Standing on a golf ball

Yes, that's what I'm doing.

Have you ever tried it?

Apparently it's good for releasing muscles that run from your foot, up your leg, around your hip and....somewhere else.

My PT would be able to explain it because she's the expert but I don't have a clue.

I've been standing on this golf ball for the past half hour; not just gently rolling it under my foot - no siree Bob! Full on weight bearing of the wincing kind!

But gee my leg feels better. This left knee of mine is the one I have to watch. It's the leg that was deemed crooked all those years ago so the weight doesn't distribute evenly down the leg and the outside of the knee cops the brunt of it. It's a typical achondroplasia thing. Bowing of the legs is quite common. Back in the 80's there was talk about having tibial osteotomies and getting the leg straightened but we opted not to have it done. I'm glad we didn't. Back then the procedure was a little more primitive than it is today and the results wouldn't have been as good.

Over the past week, since the 10k my knee has given me some grief so there's been no substantial running for me apart from a couple of 5k's whilst I was away over the weekend.

But hooray for golf balls! Sweet relief! I might even head out for a good run tomorrow. I've missed it. My PT has set me a 17k in two weeks time. Longest run ever. Eek!

Adult clinics at The Kids

Unfortunately there are no Bone Dysplasia/Genetics Clinics set up for adults of short stature, however our team of specialists do us all a favour and sneak anyone over the age of 18 into their clinics at the Royal Children's Hospital. They are keen to offer us this service and are interested in following people with dwarfism throughout all stages of life so as to get a better understanding of our condition and to make sure that we all remain healthy.

On Tuesday it was my turn. I'd been waiting to see the specialists for a couple of months, to chat with them about how I was travelling, my training schedule and some MRI results I received last year so I was pleased when I received a phone call on Monday saying that there had been a cancellation at the clinic and would I like it?

It's a whole new ball game going to the Children's Hospital not as a mother but as myself and for myself. There wasn't any underlying tension or anxiety. Lovely, but strange.

I was seen pretty much straight away by one of the new kids on the block. When my kids were really young I used to hate seeing new doctors, or students or interns. I worried that they wouldn't know their stuff, that we'd be given wrong information, that they'd miss something important. I said as such to one of our most trusted, now retired spinal surgeons once. I told him, "Mr D, I hope these students are just as good as you." He smiled, looked at me and said, "Mrs W, I trust that they're better than me." 

After that day I relaxed considerably and learned to trust these new doctors. After all, if Mr D had faith in them who was I to question that?

Anyway, I was seen by a lovely young female doctor and we had a great chat about how I was going. She already knew a lot about me from the pre-clinic meeting the doctors and specialists always have so it was kind of nice not having to go through the same old story once again. She encouraged me in my fitness endeavours and said that I looked strong and healthy.

After we chatted, Associate Professor Ravi came in to say hi and have a chat. Ravi has known our family for eighteen years. We first met him on the day our youngest daughter was diagnosed with her condition. He and I are the same age...although he is TWO MONTHS OLDER which I never fail to mention to him as he ribs me about getting older. (he teases me about grey hair, I tell him that I'm grateful that I have hair...unlike him!) We chatted about my general health and he encouraged me to keep up with my running and fitness programs as there was plenty of evidence to suggest that it would ensure that I will stay active and healthy well into old age. He did caution me to listen to my body and not to push myself if my dodgy knee was acting up or if I was starting to become exhausted. I was encouraged to keep mixing up the training - swimming, massages (yes please!) yoga or just a simple walk. Staying active and listening to my body are the keys to my continued health and mobility.

We also talked a bit about my mental health. Ravi said I looked healthy and happy. We talked about how long it took me to succumb to the mental pressures of raising children with multiple issues. Whilst I had been feeling guilty about maintaining a facade of being strong, having it all together and living in denial for so long, Ravi told me that it was possibly the thing that kept me going, that kept me strong and made sure that we could all continue doing life as we did. He said that if I hadn't have kept that up the reality of everything would have crushed me. Paraphrasing what he said I think I get the impression that sometimes a bit of denial and dogged determination is a good thing.

And honestly, when it came to the day of the final spinal fusion, I really didn't think I had it in me to have to watch one of my children go through that one more time...but that dogged determination and a little bit of denial kicked in and we did it one more time.  I held my child's hand as they had their anaesthetic one more time,  held on to her as she had hallucinations from the ketamine...and watched as she learned to walk again.

So all this time I had been feeling guilty for putting up the facade I didn't need to. It's a necessary and vital part of being a parent of a child with a disability or difference. You do what you need to do to get through.

My appointment at the clinic on Tuesday was kind of cathartic in a way. I felt as though I had finally put some things to rest from my mothering years, along with getting the official go-ahead to keep on going with my running. I told Ravi that I didn't know what I would do if I didn't have approval to keep running because it's done more for my mental health and self-acceptance than any session I've had with a counsellor. Ravi said that we don't know what's ahead for me really, but while I am fit and well it is important to keep LIVING!

And that's what I plan on doing. 

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."

Confronted

Image credit

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.

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

Image source

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.

Impact period - six months

People come into your life. Some drift in and stay for the rest of your life. Others are there for a period - years and years maybe - and then they slowly make their way out again, or you both drift apart ever so slowly. Then there are those who are there for an extremely short period of time but the impact they have on your life is lifelong.

My third grade teacher, Mr L, was one such person.

Between the years of 1974 and 1978 my family and I moved a couple of times. The first time we moved just across the border of NSW and stayed there for 13 months. It felt like forever back then because in those short 13 months I can remember making a whole gaggle of new friends and starting a new school. What I didn't know at the time was that my mother and father would do some ground work before I started school and "prepare the soil" as it were. When they had selected a school they would have an interview with the principal and prepare him/her for my arrival, making sure that they understood that I had dwarfism, that I was very small and that I was to be treated just like everyone else. The principal would then let my class teacher know and the class teacher would then have a chat to my classmates about me, preparing them for my arrival so that when I joined their class on my first day the class would be naturally curious, but polite and kind at the same time.

Unfortunately, when we moved to a school in South Gippsland in the July of 1975, the lines of communication kind of got mixed up a little. Yes, my parents had the interview with the principal but the principal neglected to let my class teacher know. This teacher was Mr L. I don't know what was with that principal. Mum and Dad told me years and years later that they came away from the interview thinking that this man didn't really "get it".

Consequently when I arrived at that school for my first day and was presented at my third grade classroom the entire class simply went nuts. I can remember a lot of loud, hysterical laughter. Somehow I was unperturbed by this. I just didn't get it. At the age of eight I still hadn't grasped the concept that I looked different/ To me I was just little. Lots of people were little - maybe not as little as me, sure, but there were still people who were little so the concept that I actually looked different did not occur to me. I didn't associate the laughing with the idea that I was different. I simply thought the kids were laughing because there was a new kid joining their ranks.

Somehow Mr L gained control of the class and settled me in. I do remember the kids being extremely curious and asking a billion questions - most of them mainly to do with proving that I was just as old as them. I specifically remember them asking what "Times Table"I was up to. "Do you know your sevens? Eights? Tens?"'Being a real Maths dunce I only knew up to my threes but wanting to impress, I answered that I knew them all.

When all had quietened down and he had a spare moment, Mr L allegedly flew up to the Principals office and tore strips off him. He was horrified that he hadn't been told about me - not that he had a problem with it or anything, but if he had've known he would have been able to prepare the class so that my entry into their ranks could have been so much more positive. He was embarrassed for me, embarrassed for my parents and for himself.

The six months I spent in Mr L's class were amongst the best times I ever had at school. Ever. I can't remember much of what I learned in his class. Do we ever remember the specifics of what we learned in Primary School? I remember that he would conduct home visits for Parent-Teacher interviews and when he came to our place my Mum tells me that he said that I was "pretty thick"when it came to General Knowledge". Not that he meant that harshly or anything. It was just the way people spoke back in country Victoria in the 70's.

Mr L was fun but firm. He would play records at the class whilst we worked. Songs from groups such as ABBA, AC/DC, The Ted Mulry Band, Skyhooks, The Sweet, Bay City Rollers and Dragon always takes me back to those few short months in Mr L's class. I remember a lot of fun and laughter. I also remember that if a child was naughty (especially the boys), Mr L would take out the metre ruler and whack them over the bum with it. Funny thing was that ALL of the kids in that class LOVED Mr L. A smack with the metre ruler was deserved, as far as we were concerned.

We had a class budgie called Tweety who would be let out of his cage on occasion and let fly around the class. The greatest honor Mr L could bestow was to choose someone to take Tweety home to be cared for  over the weekend. I was honored with that job twice and I don't think there has been any budgie in history cared for with such love and concern!

But the best thing Mr L ever did for me was how he enabled me to participate in sport so that I felt equal. Being the smallest (and possibly least sporty) in the class I would often be picked last for teams - a sad, lonely and humiliating thing for any child to go though. There were times though when Mr L would take us out to play rounders, softball or cricket and he would make ME one of the captains of a team. Imagine the delight I felt being able to choose my own team! It was fantastic! Being in Mr L's class was the one time I really loved playing sport. My mother remembers that there would be times where I came home and told her, ''I made a home run today, Mum!" every day of the week. Curiosity got the better of her one day and she asked me, "Leis', how are you making all these home runs?"
''Easy!"I said, "Mr L hits the ball for me and I run!"This made her laugh because of course Mr L would hit the ball right across the oval which meant I had plenty of time to get to the bases! With me making all these home runs I became reasonably popular amongst my team mates, which meant that I wouldn't always be the last one to be picked if I didn't happen to be chosen as captain.

As a result, Mr L gave me the best gift a teacher could give a child with a difference. He made me feel the same. He fostered a feeling of belonging, of confidence. He didn't let my difference stop me from totally participating in everything the other kids were doing. He didn't single me out, he didn't make me feel different, he didn't make me feel more special than the other kids. I was just one of the kids, just as it should have been. I don't think any other teacher managed to give me that sense quite the way Mr L did.

I only had Mr L as a teacher for six short months. After that year, Mr L moved away and got married and we never saw him again. I think of Mr L often and wonder where he is. Did he stay in teaching? Is he still alive? I would love to see him again and let him know what an impression he made on my life. I would love to thank him. Does he ever remember me?

In the words of old Rose in the movie Titanic, "I don't even have a picture of him. He exists only in my memory."I don't even remember what he looked like, but somehow that doesn't matter.

Maybe one day he will stumble across this little blog. If you are reading this and you happened to be a third grade teacher in 1975 in a small country school in South Gippsland, where the main industry was the timber mill and the majority of the kids in your class were from poor, low socio-economic families...then....THANK YOU! Thank you from the bottom of my heart. I hope you know you were one of the best teachers that ever was. You were fun. You were fair. And you let one little girl feel that she was an important part of a group, that she was the same as everyone else. You gave her confidence. You made her feel included. I can't thank you enough.

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!!!

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.

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!