as it sounds. After a week of being in hospital they encased her torso in a plaster cast and sent her home for Christmas.

Those days she was home were not fun for her. I won't write all of what happened but by December 18 I was concerned enough to bundle her into the car and drive like a madwoman up the Monash to the Royal Children's Hospital. The staff took one look at my pale, grey girl and rushed her into Emergency.

The cracking of plaster to reveal a horribly emaciated Chloe, the strangled, "I can't!" when encouraged to take a deep breath, the colour of the carbon-dioxide laden blood they took from her, the hiss of the bi-pap as they forced oxygen into her, the X-rays revealing a collapsed left lung filled with fluid and squashing her right lung which was displacing her trachea, the muttering of the nurse, "how is this kid still breathing?" Tubes being inserted here, there, everywhere. This mother holding her daughters hand repeating, "You can do anything! You can do anything!" like a mantra. 

These are the memories I have but choose not to write in detail because they still haunt me to this day if I dwell on them for too long. One thing about Emergency they don't tell you. The mother is invisible. The staff only have eyes and ears for the patient. Everyone else doesn't exist. For that I am so incredibly grateful...but as a mother, it's also incredibly hard.

I've never been so afraid in all my life...nor have I been so afraid since. Eventually things stabilised and we knew she was out of the woods when someone blew up a latex glove and drew a face on it. I knew she was going to be okay when her doctor looked at me in the face and assured me that she wasn't going to die.

Our girl was taken to the ICU where they drained a litre and a half of milky, pink fluid off her chest. Her breathing became steady and deep and for the first time in days she was able to rest. 

We weren't allowed to stay with her that night. There are no parents sleeping by bedsides in the ICU. Beautiful friends who lived nearby gave me a bed for the night but as soon as first light came I was out the door and back to the hospital.

As I entered ICU I was greeted by my girl. My Chloe. She was pink. I hugged her and she was deliciously warm. She looked at me and said, "Mum, I'm so glad this happened to me because if it had've happened to anyone else I loved I would've been so much more scared."

My Chloe. That whole statement just sums her up completely. We are so blessed by her presence on this earth.

Yes, we spent Christmas on the ward at the Royal Children's Hospital that year. How blessed we were! We were so touched by the hundreds of volunteers who gave up their own Christmas Day to be a blessing to families spending Christmas on the wards. Volunteers who handed out presents so generously donated, volunteers who lovingly prepared Christmas dinner for families and friends. Carol singers, celebrities, entertainers all making the rounds to spread some Christmas cheer.

Family members gave up part of their day to spend it with us on the ward. Our little room was filled with Christmas cheer as presents were spread around a miniature Christmas tree which slowly became buried. 

Some family members who were unable to visit gave up their time to serve others that day. My sister in law went out and helped out at a soup kitchen, serving Christmas dinner to those in need.

It wasn't the Christmas any of us ever expected, but it was a truly happy one and we felt so incredibly blessed. We were all acutely aware of the fact that we had dodged a serious bullet that year and were so grateful for everything that happened. Life is so precious...and we simply celebrated the gift that is life.

Chloe was released from hospital on January 7, 2006. She came home pink and well and wonderful. We captured her homecoming in a photograph that still adorns our fridge to this day.

I think their faces say it all.

Chloe is the one in purple.

*note: Chloe had experienced a complication known as Chylothorax. As the surgery had involved accessing the anterior side of the spine, the incision was made through the chest wall. Sometimes the thoracic duct is accidentally severed during this type of surgery causing lymphatic fluid or chyle to leak into the pleural cavity surrounding the lungs and heart. This is what happened to Chloe. After the fluid was drained & the tear allowed to heal by having a strict no-fat diet, she made a full recovery. * 

Light House

I've been silent on the blogging front lately. There's always a measure of guilt when this happens for the simple reason that I feel that if you intend being a blogger then you should commit to that somewhat and update at least once a week. Yes I do this for me, my own therapy...but I also do it to be read. I'm not going to deny that. Let's be honest, bloggers write to be read and if you're not going to write people aren't going to hang around waiting until you do - although I must admit I do tend to leave people on my blogroll even though it may be months before they update. I love their stories enough to hang around just in case.

Just because I haven't been writing doesn't mean I haven't been writing some kind of narrative in my head. I'm normally inspired when running. It's like my head clears out all unneccesary dross and begins to see things clearly. It formulates ideas and puts them into cohesive and interesting sentences, attaches photos and even films a video with accompanying inspirational soundtrack and VoiceOver. Silly really. 

Sometimes I wish I could be an observer of my own life, writing notes and putting them out there on this blog so that the "dwarfism awareness" message can be fully told. I guess I'm just busy with the actual doing of a very average life to spend much time documenting that for those people who have just given birth to a child with dwarfism. I know though that our stories - the stories of we adults with dwarfism living very average, "normal", happy lives - are vitally important to these people and their families. We are like lighthouses in the dark, showing them the way and assuring them that all will be well. 

And it's the fact that we live our "average" lives that is so reassuring. I don't really think they care about whether or not there are short statured people in parliament, or leading in their field of medicine or surgery, or the managing director of their Very Important Company. No. These parents want to know things like, "How did you learn how to tie your shoes, negotiate the playground, cope in a public restroom, drive a car, cope with people staring, conduct yourself in an interview?" They want the daily things, the mundane, the things that most people take for granted day by day. They're interested when I post a picture on Facebook showing the type of seat that I find the most comfortable on a train. They feel reassured when they read about me participating in a Fun Run along with 22,000 other Melburnians. They want to know where I buy my clothes and who alters them to fit me.

Over the past few weeks I've been reflecting on my past tendency to almost withdraw from life simply because I was tired of being noticed. I realised I didn't do myself, my family or the community any favours. The kids and I have discovered that since coming out of a "safe" private school environment and entering public school and a more public arena we receive less harassment and more friendliness. The more we're out and about, doing our thing, participating in community and public events, the better it is for us. 

I have become more confident as a result. In the past I would have been scared to participate in a Fun Run and would only reluctantly do so if I had company. Now I register because I love to run and I don't mind that I do it on my own. I don't care about what people might be thinking. Why was I once so presumptuous to believe that I knew what they were thinking? They could see me and think, "She's short. I wonder if she'll last the distance?" or "Good on her!" or "I'm glad I wasn't born like her!" or "Oh! Great haircut!" or they may even be looking right through me and are wondering what they'll cook for dinner. My point is, what does it matter anyway? I'm here! I'm alive! I love it!

And I guess that's the face I want to show to the world. I want to show the face of a person who is filled with more light than she could have possibly imagined, who lives and loves and adapts to a physical world that isn't always built to her specs. I want to show them someone who is getting out there and being "average" in a not so average body and ROCKING it! I want to show that I'm approachable, friendly, teachable and that I deserve respect in the same way every other soul on this planet does. 

I believe it's possible; in fact I know it's not only possible but is actually happening right now. 

Promoting Dwarfism Awareness just by being me.

Just hold the eggs

Our house was egged on Saturday night.

I don't like eggs at the best of times.

Evil little ovals of yuckiness! I mean, come on! Who was it who looked at what emerged from a chooks bum and said, "Mmm! Yummy! I think I'll eat that!" 

But seriously, yes our house was egged to welcome the first official weekend of Daylight Savings. It's not the first time and it won't be the last. Our house isn't the only one in town that endures an egging once the longer days are upon us but I think it's the most frequently targeted. 

For obvious reasons of course. Most hooligans know where we live and who lives here. 

This egging was a pain in the butt more than anything as it had been a warm day and we had the window open. The eggs were thrown at the window so they hit the screen, broke and went onto the blinds and the curtains. 

Little buggers.

It's gotten to the stage now where I just sigh, grab a bucket, mop and the hose and go clean it off before it hardens. Yes I've been to the police who have promised there will be more patrols but in the grand scheme of things I suppose eggings are not too serious in their opinion. They've got domestic violence and robberies and stabbings to see to. Totally understand.

We've had worse than eggs and times where they've entered our property and damaged our gates. These have definitely been reported to the police, who did actually step up patrols in the area.

I can't really tell you why I am no longer outraged or incensed or even hurt. Maybe I've just reached a stage of my life where I know that their actions reflect more on their character rather than mine. I know that we're targeted because we are a family of short statured people and the bullies think that's funny.....but for some reason I have moved on and it has no bearing on how I feel about myself and my kids and our place in the world. I know we belong and I know we're pretty cool people....and I'm sure that if these bullies actually swallowed their fear (because that's all it is, you know!) and took a chance to get to know us, they'd think we were pretty cool too. 

And I really wish they would do that......

.....because cleaning smashed egg off windows and brickwork is a bitch of a job.

Hey, where's your Mum?

Do I look like I need my hand held?

Sometimes just going out for a lunchtime walk is a lesson in funny. I really am learning day by day to look at the funny side of life. Actually, there are a lot of amusing things that happen every day - I guess it just depends on your point of view.

Last week I headed out at lunchtime for my normal daily walk. I like getting out of the office at lunchtime. It really clears my head and gives me a second wind for the big push to knock off time. Anyway, the weather was pretty nasty. There was a good, strong head wind...and I'm a lightweight so I was almost being blown over. Literally.

I noticed a local resident walking along as well. She was distracted and so I passed her on the footpath. I got about five metres in front of her when I heard her call out,

"Hey! Little guy! Where's your Mum?!"

She then proceeded to come a little closer to me and held out her hand as though she was going to take mine and lead me back to a safe place.

I was terribly amused. I turned and looked at her and it was at that point the woman realised her mistake. She was wrong on two levels.

1. I am not a guy. Yes my hair may be uber short but short hair does not maketh the man and I am most definitely a woman.
2. I am old enough to walk the streets without my mother, thank you very much.

She apologised profusely, but seeing the amused look on my face caused her to see the funny side of her mistake too. Luckily she became distracted by someone else at that moment and went on her merry way. Shame, because the response I really wanted to give her was:

"Umm.....I'm not too sure where my Mum is at the moment. Somewhere on the Nullabor I think!"

This is not an isolated incident. I've had times where I've answered a knock at the front door and when I've answered it the salesperson has said, "Hello there! Is your Mum home?" to which I have replied, "Yes, I think she's home....but she doesn't actually live here." I've chosen to see the positive side of this. Maybe I look younger than I really am! At my age this is a BONUS! 

I think the best story I have ever heard about a short statured person being mistaken for a child is the story about my late father-in-law, George.

*Whilst shopping at a Newsagent for a packet of envelopes, my father-in-law George (also a person of short stature) was standing at the counter waiting to be served. Standing alongside of him was a mother with a very unruly child who was screaming for an item his mother wasn't prepared to buy for him. In her frustration, the mother reached down thinking she was grabbing her sons hand and dragged him out of the store. Unfortunately she had grabbed George's hand by mistake and started trying to run with him. 

Her anger turned to mortified embarrassment when she heard an adult voice exclaim, "Steady on! I've often tried to pick a woman up but this is the first time a woman has picked me up!"*

Luckily George had a sense of humour too!

*story used with permission*

Dancing Ground Debrief

I took the wonderful opportunity of participating in Dancing Ground over last weekend. Dancing Ground is a not for profit organisation dedicated to promoting community through dance and movement. It is a family-oriented weekend that hosts many different types of workshops for both adults and children alike. You don't have to be a skilled dancer to attend Dancing Ground. You just have to bring a sense of adventure, fun and a positive attitude.

I'd heard about Dancing Ground through Lauren from Sparkling Adventures and it sounded like such fun I thought I'd give it a try. I was both excited at the prospect of participating and nervous about putting myself among a whole group of people I'd never met before. I asked if any of my family wanted to attend with me and thankfully one of my sisters put her hand up so I felt a little more brave.

We arrived at the Gilwell Park Camping Ground on Friday evening and was greeted with a community of colored tents draped with brightly colored bunting..

After registering and receiving our wristbands we drove further into the grounds to find a campsite. Even though the evening was approaching we decided to wait to put up the tent until we had some dinner. And oh what dinner it was! Beautiful, organic vegetarian fare prepared by New Earth Catering. It was delicious! As we were eating we were handed a small, green cord that we were supposed to bring along to the Opening Ceremony. I was hoping we'd be able to get there but we had to erect our tent before it was dark. I met Lauren and two of her lovely daughters - Calista and Delaney. It is so lovely to see someone you've admired for a while in person. I was really taken with the gentle, calm nature of Lauren and the girls. They really are beautiful souls.

Luckily it was still fairly light when we finished and we managed to erect our two-person tent quickly.

(This was taken the next afternoon)

We missed the Opening Ceremony unfortunately, so we never knew what we were supposed to do with the green cords. On reflection, I think Opening Ceremony would have made our introduction to Dancing Ground a lot smoother than it was as it may have fostered a sense of belonging. Instead, we headed up to the dancing space after the 5-Rhythms Workshop had already started and both my sister and I felt a little apprehensive and nervous about joining in. 

Sitting on the outside, looking in; wanting to join in so desperately!

With every fibre of my being I wanted to get over myself and join in. The music was calling me to just set everything aside and just dance with freedom and abandonment...but I felt conspicuous...very aware of my own physicality and difference. But I knew my awareness was with me only. All the other dancers were just entering into the spirit of things, letting their body move naturally to the feel of the music. I just stayed on the other. Miserable with myself.

Would I have joined in if I was on my own? Probably. I felt so self conscious. I also didn't want to leave my sister on the sidelines. Still, there was the promise of the workshops scheduled the next day.

We went to bed but didn't sleep well on the hard ground. Morning arrived and I woke with new determination to participate. I hurried up to the main tent to join in with the Hatha Flow yoga class and was so glad I did. The poses and stretches served to wake me up and promote a sense of calm. I was a little confronted when we had to partner up for a couple of exercises but the guy in front of me just turned around and partnered me without a bat of an eyelid. Again, I felt the sense that it was my own self-consciousness holding me back rather than the reluctance of others not knowing "what to do with me".

As my sister and I were preparing to head in to nearby Gembrook for a sneaky cup of coffee, we walked past the main tent and was attracted by the sound of the West Afro Dance Party Dance workshop with Sackey. It looked like such fun, so we decided we'd join in. I'm so glad we did! You couldn't help but smile the whole way through the 90 minute invigorating workshop. Sackey, the facilitator, brought a whole wealth of cultural experience from Ghana and his passion was evident and infectious. He got our whole bodies moving and the funny thing was that no matter how tired we were getting our bodies just kept wanting to move to the rhythm. We loved every second of it!

After coffee and lunch I participated in the Sound Healing workshop with Dave Holtz. Lauren had spoken about Sound Showers on her blog and so I was keen to investigate this for myself. I found Dave's workshop beautiful and relaxing as the sounds resonated around and through me. I felt myself drifting off a few times which was lovely but for the most part I reflected on my gratefulness for the life I have now and the journey I've taken thus far. 

Contemplating under the trees.

We didn't stay for the rest of the Festival; deciding instead to pack up early and return home. Although I was disappointed I knew I had participated in the workshops I was really interested in and it was the time to exercise unselfishness and compassion. I felt peaceful about leaving. 

I would like to attend Dancing Ground again. I feel as though I have more to learn, more to confront within myself. I learned that I still have a way to travel on this journey towards self acceptance and self love, that I still struggle with being judgmental, that I am still working out who I am and that I struggle with my own physicality rather than actually being judged by others for it. 

I've learned that I am more brave than I realised, fitter than before and that I am still loved wholly by the Creator of the Universe. 

Being inspirational/encouraging/heroic - take your pick.

Image source

I find living on the fringes of the disabled community confusing.

There seems to be so many rules to navigate, political correctness to adhere to. Some are fine with "this" wording, some are not. Some believe it's good to see the person and not the disability, some seem to want their disability to be seen right out there loud and proud. Fundraising for the disabled can be seen as good, but on the other hand some see it as condescending and a message that the disabled need to be helped to get by. Like me as the person I am but for God's sake, don't call me inspirational because that's condescending...apparently.

See what I mean?  If I'm confused and I'm kind of "in the club" I imagine that the "non-disabled" would be walking around on eggshells constantly. I imagine the internal questions would run as follows:

"Do I look at them or not?"
"Is it okay to ask them about their disability or not?"
"Do I offer help?"
"Is it okay to tell them that they inspire me or will that offend?"

Apparently, to some, it does offend and I am at a loss to work out why.

When someone tells me that I inspire them I am touched and humbled. Humbled because, on the surface, I don't feel as though I am doing anything great to warrant such esteem. I carry on a regular life, work a job, pay my bills and taxes, love my kids, get annoyed with my kids, do my shopping, drive my car. I work on my physical fitness, I try and better myself through reading and introspective soul searching. Nothing more than any human being would do on a regular basis.

But maybe these kind people see what I choose not to - and note that I said CHOOSE not to, for to dwell too much on these things would possibly send me down to a place I don't want to go. I'll admit that. Our specialist once told me that one child with a difference/disability/medical problem in a family puts an extraordinary amount of pressure on a parent and within the family. Multiply that by four and you have super-extraordinary  pressure. I never wanted to look at that. I never wanted to admit that, for fear that I would give my amazing children the message that it was all too much - and it was NEVER too much because my whole attitude has been that I must be strong enough to be their parent because otherwise this challenge would not have been appointed to me.

But it is a super-extraordinary amount of pressure, and work to be done, and hurdles to get over...and we do. Together. And maybe that's what people see and are inspired by it. And we do it despite and in spite of what gets thrown our way. Yes there are times where getting out of the car and entering a crowded shopping mall is a challenge. But what's the alternative? Think about it for a minute.... What's the alternative? Sit at home and watch DVD's all day? Hide away and not get out and about? Online shopping?

Stuff that.

So we face the challenge and we get out there and participate in life. I lift motorized scooters into the boot of my car, I carry people across sand so they can enjoy a day at the beach, we hang heavy shopping bags on the back of wheelchairs, we put up with rude people on occasion......actually more than on occasion. We put ourselves out there because life is ours and it is there to be enjoyed - every single wonderful second of it.

And while we're putting ourselves out there we are also "inspiring" people - and that's a good thing. A really good thing. "You inspire me" is not a dirty phrase in my book. If we have encouraged others to get out there and live your life just by the fact that we get out there among "you all" and live our ordinary lives then I am happy. Deliriously so.

So, contrary to the political correctness that seems so important with "my mob", I'm not going to jump down your throat and accuse you of being "so condescending". I'll probably thank you....and go away and feel inspired by you, knowing that the world really is made up of mostly nice people who just let us get out there and be ordinary.

Making lemonade

Image source

No, this is not a home-making post, so if you're looking for a recipe for delicious homemade lemonade you'll be sadly disappointed. However, if you happen to know of a good lemonade recipe, I'm all ears!

Our house was egged yesterday. Again. Yes, it's happened before and it will happen again. Actually.I'm expecting another onslaught today sometime. It is still the weekend and the neighbourhood kids are bored. Heaven help us when school holidays start at the end of the week!

Our attackers are rather bold. They will do it at any time of day, circling the house on their bikes and calling out the "m" word. I filmed one of them on my phone yesterday. Evidence I guess.

I'm choosing to act in love. I greet the boys and tell them my name so hopefully one day, when they get bored with what they're doing they'll choose to get to know me rather than attack us simply because of our genetic condition. Human behaviour truly baffles me. We reduce ourselves to the animalistic instinct of picking on the different, the weak, the infirm, knowing full well we are doing so rather than acting based on the instinct of survival of the fittest. This is what the animal kingdom is genetically engineered to do. Human beings were designed to do things differently to animals. Unfortunately some human beings are unaware of this fact.

I'm choosing to rejoice in the fact that the front windows of our house are sparking clean now that I've washed the eggy residue off. I'd been meaning to wash the windows for the longest time. There's nothing like the smell of rotten egg to stir you into action!

I'm choosing to not let these boys know they're actually getting to us, that their actions hurt. I'm choosing not to react in ways other than making our environment clean and safe. If I discover where these young boys live I will inform their parents, but that will be my only retaliatory action - unless of course the missiles become dangerous objects; in which case I'll be going to the police.

This is one small aspect of living with difference. It's typical, it's annoying, it can be disheartening; but I choose to remember that it is only a minority of society that chooses to act this way. The rest just let us be. I choose not to define myself based on the ignorant actions of others. I know who I am and it makes me wonder if our attackers are happy with themselves and their lives. Their need to attack others simply for being different from them seem to suggest otherwise.