The first five

I find myself drawn to the first five photos in my baby album. I look at them almost hungrily...which kind of sounds strange...but I do. They mean a lot to me. They are labelled, 2 weeks, 1 month, 2 months, 3 months, 4 months. Then it skips to 7 months. I wonder about five and six. I assume those were the months the penny was beginning to drop because my parents received my diagnosis when I was six months old. Three of the five of them I am with my mother. I look at her young face and I know she had no idea. I look at my little self and I can see the features as plain as day; even in the one where I'm only two weeks old, hands clasped together, eyes shut tight. I can see it easily. 

But these pictures mean a lot to me because ignorance is bliss - not that knowing really changed anything. There's some kind of innocence about them that I can't quite explain - as though, for five short months, I didn't have achondroplasia at all. 

And for some reason, I look at those five photos and I think, "That's when I didn't have achondroplasia at all."

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. * 

In which she wishes she could hibernate

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This Mama Bear is tired. So incredibly tired. I wish I was a real bear, living in Canada or wherever bears have lovely, long winter naps and sleep through Christmas.

Not that I hate Christmas. Far from it! If I could take the whole of December and January off to fully bask in the goodness of the season I would; but I can't. And everything and everybody has their final break ups, Christmas parties, concerts, gatherings and get togethers over the last week of November right up until Christmas Eve so, in the words of Truvy (Dolly Parton) from Steel Magnolias, "I'm busier than a one armed paper hanger!" 

And I can say that because I'm "in the club" - kind of!

This Mama Bear also decided to hand make a lot of her Christmas presents this year too....so I'm pulling a lot of late nighters. Silly me. I have a quilt to get finished and wrapped by Christmas Eve....and I have a sinking feeling that it's just not going to happen. Luckily there's a Plan B. I found it yesterday.

I need to remember that if I'm going to go all out in the Make & Bake Christmas stakes I need to start getting my act together in February so that I can have everything done (hopefully) by the beginning of December. As it stands now I have an entire quilt to put together and I still have squares to cut - after this I will have cut 588 squares. Yes, you read it right - and that's not counting the 20+ squares I totally stuffed up!

Because family members and gift recipients actually read this blog I can't post pictures of the hand made goodness so you'll have to wait till after Christmas Day!

The desire to hibernate is also due to the fact that there are things that have happened and are happening that have made life seem just way too big. There are times where I feel, "I'm too old for this sh*t!" whilst at the same time thinking, "I'm not grown up enough for this sh*t!"

After my last foray into the world of radio broadcasting I spent a week feeling incredibly angry that after centuries of "my people" being given away as GIFTS, seen as oddities, sources of amusement to kings and queens and commoners and guinea pigs for doctors there are some pockets of society who still hold to this idea and there will be those of similar stature to myself who would willingly offer themselves up to be part of it. For a while I agonised how to try and stop this and I found myself getting more and more stressed by it.

Then I let it go. I can't stop it, nor is it my job to do so. For some reason the care blew away on the wind as one would blow dandelion seeds. I am not them. I am me and what they choose to do with their own bodies and physicality has no bearing on me. I will continue to live just as I have always done. I will grab each opportunity and run with it. I will get out there and be part of the community as much as possible and trust that as I do so people are being educated in a positive way. There are times where this is rewarded. Yesterday was one of those days where I had a most lovely conversation with a father and his adorable four year old son as we walked across the road to the bank together. Their willingness to ask questions made me respond with an open heart and after the encounter my face couldn't stop smiling.

I need to keep remembering times like those. All the time.

Two more days. Two more days until I have three weeks of unfettered freedom. Well...that's the way I'm looking at it anyway.

One for all

J's housemate is praying for us both to be united under the one roof. This man is Muslim. For some reason this has touched my heart. A lot. 

My religious upbringing drew definite lines in the sand between who was right and who was wrong; who worshipped in spirit and in truth and who did not; who worshipped false gods and who worshipped the one true God; who was going to hell and who was not. 

Since leaving organised, corporate religion my heart has been opened to a much better way. I truly know now that God is love and wherever love resides there he is also. Love doesn't follow a formula or a schedule, love doesn't have set rules and right or wrongs. Love does not differentiate between culture or tradition. Love does not expect you to live up to a certain standard before it is given. 

This man doesn't even know us very well. He doesn't know me at all...and yet he prays and shows love. I am simply blown away by his kindness.

I cannot express the freedom I feel. It is like I have been caged all these years. When I gave myself freedom I know I stayed close to the cage, needing it's security whilst I found my feet. I'm finding my feet now and I'm beginning to explore places much further away now. They're not scary, as I thought they would be. They contain hidden nuggets of truth that assure me that God is still in his heaven loving me wherever I'm at.

I am free.

Batton down the hatches me hearties!

This morning I discovered that the neighbourhood pains-in-the-butt had decided that our house needed decorating sometime last night...or in the wee small hours of the morning. It's kind of a shame I don't share their artistic tastes. 

As a glass half full kind of a gal I gave thanks that it was just thick sharpie ink and not rotten eggs, grabbed a bucket of water, some Ajax, a scrubber and the hose and worked at clearing it off. It wasn't hard and the windows are once again sparkly.

As I was cleaning though I noticed that the window screens had dents and marks in them -  as though someone had dried to jimmy them off. This did disturb me, especially given that these windows are bedroom windows. 

So I went out to Bunnings and bought some lengths of dowel and wedged them into the window tracks so that they can't be forced open. I also went to the police station and filed a report. Honestly, I'm not expecting them to investigate it, especially seeing I've washed the windows, but at least I've filed the report, along with photographic evidence of the graffiti tag.

I don't necessarily think this is because it's our house as I've seen this particular tag around town quite a lot, but still I am shaken as I feel quite defenceless. I wonder what the statistics are regarding home invasions/burglaries and disability?

I guess all we can be is alert and vigilant regarding keeping our home secure. I've fortified the windows throughout the house, made others aware, notified the police. I'll leave outside lights on but the fact that this happened to the FRONT of the house which faces a busy road is quite disturbing because of the brazen nature of it. 

Still, I refuse to walk through life afraid. The numbers who are for us vastly outnumber those who would try to victimise us. I feel supported and cared for and feel confident they would fly to our aid if needed.

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.

Schoolyard tactics

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I made the fatal mistake of stumbling upon Free Jinger and GOMI the other day.

It got me both sad and riled so I started writing the following under the title of "The World Is A Big Schoolyard".

The world is a big schoolyard. I've finally worked that out. I can't believe how long it's taken me to come to this. I'm not saying that everyone stays in the schoolyard. There are a vast number of people I know and love who no longer reside in the schoolyard but have moved on to maturity and with mindfulness. However, if you just scratch on the surface of adulthood you see it's still there - the schoolyard politics and hierarchies and competitiveness and jealousies and terrible, horrible bitchiness that grows and spreads like a cancer devouring (or trying to) the goodness in its path.

I just don't get it. Why would you have a forum totally dedicated to hating on bloggers? Why would you troll on other people's sites that they tend so lovingly just to feed your own hate and jealousy and then bitch about it to others? If you don't like a blog, if you want them to "Get Off My Internet" then it's simple - JUST CLICK AWAY! Then they're not ON your internet are they? Practically every blog I read and love is featured on GOMI. And the bitching! Nasty, hateful, spiteful stuff. Awful.

I guess it's part of the reason why I've been so quiet on the blogging/diary front lately. I just don't do hate. I don't do bitchy. I have never been able to understand it and I have handled it badly when it's been directed towards me. (no, I wasn't featured on GOMI as far as I know. They seem to leave writers under the disability category alone...kind of.)

Which got me thinking a lot about my family of origin and wondering what we would have been like if I hadn't have been born with achondroplasia. Would we still have the same acceptance and attitudes towards difference if we hadn't had first hand experience of difference ourselves? I ponder on this a lot. I remember early years when I didn't know I had a difference. I remember starting at children/young adults who were different and my mother calling us on it. I remember a boy being cruel to a little girl with an intellectual disability at school and I couldn't work out why. She was just a little girl as far as I was concerned.

I remember a young man named Paul who had an intellectual disability. It concerned me when I was three or four as I knew he was much older than me but he was acting a lot younger than me. After he and his mother got out of our car and we were driving home I said, "That boy's not proper, Mum!" Funny how I knew to wait until they were out of the car to make a statement like that.

I remember a young woman with an intellectual disability who lived across the road from us. Sally was in her 20's...or maybe even early 30's. She came over to our place many, many times and played Totem Tennis with us. You'd see her walking the streets with her dog...who was not desexed and constantly (so it seemed) on heat. Consequently there were a whole pack of male dogs with them. We kids knew that Sally was a grown up but acted like a little kid...and that was ok. We didn't tease her for it.

Once my little brother and I did tease her though because we thought she wasn't wearing any knickers. Truth be told, she possibly had a massive wedgie. Mum tore strips off us. We were sent to bed without dinner. Our teasing had nothing to do with her disability and everything to do with the fact we thought she had a bare bum!

Sally came to a sad end. Years later when we moved away we heard news reports that Sally had wandered off from her residential care facility and had become lost. She died of exposure.

A kid in our neighbourhood once yelled at my brother, "You're just picking on me because I'm black!" to which my brother replied, "No! I'm picking on you because you're a little turd and you're annoying!" Racism meant nothing to us. My little brother shouldn't have been picking on that kid anyway, but his race had nothing to do with it. (for the record....that kid was an annoying little turd!)

I guess the point I'm trying to make is that these are the actions of children.....and children grow up....or they're supposed to. Meanness and nastiness and bias doesn't compute in my family. Not accepting people because they look different, think different, act different, have different values, religious ideas doesn't factor. When we encounter such nastiness the common question is, "But why???"

Which is why I can't understand those who don't move on from childish ways....and continue with the schoolyard tactics of bullying and teasing and bitching and hurting others simply because they can......and these days they do it from the "safety" of their keyboard and screens. They don't have to witness first hand what their nastiness does.....which to me is the penultimate of cowardice.

So.....please.......if you don't like a writer's content, if their lives make you gag, if you can't stand seeing one more picture of their perfect children, if you don't like the way they are living their life, or educating their children, if you don't hold to their same religious beliefs or lack of......then for the love of all that is good......CLICK AWAY! Don't leave that snippy comment. Don't bitch about them on a forum. Just don't go there. Let them live their lives and you go and do the same. Spread a bit of goodness into the world by wishing them well and moving on.

We have enough hate in the world. Hating is easy. Challenge yourself to taking the better road. Live and let live.