DwAM four days in

It's Dwarfism Awareness Month.

It's four days in and I haven't posted a thing about it. Not a sentence. Not a word.

I kind of feel guilty about that.

I also feel frustrated about it.

Months ago I was all fired up and sought out people to tell their stories right here on this blog. I wanted stories from short statured individuals, parents, siblings, average statured children of short statured parents, friends.

Only one person responded.

To say I was disheartened would be an understatement.

Then I thought that perhaps I could interview people who were in my life about their experiences of knowing, working with and dealing with short statured people. I was going to interview my personal trainer, my chiropractor, my best friend, my hairdresser, my sister.

I didn't do any of it. My sister is writing her reflections and they've been a great talking points over coffee. I do hope she finishes what she's working on. She's so articulate and I'm sure you'll enjoy reading her beautiful words.

But here it is. Dwarfism Awareness Month Day 4 and I've not written a word.

Until now.

Did you know?

● Achondroplasia,  the most common form of dwarfism occurs once in approximately 20,000 births.

● There are over 200 different types of dwarfism.

● Dwarfism occurs as a random mutation of a gene. (I'm an X-man - mutant and proud!)

● 80% of people with dwarfism have average statured parents and siblings.

● Dwarfism is not a disease that needs to be cured.

● The life expectancy of a person with dwarfism is the same as for an average sized person.

● People with dwarfism have careers and jobs in all fields - doctors, nurses, midwives, accountants, nutritionists, mechanics, actors, architects, psychologists, vet assistants, teachers, shop owners, computer programmers, entertainers, truck drivers, pastors, painters, editors...you name it!

● People with dwarfism are able to drive.

● They can also be parents.

● People with dwarfism would prefer to be called short statured, "a person with dwarfism" or as a "Little Person"...but most of all we would prefer to be referred to by our names!

I'm hoping to have other posts up this month that will help to raise awareness of dwarfism - not only in Australia, but around the world.

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.

Image credit

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!

In which she wishes she could hibernate

Image source

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.

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.