Sunday, 19 May 2013


So we're home now.

I always feel like I should be able to describe what's happened in one word. As in, "it was so ....." or "it was such a ....". There should be a word to sum it all up. Sometimes though, an experience is so complex that one single word just won't do - sometimes supercalifragilisticexpialidocious actually doesn't cut the mustard.

I guess it all goes back a bit further than just this last hospital visit. I think it's been coming on for a while now. My perspective has changed. Not just a little bit. It's like I was standing looking at Melbourne from the top of Mt Dandenong and now I'm looking at it from the Eureka Skydeck, at night.
(For those non-Melbournians, Mt Dandenong is on the edge and the Eureka Skydeck is in the middle...)

I'm not trying to insinuate that I am now all-seeing and all-knowing, but certainly that my experience of people and situations is so much broader than it used to be and is necessarily much more accepting of diversity.

If I think back even 9 months, I was just wishing I could see more of my husband, hoping to buy a house in the not too distant future, thinking the car I have would do for now but be due for replacement as soon as the children stop smearing horrible substances all over the inside. My own acceptable standards for my beautiful, smart, funny, loving daughters were through the roof - regardless of what they thought. I was in many ways, deep deep down, striving for my perfect life, one with no great deviations from the norm and one in which we in my family were all doing better than everyone else. (Just being honest here. There is a slight competitive streak in me......) Again, no consultation with my family members on the competitive thing, just my own slightly unhinged goals.

It was this mindset which took the biggest blow when Jacinta was born - and deservedly so. Lucky, very lucky that I had decided before she was born that she was beautiful. I shudder to think how I might have tainted the first few days or weeks of my daughter's life with my own disappointment or dashed hopes, even ideas that this scenario was unacceptable - I did say slightly unhinged!

And looking back now I also feel a little ashamed that I let it get that far. It's certainly not how I was brought up. In our family, love was at the centre of everything pretty much. Sometimes it was tough love, but it was never absent. We never saw an ounce of hate pass between our parents or from our parents to us. Never a moment of resentment. Never a sarcastic joke at our expense. If ever one of us even joked that our parents didn't care about us, our Dad in particular would get very serious about making it very clear that they loved each and every one of us.

My parents extended the hand of friendship to others in need of friends. This sometimes made for interesting Christmas lunches. Our family friends included a family of Vientamese boat people who asked directions of my father one day in the '70s when he had driven the train they had caught, which resulted in him taking them out to buy a heater on the weekend. Incidentally, the eldest daughter of this family was working as a doctor across the hall at the Women's when Jacinta was there. Small world!

The story of how my parents met is very telling on this subject. My mother and father were both in a bushwalking club. They did the usual, checking each other out on the bus ride to the walk, getting to know each other as they walked along. The second time they saw each other, my father stopped short and asked my mother "what happened to your leg?".  She was over the moon!

When she was a baby she had had a birthmark on her leg which worried the "stupid woman doctor" as my grandfather would call her.   When she was still small, they x-rayed it and somehow (my mother said it was too close to the bone) her leg stopped growing for about a year or so. This meant that there was a noticeable difference in length between her legs. She wore a prosthetic boot from about 2 years of age.

My father had been so enraptured by her company the first time that he hadn't noticed what I suppose many would perceive as a disability. My Mum went to great lengths from a young age to challenge anyone's idea that she was disabled. If anyone even gave the slightest hint that they thought she couldn't do something because of her leg, she'd be doing it to prove she could.

When we were growing up, I used to get sick of people at school asking about her leg and what happened - mostly because at home it never came up and it was annoying telling the same story over and over again. (Poor me!) We used to cheekily put on her boot while she was getting dressed and walk up and down the hall with it for fun - until she'd remind us that she was kind of stranded without it and needed it back please!

So I suppose physical abnormality was a part of life from the day we were all born. Yet somehow I became intolerant of it. Why? Hmmm....not sure. I guess it's foolishness to think that all abnormality is the same. It's not. A guy with tongs for hands is not the same as a guy with a face that is bright red and knobbly. They're individuals. I recall staring at a guy I saw once who had a boot just like my Mum's. It was the first and only time I've ever seen anyone other than my Mum with a built-up shoe. I was stunned to see that on someone other than Mum and a moment after, I wanted to run after him and explain why I was staring. It all seemed entirely unnecessary though, so I went on my way.

So over recent months, I have come to know many people with children who have a physical abnormality. I use the term 'abnormality' very loosely, since 'normal' is such a broad spectrum it seems wrong to put some within it and some out, but for now we have an agreement of what a normal body looks like and does, so anything outside of that is an abnormality for now.

The gradual process of exposure to sick children in hospital and the outpatient clinic attached to it has certainly changed my viewpoint. The Cardiology area of the Children's is a very sociable area. It's part of the culture that you can talk in the Parents' Lounge to anyone there and have a frank conversation about how long you've been there, why you're there and how it's all going.

Half the parents on that floor are in Intensive Care - Cardiology or General, Rosella Ward. The Children's has the best Cardiology department in the country so the cases are often very specialised and a lot of people are from out of town. The Intensive Care nurse who looked after Jacinta on her first day there said that in that ward they get the most unbelievable things. They get the things nobody would ever conceive of happening. Apparently her children have been on the receiving end of lectures that start with, "if you EVER think about climbing on top of a train while it's moving.......".

In the Rosella ward at the Children's, everyone's got a story. "My baby was born with Down syndrome, diagnosed at birth and had a septum which looked like swiss cheese plus the surgery was complicated so she had to go on bypass for a second time while they ligated the surprise extra blood vessel" is a pretty boring story. Five days in Intensive care - nothing. A week staying in hospital with your child - a holiday. At least you get a bed - and meals? Luxury! Your family is staying at home, which is a 30 minute drive from the hospital - lucky!! You haven't seen your children for two days? The lady at the table with you hasn't seen hers for a month. If you haven't been on ECMO, you're small fry. Really.

This is nothing....

ECMO is a heart/lung bypass machine which can be run outside of the operating theatre. There are specially trained Intensive Care nurses who can use this machine. If your child is on this machine, it's serious. The Children's has the largest ECMO team in the country. If you live anywhere but Melbourne or Brisbane, they have to come and get you and bring you here. They send a whole team over, with the machine to hook up the patient and bring them back. If it's a smaller hospital, they have to bring surgeons and cardiac nurses, anaesthetists, the whole lot to get it hooked up. Sometimes they have to make a judgement call based on the likelihood of the child's survival before they go, since the excess baggage fees are around $3,000. It's a grim business.

In the parents' lounge, the conversation could go something like, "were you on ECMO?",
 "Yeah, just after surgery."
"We've been on it three times".

At the beginning you're talking about your surgery, then you talk to people who've had 6 operations since they came in a week ago. People whose babies have been an inch from death and they're talking about having 60% of their stomach removed, but they're alive and that's what counts. People who have what you've got and more. People who've got really rare chromosome disorders. The sort that are born once a year, not once a week. There are several children in the cardiac unit who have Trisomy 21. It was really nice to meet a couple of other Mums whose children were in a similar boat!

The day we were discharged, there were about 5 emergency calls in the rooms across the hall from us. We were already used to hearing the special alarm, the split second of silence before the clop clop of about twenty feet all heading to the room in question. On the second one we were in the middle of having an echocardiogram and the person doing it hung up her sonar thingy, excused herself and headed across to help. We hung out all gelled up while we wished every good thought for the guys across the hall who clearly needed our guy a lot more than we did right then.

Towards the end of our stay,  I was talking to some people who'd come in around the same time as us and were going to be there a bit or a lot longer. None of us could believe how accepting we'd become of these surreal realities we'd all been faced with. Again and again the conversation about how our perspective on life had changed and how people in everyday life would think it was such a big deal, but in there it's just what's going on today. One lady told me she'd been at the hospital for over a year dealing with bone marrow issues. Her daughter was back in ICU for about the 6th time and had just had yet another surgical procedure. She lives several hours away and has a roster with a couple of other family members so that she can be home with her other children too. She says that if her daughter gets rushed to ICU and it's a school night, she'll wait til morning before coming in. It's so routine that she can't justify dropping everything.

What I think I like best about the vibe in there is that there's no 'you poor thing' much going on. It's all 'that sucks!', or 'me too', or 'that's fantastic!'. One day early on, a family I'd got to know had some awful news and things weren't looking good. We'd just moved to the ward and had some tubes out and things were looking up for us. When the father of this child told us what was happening and then asked how we were doing, I sort of looked at the floor and shuffled my feet. He said, "tell me! I want to hear good news!"And he was genuinely pleased that Jacinta was doing well. It seems hope is catching.

One thing which made me really smile was when I was talking to my eldest about a little boy whose parents I got to know quite well in the hospital. He's a tiny little bub and he has a chromosome disorder as well, called Smith-Lemli-Opitz Syndrome. (No, I can't pronounce it.) He has a whole selection of unusual things going on, one of which is an extra digit on each hand and foot.  I was putting one of those wondersuits on Jacinta and excavating fingers from inside the sleeve to get it on right. I grumbled a little in wonderment about how tricky it is to get all five fingers through at the same time. "Imagine the trouble I'm going to have", said his Mum.

In the lounge another day, I was mentioning this baby to another lady I knew there who had a friend visiting. When I mentioned the extra fingers and toes, her friend's first comment was, "can they operate to fix that?", which stunned me slightly and I said, "or just leave it as it is". "Probably the least of their worries" added the woman whose friend it was, and who naturally understood that you're not in ICU for having six fingers. In defence of the friend, I could absolutely relate to that brand of thinking. I probably would have said the same thing last Christmas.

Once I got home I was talking to my eldest daughter about some people from the hospital and I mentioned the interesting thing about how this little boy has six fingers on each hand and six toes on each foot. "That's not fair!" she exclaimed, "I've only got five!".

In the hospital, everyone is flawed. Some are fatally flawed, which is a horrible thing and luckily in the cardiac section you're spared that mostly, since most kids are just out of a routine operation and will get better and go home.

Like this....

Everyone has a story and everyone has scars, literally. Some have no hair. Some talk to you but are fixed looking at the ceiling while they speak perfectly normally. Half the kids are wheeling round their IV line. The other half are still stuck in bed.

What happened in hospital is I lost the discomfort that goes along with disability. Disability became normality.

There is a facebook page called "Disabled Life Media" which I enjoy. There was a post up there on 7th March of a tweaked goofy grim smile and the caption along the lines of "the face people make when they see a disabled person in the street". I have to say, I cringed. I have pulled that very face at a wheelchair-bound person more than once. I was lost for a bit when I saw that. I obviously could never pull that face again, but what should I do?

I guess I will now just walk on by, say 'excuse me' if I need to get past or make a friendly remark if appropriate. I think though, disability in my world is no longer something which stands out in the way it did before. I may go backwards of course, but for now it's just part of the spectrum and the diversity of the landscape of Melbourne, wherever we are.

And a gratuitous cute shot!

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