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. 

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!