“It’s far from any other hospital I’ve ever visited”

I just got back from a full day of appointments at the hospital the other day and boy was I exhausted! I was in there from 10:30am to 3:10pm, only 4 appointments in total but much of it was waiting around. I had a Dental clean, then got my braces adjusted….. owww! Then had to get an ultra sound on my heart and an ECG. Then I had to see my Transition doctor (because my time at the Children’s is nearing the end) and lastly the Cardiology Consultant. Doesn’t seem like much in writing, but in a day, it feels like it’s never ending.

I often have big days like these because if not, I’d be in and out of hospital every week. This at least keeps it to a minimum of once a month. It’s still very frustrating and tiring and I just wish sometimes that I didn’t have to go at all…… well, obviously, who does?

With my disability, It’s a myopathy, you see – a group of muscle weaknesses. I have vision impairment, hearing impairment, maxillofacial difficulties, fatigue and general weakness in the limbs. Although (thankfully) I don’t have internal organ weaknesses such as heart and lung conditions. Every year or six months I have to go in for routine check-ups to monitor things and make sure nothing changes as I get older. When you think about it, my disability is not that serious. 

But my life feels as though it is revolved around hospital appointments. I lose school days and energy over them, it’s just sooo draining. My Mum and I joke that it’s like a second home because I’ve been coming to the Royal Children’s Hospital since I was born.

However even on days like these, I need to remind myself that it could be worse. There are kids in here every day and their conditions are way worse. Plus, I’m very lucky to be going to the best children’s hospital in the country. Children from across Australia and sometimes around the world, fly to Melbourne just to access this hospital’s care and facilities. Meanwhile I only have to drive 30 minutes.

Like I said, the Royal Children’s Hospital has been a big part of my life since I was a baby. And although the buildings have changed since then, I think it’s fair to say I know this place pretty-well. From the giant butterfly statue in the centre of the ground floor to the familiar child-like animal pictures on the insides of the lifts and on the wall of the clinics and wards. The giant cylinder fish tank that starts from the lower ground and runs up through the floors. And then of course there’s (my favourite) the Meerkat enclosure in the specialist clinics area. It’s a pretty spectacular place and It’s far from any other hospital I’ve ever visited.

Oh and here's a fun fact that I learnt while one of my best friend's was visiting me in hospital this year: turns out her Dad was actually involved in the construction of this latest hospital building!

Also, the staff here are pretty fantastic. We have some of the most highly trained doctors (in all fields) working here and most of the nurses are quite lovely and caring. I have this fear of needles, you see. Well it’s a fear of all things that could cause any ounce of pain. I reckon I’m generally pain intolerant. I swear I can’t even handle people pinching me. One of my best friends always teases me and he’s constantly pinching me because of this. Anyway, despite this fear, I trust the nurses here at the RCH to give me flu shots and take blood… most of the time, which I think says a lot.

In my entire life, I’ve only had two major surgeries, both on my jaw. The first when I was 11 and the second, this year. The only other times I’ve ever stayed overnight in hospital was for a sleep study (I think 2 or 3 times). In terms of emergency runs, I haven’t had any real ones. I used to get heart palpitations a lot but they were all false alarms and never led to anything. I’ve never even broken a limb. That’s what I mean about being lucky that my condition is not that serious and that hospital visits (although regular) are nowhere near as often as a lot of kids I know.

So yeah, I’ve only ever been admitted a couple of times myself, I think that most kids (though it would be better to not have to be admitted at all) would be pretty pleased to be looked after in a place like this. There’s just so much about this place, (the rainbow of colours, the pictures on the walls, the playground, statues, animals, cafes, gift stalls. Not to mention the fact that there are no corners or sharp edges; everything is rounded or odd shaped) that keeps you distracted from the fact that this is actually a hospital.

The truth is, although I get sick of the countless appointments, one after the other. The ridiculous hours of waiting. I feel safe, I feel well looked after, I feel lucky to be here. And I know I’m gonna miss it when I graduate…. Oh, and yeah, that’s actually a thing! When you transition to an adult hospital, there’s a graduation ceremony for kids who have been connected to the hospital for a very long time.

Okay, I feel like I’ve made a few different points but that’s alright I guess. I hope at least you take something from all this. Also, if you’re a child going into the Children’s for the first time, or you have a child going in, I promise you are in good hands.

Have a lovely day! xx