Postcards from the edge

Firstly, no this is not an original title. I've snaffled it from Carrie Fisher. I've never read her book, but right now I feel the need to seeing it has a pretty nifty title and pretty much describes where I'm at right now. I'm no longer going to even try to pretend that I'm in a good spot. I'm not even close. Therefore, right now I feel that I need to use this little blog to send out postcards from the edge into the ether that is the www. This is also a pretty brave move on my part as I've just advertised my little spot in cyberspace in the SSPA (Short Statured People of Australia) Journal, so I'm kind of expecting an influx of new readers who may actually know me in real life.I'm conflicted by this. Will they read? What if no one reads? What if they hate what they read? What on earth am I thinking letting people I actually know read my musings? What if people get hurt by what I write? What if.........

In any case, I'm blogging on regardless. I'm continuing to send out postcards from the edge into the ether of the www.

I went to church today, specifically because my friend Pam was speaking. I'd heard whispers that she was speaking about anxiety, but later learned that she was touching on anxiety, depression and suicide. I kind of think I was meant to be there this morning. She did a great job, regardless of the fact that she text me last night and said, "I'm speaking on anxiety tomorrow but the thought of doing it is making me anxious!" I tried to lighten the mood for her a bit by telling her that because she was speaking I was actually going to show up but make it my job to sit in the back and heckle her. She said I could...as long as I also threw chocolate. I did neither, however I did listen intently.

Everything she said I already knew, however for some reason it was comforting having her say it. I already knew that the first thing a person who is struggling does is isolate themselves...because that's my first instinct. For some reason though, Pam saying that today had a little more impact on me. I don't know why. Maybe it's been because I've been feeling so alone lately....especially after going to the wedding last weekend. Being at my (ex) sister-in-laws wedding was so hard as I really felt I no longer belonged now that I really believe that my husband and I have separated for good this time, All of a sudden I just felt so isolated and alone standing there on the edge at the back. That feeling has persisted.

But it's been like that for a while now. Over the past decade I've felt like everything has just been stripped away - well, everything I ever believed in and relied upon anyway. Friends have disappeared and friendships have dissolved, family seems a little disjointed and distant, my children are growing up and moving out. All of a sudden I don't know what my place is anymore and what to do next. To top it all off, the face in the mirror that looks back of me is one of an old, tired stranger and I find myself asking, "When did that happen?"

I also realise that some of the alone-ness has been my doing. In my confused, sad, angry and depressed state I have pushed people away and isolated myself for fear that my continuing neediness and depression would eventually wear them out and they would leave me. I know that's been confusing for people and eventually, some have given up and left me to my own devices. I don't blame them for it.

For some reason though, Pam has hung in there. We don't see each other often, but when we do we just take up where we left off. I can tell her anything and everything and she never gets shocked, never judges, speaks the truth in love. At the moment, apart from my sister Serrin, she's about all I've got. I told her that today.

So, where am I going with all of this? I realised today I need to start getting involved with other people again. I need to get myself out of isolation and reaching out. I need to stop fearing rejection and accept peoples offers of friendship and coffee and invitations. I need to become interested in what's happening, rather than be caught up in just surviving, putting one foot in front of the other trying to get through another day.

As a result, I signed up for Ladies Camp next weekend. At first, the thought of it was making me anxious but Pam suggested I just come up for the Saturday and all of a sudden it didn't seem so scary. When I said I'd go all of a sudden my heart lifted with a bit of hope. Who knows what's around the corner? Maybe instead of sending out postcards from the edge I might start sending out postcards from right there in the middle, in the thick of things. A place that might just be fun and exciting and full of life!

Do I dare open myself up again and start taking risks again? Maybe I should.

Stories from Way Back When - In which she is sent to school

*Just a word about my Nanna's religious fervor before I get into this post. I was driving home the other day and wondered about the pastors, evangelists and teachers who prayed for me during those early years. I wonder if they too, thought that this was something that God simply wasn't going to do? I wonder if their job was simply to pray as asked, responding to my Nanna's faith, rather than their own personal beliefs? For the first time in my life I really wondered about the pressure that these men and women of faith were under. They must have been caught between a rock and a hard place sometimes. If they talked to Nanna about acceptance of my condition then (knowing my Nanna) she would have possibly judged them for not having enough faith in God. Hmm....interesting thoughts!*

Life progressed pretty much on schedule for me. Some children born with achondroplasia have physical developmental delays. It is not unusual for a child with achondroplasia not to walk until they are two years old, even later. Not me. I walked at thirteen months.



I'm not 13 months old here but I think this one of me investigating something in the grass is pretty cute!

 Soon it came time to send me off to Kindergarten (pre-school). I took to Kindergarten like a duck to water. Living in a small, country town had its advantages and I was already well-known. I assimilated into the group well and did everything all the other children did - the only babying I received was when all the other children were expected to say "Thank you" and I was allowed to say "Ta". I have no idea why. I was a very articulate child! My teachers helped me reach things like the painting easel and the bathroom sink by placing one of the large blocks in front for me to stand on.




There I am! Front and almost centre, looking very serious. To the left is my best friend Adine, who will later have an important role to play in my smooth transition to school!



Adine and I in an egg and spoon race with a couple of our other Kinder friends.


My parents were very good with cutting the apron strings and letting me be just a regular little girl and playing just like other children. Sometimes when your child is born with any kind of difference there is a tendency to want to hover and protect them, being scared that they're going to hurt themselves seriously. Trust me, the potential was always there. Being very top heavy meant that I was prone to falls and when I did, my very short arms didn't allow me to break my fall, so my head would hit the deck first. I am sure that my forehead was perpetually a varying shade of new and healing bruises. My mother remembers a time where we were all at some kind of social gathering and I was outside with all the other children playing as per usual. One of the mothers came up to my mother and said, "Excuse me, but your little girl is outside with the other children!" to which my mother replied, "Yes, I know. She's perfectly fine."

The only thing that was a bit of an issue regarding me starting school was the toilet and managing my own self care. Everything else was all ready. I was smart (having already read something from the newspaper before even starting school!), I was social, I had the school bag....

Me with my brothers - Nathan (left) and Lane.

...the only problem was that I was unable to....hmm...how do we put this delicately? Nope! We can't. I was unable to wipe my bottom. My arms just couldn't reach. Doing a wee was fine, but Number 2's? Nope!
Lucky for me I was pretty "regular" so my mother would put me on the toilet before we left for school in the morning, I'd do what I had to do, Mum would attend to my needs and I'd be right until I got home in the afternoon.

One day, this didn't happen and I went off to school withough my regular morning toilet sit. When I got home, my mother asked how my day was. "Oh it was fine!" I said. "I had to do a poo at school today, but it was ok....Adine wiped my bottom for me!" My mother roared with laughter when she heard this apparently. Adine and I were just like two little old ladies when we were together and the thought of the two of us in the toilets together doing what needed to be done amused her to no end. I think it was possibly at that point where she knew that I would always find a way to get something done...even if it meant relying on my best friend to help.

Wordless Wednesday - friends.

It is amazing meeting an online friend for the first time. The ease that comes from already knowing all the basics is great.

Joining up with Faith Hope & a whole lotta Love and My Little Drummer Boys for Wordless Wednesday.

Where I stood

I've just spent a weekend standing on the outside looking in.

Once I thought I belonged in there. I would have been seated somewhere in the second row perhaps, looking on, smiling. I would have felt the hand of a special someone squeezing my hand as we both heard similar words to what we once said, and we would have both remembered and smiled, and wished the happy couple all the very best wishes for their life together.

But last weekend, only two days ago in fact, I assisted my family to their seats and quietly slipped to the back...way back. Possibly further away than anybody there. I saw the bride arrive, and she was simply glowing...the most beautiful I have ever seen her. She was radiant, full of hope and love for this man who wants to spend the rest of their lives together. I couldn't have been happier for her. I have never seen her so calm, so assured. It was like she was coming home.

She was coming home....

After this weekend I've never felt so homeless. I felt so awkward, so superfluous. I just slipped to the back and waited until the time I might have been needed again. I wasn't.

So when it was all over I kissed the bride, told her she was beautiful and gave her all my very best wishes.

I wished more than anything that I belonged, but I didn't...and don't...and I'm blown away by how much it matters. I got back home last night and the feeling of being homeless has persisted.

Where do I belong?

Road Trip

Greetings from Shell Harbor. We're all here for a wedding, which I'm not actually attending but I've come along in the capacity of second driver and support person. It's been a looooong day. Initially it all starts off with great excitement but then the road wears you down. You take one too many wrong turns, you negotiate unfamiliar mountain roads with multiple hairpin bends and people are just antsy and grouchy.
However the hardest part for me is dealing with the public in unfamiliar territory. Today I witnessed my family being filmed on someone's camera phone. I confronted the woman and she denied it but I know she did. Somewhere we feature on someone's Facebook page. The thought of this bothers me to no end.
I'm just a regular someone, you know. My family is just regular, just smaller in stature. The only time we KNOW we're seen as different is when incidents like that happen. It hurts, you know. We're not here for your entertainment. I'm sure you'd hate it if people saw your precious family as a constant source of amusement and an oddity. I hate it more than you can imagine.
We got back in the car and put distance between us and them. I'm trying to tell myself that that ignorant woman doesn't matter...but she does. It matters that it hurts.

Wordless Wednesday - coming up roses

Early morning in the garden.

Joining in with Wordless Wednesday over at My Little Drummer Boys and Faith Hope & a whole lotta love.

Stories from Way Back When - My beginnings.

I guess it's high time I started telling some stories about the history of me. There are possibly a whole book full of them, so why don't we start from the very beginning because, as Julie Andrews says, "It's a very good place to start."

My parents were High School sweethearts apparently. They grew up in the same district, went to the same school, got married. I was an honest-to-God honeymoon baby. My parents were married in the middle of May 1966 and then ten months later on March 9, 1967 (there, now you know how old I am!) I was born. My Dad was in the army at the time, stationed up in Queensland I believe. There was a mad dash home again when he heard I was about to arrive.

As soon as my mother's obstetrician saw me he knew straight away that I had dwarfism; possibly because of years and years of delivering babies, however he chose not to tell my parents. "WHAT??" I hear you all exclaim, "HE WITHELD THIS VITAL PIECE OF INFORMATION?" Yes. Yes he did...and it was one of the best things to ever happen for two brand new parents and their newborn baby. The doctor could see that my condition was good. I was healthy. There were no immediate concerns for my health or development, apart from the fact that my growth patterns were not going to be the same as every other childs. He had also known my mother since she was young so he knew that this little piece of information was best kept from her for the time being. So, he allowed her to get to know me and love me and to figure out this whole new parenting thing until such time where the truth needed to be told.

And that's what happened. I was taken home and loved. I ate, I slept (intermittently - like a lot of newborns), I had wet and dirty nappies. Everything happened pretty much as one would expect them to. Sometimes my mother would be concerned by how little I seemed to drink/eat and she mentioned it to the Maternal Health Nurse who answered that if I ate the same as other babies I would be shaped like a square. Little comments like this stayed in my mother's mind and made her wonder. As I got older, other family members with children started to notice that I wasn't growing in the same manner as their children. They all started to talk amongst themselves....so eventually, when I was six months old, my parents took me back to the doctor who was there at my birth. Apparently he told them that he was wondering when he would see them again and gently confirmed that yes, I had dwarfism.

You would imagine that this time would have been a watershed one for my mother in particular, but it wasn't. Instead there was a sense of relief. "Oh is that all?" were her words I believe. She was comforted by the fact that, apart from the fact that I was growing differently to other babies, I was a "normal" baby in every other sense. After the big reveal, my parents and I were referred to the Royal Children's Hospital in Melbourne to see the specialists there. I was photographed, x-rayed and examined and my diagnosis confirmed. My parents were given all the current information about achondroplasia and asked how they were feeling about it all. My mother, a very practical woman, was totally fine about it all. She had all the information she needed. I was doing well. I was healthy. There was no reason as to why I was born with achondroplasia, except that it was a random happening and would not happen again in their future children. That was all the information she needed - especially considering she was pregnant with my brother.

I'm not sure about how Dad felt about everything. He was, and always has been, the deeper one who doesn't discuss freely how he really feels about something. I can only say that my own experiences with Dad were of positivity, love and acceptance. Stories that have filtered back to me from various sources over the years have suggested that he took the news harder than he showed. Maybe this is just how people interpreted it. Maybe they took his reluctance to talk about it as him being upset. I beg to differ. My father has always demonstrated to me how proud he is of me - just as I am. He's just a private man. But to be honest, if he did struggle with it I am totally ok with that. As a parent I have struggled with my own children's conditions too. 

As I grew up I saw very little of the Children's Hospital although one kind and gentle doctor made an enormous impression on me and that was Professor David Danks who was the leading specialist in Genetics during the 70's, right up until he retired in 1995.

Prof David Danks.



He was everything you could ever want in a doctor in this field - warm, personable, understanding, gentle. I was so glad that he was still around to see me grown up with three children of my own. (at the time) I remember sitting with him one day and asking him what I should be looking out for with my children; were there any signs I should be on alert for. He looked at me kindly and said to me, "Leisa, we see them often enough to watch out for anything that needs taking care of. Your job is to just take them home, enjoy them and love them." I think he must have given my parents the same advice, because that's certainly what they did.

(hope you didn't mind that little segue there.)

Of course, things weren't always rosy in regards to the acceptance of my diagnosis. Notice I said "my diagnosis" rather than "me". My grandmother was a very faithful Pentecostal Christian and believed everything as written, therefore if God could heal then I was going to be taken to the latest evangelist/faith healer/pastor and receive healing. My parents didn't see any point in this but Nanna, being a very bossy formidable woman, was to be obeyed so they accompanied her wherever she wanted to take me. I think I was even prayed for by the late Billy Graham...or at least taken to one of his crusades. Nothing changed (obviously) and I was brought home in the same state as I left. Nanna, always believing in the goodness of God (bless her) saw it as us not having enough faith for the miracle. I think her words were, "I guess that if we really believed we would have brought along big clothes to bring her home in."

I know I talk about it all quite flippantly, but events such as this (and they continued throughout my childhood) had an enormous effect on my self-esteem and self-acceptance. I know that there wasn't any cruel intent on my Nanna's behalf and she only did what she thought was best, but the messages it implanted within my psyche were quite damaging.

So, that's a little of my early history. Next time I'll be venturing into my early experiences at Kindergarten and school. These, I promise you, will be a lot less serious! :) Stay tuned. I'll also try and dig up some photos!