Spurred on!

Ok, I have to admit that since taking on this whole running thing I've doubted myself at times.

Before I ran the 15k Run for the Kids I was scared...and I had to argue with myself to actually do it. Part of me was saying, "You don't have to run you know. You've paid your entry fee. That's all they need. It can be your contribution to the Good Friday Appeal. You don't actually have to show up."

But I showed up, ran it and survived it. And I'm so glad I did.

Now Kara and I are in training for a half marathon. That's 21.1km in case you're wondering. That distance seems.....daunting.

After that we'll head into training for a marathon. That's 42.19km.

Just looking at that number seems enormous....but I have to remember that once upon a time a full lap around the reserve across the road from my house seemed enormous too.

I don't know if I'll be the first woman with dwarfism in Australia to run a marathon. I'm interested to find out. I do know however that there have been other people with dwarfism who have ran in and completed marathons.

Over the past 24 hours though I have gained inspiration from three athletes who all ran the Boston Marathon. These three athletes have different forms of dwarfism. I was particularly interested in the running career of Juli Windsor who became the first woman with dwarfism to complete the famous Boston Marathon.

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You can read about Juli's story in this article in The Marietta Daily Journal.

As soon as I saw Juli's photo and read about her run I thought, "Right! That's it! I can do it!"

(My kids know I mean serious business when they hear, "Right! That's it!")

Danh Trang and John Young also competed in this years Boston Marathon. Unfortunately John had to pull out in the middle of the race due to illness (unrelated to his stature) however I am sure he would have completed it otherwise.

Wow. Just wow I tell you! I know I can now. Not even my age is going to stop me. I've got a good 15 - 20 years on these guys too. Bring it on.

Ain't nothin' gonna stop us!

The Other Side of the Coin

I've always been confused by people who seem determined to dig their own holes, in spite of having clear examples of hope in front of them. Is it that they just want to wallow in their own pain? Is it more comfortable to be there? Does the working toward creating a bright future seem too hard...or is their picture of a bright future unrealistic?

I consider that I'm living a bright life, despite the shadowy bits. The sunshine always casts shadows...and that's ok. Shadows are part of the landscape. I have people who love me. I have a job that pays the bills. I am independent. I am strong, fit and healthy. Wouldn't you think that would be enough to convince someone that life with a genetic condition is still good, purposeful and fulfilling?

You would think so.

But there are those who, in spite of the brightness and soothing warmth of the sun will only look for and focus on the shadows. It's as though the presence of the shadows consume the very brightness that is still shining.

I met a woman and her 8 week old baby daughter in a serendipitous happening at a local supermarket. I was oblivious to her presence until she stopped me and blurted out, "My daughter's like you!" I looked in the carriage and there she was; this dear little baby girl who most definitely did have achondroplasia like me.

We discovered that we lived very close to each other and thus began a friendship of sorts. This woman leaned on me for support, reassurance and advice. Her family watched our family and we were their examples of a family with short statured members all living fulfilling, purposeful, happy lives - despite surgeries, despite attracting public attention simply by walking out our front door.

But it was the staring and comments that this woman focused on. It angered her, upset her...and it was as though she expected that the rest of humanity would not look or stare. In a perfect world this would be lovely...but we don't live in a perfect world.

Instead of watching how we coped with a curious world and gleaning information about how to help her daughter cope, this woman got angrier and angrier...reacting to any form of staring or comments that we or her daughter received. She did not know how to differentiate the natural curiosity of an innocent three year old child and the obvious, cruel taunts of a group of teens that should know better. Staring was staring and the starers, whether they be a three year old child or a sixty year old man bore the wrath of a mother who, I believe deep down, was having a really hard time coming to terms with the fact that her baby was born "not quite right".

And, despite all our encouragement and support, the family never really got over it. The little girls difference was at the forefront of their minds all the time. The girl grew up very, very angry to the point of responding with animalistic snarls towards any form of attention she got. The mother never taught her how to be independent so she never learned skills like cooking for herself, shopping, travelling alone. Her mother never even let her daughter have her own ATM card for fear that she would be mugged and robbed, therefore teaching her daughter that the world was out to get her, that she was incapable of defending herself. She never learned to shop for herself, never learned how to catch a bus or a train on her own. 

Now in her mid-20's the girl is a recluse; never leaving the house because she can't deal with the world. She has no job, no life skills, no confidence.

And I started wondering if there was more I could have done...but I know there's nothing more. Sometimes your life can be a good example for another and yet they choose to see what they want to see. It's still not enough. They want anonymity for their child...that sweet, blessed invisibility that the average Joe-Bloe is born with just by being average...or normal...or unaffected by any genetic anomaly. The human race is a curious race and we all, even those of us who are born "different", are curious about anything or anyone who is different to the norm. 

Yesterday I bumped into the mother who was still stuck in her angst and resentment. She acknowledged that by doing everything for her daughter she had created a rod for her own back and raised a child who will never be independent because she was never taught how. She remained negative the entire time I spoke with her and, after telling her of my running plan, became the first person who doubted it's success.

I always knew that I'd been raised to be independent, that by being born first and expected to be the "big sister" I had responsibility thrust upon me at an early age; that by being put into ballet classes, Brownies, Guides, Little Athletics and Youth Groups I was encouraged to be out and about in the community and learned to cope with people's natural curiosity and sometimes rudeness...but I also learned social skills just as any other child my age would; that by being just one of seven children I learned to fend for myself because there was no time to mollycoddle and over protect. But to see the other side of the coin yesterday was a real eye opener and I saw what could've happened if things had've been different for me.

Mind over matter

Yesterday I did it. I smashed my 12km goal. I ran a total of 12.11km. The first 7km felt great, the next 3km I started to wane, the last 2km were hell.

But I did it. I ran 12km. It may have taken me 1 hour, 48 minutes and 4 seconds, but I did it - at an average pace of 8:56/km. Not bad, considering I dragged the dogs along who, for some part, we're not the most cooperative companions.

In some ways I can't believe it myself. Me, who once upon a time couldn't even run one lap of the school oval. Twelve kilometres! I can't even...what?

I'm setting my sights further now. My mind is already contemplating 15km. Not yet though. I want to be able to run twelve comfortably first. I thought I'd arrived when I hit ten...but now...the sky seems to be the limit and I have fantasies of one morning donning my running shoes and running across Casey county...then to the other side of Melbourne...then back again to the coast...then turning around and running clear across the country to Fremantle...a'la Forrest Gump. Now that would make the news. 

I can see the headlines now:

Woman with Dwarfism runs to promote awareness!

Oh boy, that's got me thinking for Dwarfism Awareness Month - October 2014. Do I dare even contemplate it?

Do I?

I mean, my 2014 theme word is ACTION. 

Why just think about it when you can put it into ACTION?

But first, I think I'll mull this over for a bit.

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.

Confronted

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I watched The Station Agent for the first time last night.

For those of you who are unfamiliar with that particular film, please pop over to IMDB and search it. The Station Agent was the first film "my lot" became aware of the brilliance that is Peter Dinklage. Everyone raved about what a wonderful film it was and how fantastic it was to see a short statured actor play just a regular person with regular issues rather than be in costume as a fantasy creature, comic relief or in a token role. We were all encouraged to see it.

But for some reason I simply couldn't at the time. I just couldn't. I'd heard that there was a scene where he's drunk and gets up on a bar and shouts, "Go on! Take a good look!" and the idea of that scene was just too confronting for me at the time so I chose not to see the film.

I've thought about it a lot over the years and I've come to the conclusion that I find it confronting seeing aspects of my own life played out in front of me - either on the screen or in the pages of a book. In daily life I'm kind of in control of what I see happening around me. I know it all happens - the stares, the comments, the poking of the mate in the ribs and having a laugh, the random pictures and videos taken on a smart phone - but I can somehow block it out to some extent and exist in my own bubble of ignorance.

But to see it up close and personal, highlighted on the screen, or written about in the pages of a book is too much and it hurts...and I'm confronting how I really feel about it...and how I really feel about myself and my own physicality. I watched Peter Dinklage walk and I asked the kids, "Do I walk like that?" They were not able to tell me. "What? He's just walking Mum and so do you." They didn't get it. I suppose this is because they've always been accustomed to having dwarfism around them whereas me, coming from an average statured family, this is all sometimes a "new" experience for me and seeing another image of myself in real human form is still a curiosity for me. Strange, but true.

Last night I watched the film. Finally. I'm glad I did. I think it was the right time. I think I was ready. It was brilliant. None of it was over the top. The daily incidents that happened to Fin McBride was accurate and true to life. I saw echoes of my own life as I watched his two new friends display genuine attempts at friendship and Fin's initial reluctance to let them in and open his heart. The reactions of the children, the townspeople - all true to life. I watched it and was unafraid - touched by seeing reality portrayed in such an accurate and dignified manner.

And I was so proud of Peter's persistence in holding on to his ideals; that he wasn't going to belittle himself by taking on roles that didn't require any skills other than the fact that he's 4ft 2in. He has held on to his dream of being a respected actor, brilliant in his craft. And he is and has earned the accolades to prove it.

I think I will always continue to be confronted by mirror images of myself on the page and on screen, but I am learning to look within and work out why. There are still films I haven't seen and books I haven't read simply because I'm not ready yet. Maybe one day I will be.

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*

Reality bites

I've had one of those days. You know, the kind of day where you wake up and all is fresh and new and you feel good about the world. You open up your inbox and you find inspiration from a site you've subscribed to. You repost the article about finding happiness within on your Facebook because its just so relevant to the journey you've taken and where you're at, and you just want to share that hope with others...

And then you step out your front door and a good dose of your reality hits you fair and square in the face.

I've gotta say that I really don't appreciate being referred to as a "Walking Head Job" by random young adult males as I go about my daily business. It's not a compliment, it doesn't make me feel desirable or sexy. In fact, it's a form of sexual harassment. Isn't that a crime or something? Honestly, the fact that I'm at the height of an adult males crotch is not something I actively think about, not even when I'm standing on a very crowded train. But males being males do think about it apparently...possibly because their thinking is dictated by that little...thing...down there...or so I've read.

How would you feel, ladies, if you were talked about like that? Gentlemen? How would you feel if other men made snide sexual remarks about your wife, girlfriend, sister or daughter. What if other men looked at you and didn't see you as a beautiful, attractive, desirable woman but as a sexual freak?

Not nice to think about, is it?

I think that young males like the one I encountered today don't expect that I'm going to take them on. I think they believe that they're going to get away with their remark and that they will get a good laugh from the mates or girl that they're with. And yes, today he was with his girlfriend...and she laughed too. What's with women not standing up for other women?? Aren't I part of the sisterhood too, or don't I belong there either?

But this brave young man wasn't such a big shot when this little "Walking Head Job" bit back, was he?

Not more than five minutes after he said it I tracked him down and confronted him. 

If ever you refer to me or my daughters as "walking head jobs" again, so help me I'll find where you live and come in and chop it off so that YOU won't be fathering anything!

Not my greatest work, but enough to show him that yes, I heard him and no, I wasn't putting up with that crap.

They really don't know what to do when they're confronted by their victim.

But see, I refuse to be anyone's victim.

So, my post on Facebook today about love and forgiveness and acting in loving ways towards my fellow man may have been a little premature this morning, but I'm not perfect and I'm still a work in progress.

And some people need a bit of a slappin' down once in a while.

Life Goes On

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When I first started this blog I wanted it to be a chronicle of what it was like living as a person with dwarfism. I wanted to get my voice out there so that the general public would be educated and that if a parent with a newborn diagnosed with a dwarfing condition stumbled across this little place in cyberspace they would read about someone who was living a normal life, that this diagnosis is not a terrible thing and their beloved baby had every hope of having a great life.

But I've found I don't really talk about my dwarfism much. I just talk about daily life, my journey towards mental and physical wellness, the thoughts I think, the observations I make, my hopes and wishes and dreams.

It was then that I realised that this IS life with dwarfism. It's just life...and hopefully it's showing everyone who comes here that life for me, for us, is not different, or strange, or terrible, or magical. We don't live in little houses and sleep in little beds (believe me, I had a person in my life who actually thought that!). We're not relegated to jobs that entail making people laugh by making fools of ourselves (although I know of people with dwarfism who make a living of doing just that....but then again, I know average statured people who do the same thing too!). My life is actually pretty ordinary every day, but I choose to see the magical in the ordinary - the precious moments that make life worth living for everyone that transcends whatever human condition we may have been blessed with.

So, I'm handing this over to you, the reader. What do YOU want to know about? Are there questions you have for me? And my personal philosophy is that there is NO SUCH THING AS A SILLY QUESTION, so ask away!

What the photos don't show.

We gotta get us one of these!

I must preface this entry by saying that I don't resent what follows one bit. I'm simply writing it as a statement of what life is for us. All of us have accepted this reality and are at peace with it.

A trip to the beach is not easy. Once we're there and have secured our spot on the sand reasonably close to the water it's easier but the actual getting there and then packing up and heading home is, for me at least, exhausting.

Beaches are not made for wheelchairs; or maybe I should say, wheelchairs are not made for beaches. I have often said that some clever person should invent the "Hover Chair" so that one can just hover over the sand and stop at the waters edge if one wants a swim. I have seen a wheelchair with tracks like a tank which would possibly also do the trick but finances don't allow for anything so expensive, let alone something that would only be used sporadically and that we have no way of transporting anyway.

But no, wheelchairs are not made for beaches. However, I've never wanted the girls to miss out on a wonderful beach experience. As a family we've always loved the beach and I've never wanted the girls to ever miss out because their disabilities have posed a challenge.

And so I carry them down to the waters edge. I always have and, for as long as my body let's me, I always will. And yes it's exhausting, yes it's sometimes painful, but I've challenged myself to never let them feel as though having to do it is a burden to me. We've made it into a game on many an occasion; we've pretended we're the girls from Rabbit Proof Fence, trekking through the desert trying to get home. We've laughed. They know it's hard and I know they worry for me but it's more important to me that we have shared, happy family experiences together and I'd rather be uncomfortable for a short while than all of us miss out on something we love to do just because it all just seems too hard.

And I know the girls don't take it for granted. Between us there is a beautiful level of respect and gratefulness. I am so blessed to have such thoughtful, loving, positive kids. They make all the extra tasks that are part of their package into things I feel honored to be able to do for them, rather than being a burden. When they can, they try and make things as easy as possible for me. I look at them in awe sometimes because their positive, calm nature just astounds me.

So that's what you don't see in the pictures, but I'm kind of glad you don't because you see the important part; the greater part. You see a family just enjoying an evening on the beach.

The Public Face

Do you have a Public Face?

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I feel the constant need to put on my Public Face. All. The. Time. This is the face that smiles and says, "Yes, I'm fine. Sure I've seen each one of my four children through extensive, life-changing surgeries. Sure I wrestle every day with access issues. Sure I try and ignore people being insenstive and downright rude and ignorant every day. But I'M OK.

I find I am very aware that I am on display simply by stepping out my front door every day. I attract attention. I attract attention because I look different. I know this. I understand this. I know that if I wasn't short statured and I had never encountered difference I would possibly be curious too. With the upbringing I had I would like to think I would be politely curious. I hope I would. I guess I'll never know because I am the one who looks different so when I encounter another person with a difference I've never seen before I treat them exactly the way I'd like to be treated - with respect. I note their difference and then move on, letting them be just another face in the crowd just as I wish to be.

So, being a person living with a difference I learned from a very young age to put on the Public Face. The face that appears not to notice that people are looking, and staring, and giggling, and digging their mates in the ribs to make sure they notice me too, and getting out their mobile phones to take a picture or make a video to upload on YouTube or their Facebook or just to share with their friends. But I do notice...and I pretend it doesn't matter but it does. I like my privacy. I can make a joke with myself that they're only taking photos and videos because I am so damn hot or so damn famous that they can't believe they've seen me. It doesn't work though

The constant need to prove...

I had a job interview yesterday. Actually, it was my second interview for this job. I don't know how I did. I'm REALLY kicking myself that I didn't study the Early Years Learning Framework before I went so I  would have been more prepared. I don't know if I won't get the job because I know very little about it. Gee I hope it's not the thing that kills it for me..

This interview has really got me thinking though about how tired I am of the constant battle to prove myself. I know everyone does it in some form or another. We all have to go to interviews and practically sell ourselves, proving to the potential employer that you above all the other applicants are the one they want. But what about if you feel as though you have to prove yourself every day because you are "different". Going into this interview simply highlighted that for me. I have to prove that despite the fact that I am 117cm tall I am still more than capable of looking after babies and toddlers who, in a few short years, will be taller than me and are already half my height if not as tall as me. I have to explain to the employer how I will change the nappy of an 18 month old when putting them on the change table will be "dangerous" to them and me. I have to help the employer work out a way for me to access door handles that are "kid proof" and therefore unreachable. I have to convince them that I can do it...all of it....even what they at first glance think is impossible. And then after that, if I am employed there, I have to daily prove to the parents of the children that their little ones are safe with me, that they're not going to run roughshod over me and be uncontrollable. That I know my stuff, that I can handle their children's tantrums and accidents and that I'm able to comfort them if they are scared and sad.

But I also have to prove that I'm capable in everyday life too - holding down a job, looking after my house, changing the oil and water in my car and filling it with petrol/gas, carrying heavy items, doing my shopping.

Maybe I don't have to prove it? Maybe this is just something I have created in my own mind? Maybe people are just watching, fascinated to see exactly how I do things, rather than wondering IF I can?

Still, I had a heavy sense of having to prove myself in yesterdays interview, even though it was with people who have known me for the better part of 15 years. Maybe that's just the nature of interviews...but at the same time, a couple of those people have also witnessed how I have handled (and sometimes not handled)extremely stressful and trying circumstances over those years.

Gee I hope I get this job. I want it more than you could possibly imagine.

Future Kids

Yesterday my family and I went to the annual Victorian SSPA Family Christmas Picnic. Despite windy, cold weather it was a lovely day.

I was astounded at the number of families who were there. So many of them! All of the children were no older than 10 years old. There were a couple of families there with babies under 6 months - all new little ones with a dwarfing condition.

I loved watching the little ones run around and play together. As I watched I thought, "Was I ever that cute?" Honestly, your heart just melts. I watched as new friendships were formed between the children and the parents got to spend time together chatting, catching up and gaining that reassurance and understanding that only a support group such as ours can offer. I spent time with some of the new parents with babies newly diagnosed with achondroplasia. I love listening to their stories...from when they first learned of the condition of their baby, through to acceptance and to where they are today. It's both heart-wrenching and exhilarating. One theme runs true though - that everything turns out ok in the end, that things aren't scary and as bad as they thought and that they are so in love with and proud of their child just the way he/she is. I love answering their questions. I love the hope I see in their eyes as they look around at the group, seeing short statured children running around having a ball, adult people with short stature living fun and fulfilling, purposeful lives and other families just like them who are able to relate to where they're at.

I watched those little ones running around and realised I was looking at the SSPA's future. My hope for them is that they are able to take it further than we have, that they will achieve more than we did, that they will also show the world that we're just regular people in a smaller body.

I wanted to take lots of photos to capture the goodness of yesterday but I didn't. Somehow I knew that these families needed their privacy. For a short while at an SSPA event you're just part of a crowd. You're not different, you're not unusual. You're just part of the group. I wanted to preserve that for them. I know how much I crave anonymity and invisibility when I'm out in public so I wanted to at least give them that respect.

Oh but the cuteness!!!