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.