Tread Gently...

My father is strong. As an indigent child growing up in a fatherless immigrant family (7 boys, one very unfortunate girl), he was riddled with disease, had no teeth and was taunted for being a ‘menuvel’ – a Yiddish word which makes ‘ugly’ seem like a compliment. When he was 12 he realised the only way to escape the ‘menuvel’ jeers (which, incidentally, also came from his own mother) was to be tougher, bigger, quicker. He took up boxing. From that day on he exercised every day of his life, doing gym, weights, running. He adhered to a menacingly strict diet. No salt, no sugar, no fun. My father, unlike my portly self, has literally never had an inch of fat on his body.

Also unlike my dad, I grew up in an incredibly secure environment. (Emotionally secure, that is. The fact that I slept with a panic button in my hand had more to do with apartheid politics than my family dynamics). I knew that if I ever got myself into some terrible situation, my tough, strong, clever father would extract me from it. This is a very spoilt position to be in. It gives one the freedom to behave like a dilettante. At fourteen, I hitch-hiked home from clubs in dangerous areas wearing short skirts. I went on holidays with friends without organising anywhere to stay (what eighteen year old boy refuses a few eager fourteen year old girls his spare bed?). I drank and smoked and swore at policemen and felt invincible. Having a granite-solid father means you never have to grow up.

Today, I walk through the horribly familiar hospital ward, searching through the hacking, spluttering patients for my dad. I thought children’s hospitals were tough. In the cardio ward of an adult hospital there are no colourful paintings, no visiting clowns, no outward signs of hope. My dad is hard to recognise. He is small and frail and has a series of gashing stitches down his chest and on his neck. He survived the six-hour operation, something we were all secretly fearing he may not. So there is relief. The doctors are happy with him – being in such general good health will definitely help his recovery. But there is no simple three-act structure here. He is not heading back to the gym any time soon to a cheering audience. Rehabilitation will be long. And boring. And tediously difficult. And right now as I kiss my dad’s leathery face he looks harrowed. And I want to ask him what I could do about the ligament pain I’m getting. And discuss his thoughts on whether we should take a house we’ve seen in a suburb we’re not sure about. And speak to him about trying to help me get an earlier appointment for O’s renal scan. But suddenly I am forced to find the answers myself. And instead I ask him if he would like some cold water and if I can massage his stiff shoulders and whether he wants me to read him The New York Review of Books. And he nods, tired.

Everyone told me that the moment I became a parent I would be forced to grow up. This year, of a baby with physiological problems and a twin pregnancy and hospitals and doctors and hospitals and doctors and tests and tests and tests has been my year of growing up. I’ve resisted it. I’ve resented it. I’ve tried hard to rail against it. But now, as I bend to kiss my father on his head, I am suddenly an adult.

My father grew up when he was 12. I’ve been allowed the luxury of waiting until I’m 33.
But is still hurts the same. Like a deep, open pit of pain that no-one can rescue me from but myself. But there’s something else as well. A freedom. A growth. A feeling that from now on in, I’m going to hold my own hand.
Tight.

Has anyone seen my toes?

So I’ve moved from hurt and anguish through anger to action. I’ve seen the physio again and we’ve devised a rehab program for little O. It’s only a few days into the program and already she’s taking more weight on her pudgy little legs. Particularly if I distract her by singing inane songs and making absurd faces. Before I was a mother, I had something resembling inhibitions. Now, I have no shame. If singing Baa Baa Black sheep while imitating a ferret helps little O walk, I’m your black-sheep-singing-ferret-faced girl.

And then I paused before my dad went into hospital to take a long awaited call from my script editor. He’s just finished another screenplay and finally has time to meet with me to discuss the next phase of my script.

Script?

Am I writing a script?

Oh slam a barge pole into me and remind me I once used to be professional. Arsehole doctors I’m learning how to handle, but now I’m expected to wrangle my script as well?

Have a meeting set up for the new year which means I’m going to have to find time to actually read my work and fathom where I want to take it. Taking it to the garbage tip seems like the cowardly option.

And in pregnancy news my lower back has decided to refer pain to my quadricep. I’d really rather it referred it elsewhere. Like to the shmuck of a doctor who told me O won’t walk.

Off to visit my soon to be part-porcine father. Surgery tomorrow. Babe, Pig in the City next week.

You Can Choose Your Friends...

Synchronicity can be a beautiful thing. She’s the big, fun sister of Coincidence. Usually, she’s benevolent. She helps you find a great book on a bench just as you’re bemoaning the lack of something interesting to read. She facilitates an accidental meeting with the man you’re madlusting for just after you’ve had your hair done. She ensures your sister-in-law has finished having her children when you start having yours so you inherit an entire wardrobe of lovely baby clothes.

Usually, Synchronicity smiles on me but today, the day I’m due to take O to the Spina Bifida clinic, she’s pissed off. The morning starts at 4AM with O screaming her guts out. She’s in pain, uncomfortable and tired. We spend four hours consoling her then R has to leave for work and I’m left trying to contain her pain while my back aches from the pressure of the ever-growing twins. An hour later, I bundle her into the car and we’re off to the hospital for the dreaded Spina B appointment. The first face I see as I’m entering the waiting room is the angry boy (now man) I used to look after ten years ago. Sydney isn’t that small of a city. There are at least ten hospitals with spinal wards. Why would I be confronted with the one person I know who has a neural tube defect in this entire town? He’s still in a wheelchair, the hump on his back even more pronounced than I remember it, but his face has changed. He looks peaceful. I greet him. He recognises me, is polite, charming even. I note the easy way he jokes with the doctors and nurses who minister to him. I know I should feel happy, relieved that he’s less belligerent, at peace. But something about his ease is making me terribly uncomfortable. He’s accepted his fate, I realise. He’s not fighting anymore. He knows he’s lost.

I don’t have too much time to dwell on my placid friend before Doctor Loud Bowtie grabs my hand, squeezes O’s cheek and welcomes us to the clinic. He’s irritatingly friendly as he explains O will be seen by several doctors this morning. It’s the team approach that helps “these kids” get proper treatment, he claims. A good theory, but with O and I both utterly exhausted from the morning’s shenanigans, the prospect of seeing seven doctors in a row is as appealing as having my teeth removed by a Nazi with a bleeding gum fetish.

First up is a neurologist. He’s young. And cocky. He tests O’s reflexes and pokes her with a sharp implement in various body bits, all the while making me repeat her entire medical history to him. When he’s finished, he smiles paternally. Yes, he says, she has diminished sensation in certain parts of her legs and buttocks. You do realise there’s a chance she May Never Walk.

He said it.

The thing I’ve been fearing and hiding from and praying no-one ever says.

But she moves her legs, I tell him, quickly. Like I can eat up the words his said if I just talk fast enough.
Yes, he says, but does she take weight on them?
No, I stammer, but she’s recently had spinal surgery and she’s been in hospital six times in ten months and she-
He stops me. It’s a matter of wait and see, he tells me. The urologist will see you next.

I stumble through 5 more doctors, scarce hearing them as I repeat O’s medical history with less and less coherence. All I can think of is the neurologist’s flippant words.
She May Never Walk.

I manage to gather that the urologists will order a scan of her bladder and kidneys. I’m not sure I want to know why. The orthopaedic surgeon examines her and says he doesn’t think she’ll need orthopaedic surgery but will reassess her regularly. The neurosurgeon examines the scar on her back and mutters something about being lucky the cord was tethered low rather than high. And the rest, I’m afraid, is a blur. Until we get to the final medical professional – the physiotherapist. She takes one look at O and comments on how lovely her leg movements are. That’s all is takes, someone being nice. I start to cry the tears of a mentally unstable woman (they’re huge fuckers, these particular tears, and they come with an unnaturally guttural heaving noise which resembles a cow in labour). The physio quickly draws the curtains around us and tries to console me. I explain what the neurologist said. She shoots a dagger glare his way and reminds me that doctors are often trained to give you the worst-case scenario. Yes, O will need help learning to walk, but it can’t be said that it won’t happen. She tells me she won’t do an assessment on O now, I should come to the clinic in the New Year and we can do it then. When I feel better. It doesn’t even bother me that she’s using the tone I’m sure she reserves for schizophrenics and small animals.

I stagger away. Dr Loud Bowtie puts his arm around me and tells me he hopes my first visit to the clinic wasn’t too traumatic. He’ll get “the girls” to make me another appointment for January. You’ll get used to it, he assures me. It’s all a lot to take in the first time. The more he talks, the more panicked I become. I don’t want to get used to it, I don’t want to ever have to come back, why don’t these people and their tests and their invasive implements and predictions about my daughter just leave us alone? I feel myself slip so far off the precipe of rationality I almost reach New Zealand.

But it’s the final words that Dr Bowtie hurls at me that push me into a new dimension of madness.

Welcome to The Family, he says.

And no matter how far away I push O’s stroller, I can’t help but fear we’re going to be forever related to these people in ways I haven’t even begun to imagine.

How Jewish is he?

And because there is always something to laugh at, I give you this:

We recently found out that the valves my dad will be implanted with to replace his leaky ones were formerly owned by a pig. Or perhaps two pigs. The cardio-surgeon wasn’t clear on the specifics. (He also balked at my question of whether the pigs were male or female. For some reason the idea that my dad will soon be part sow makes me smile). You must understand that my father is the Jewishest man you could ever meet. His DNA is in the shape of a magen dovid. If it wasn’t against the religion to tattoo yourself, he would definitely have JEWBOY inked across his face. He can use the word Jew ten times per sentence and never tire of it. The man’s a Yiddeshe Pappa of the Yiddeshest kind. And he’s about to become semi-porcine.

Being a medical man, he wasn’t as shocked as I was to discover the close DNA link between our chubby pink friends and ourselves. But he’s still deeply disturbed by the idea that an animal his people shuns is soon to save his life. I jokingly ask him if he’s told my Rabbi brother that he’s going to have a Chazah heart. He reminds me that my brother tore out all the pages of his daughter's copy of Old McDonald’s Farm that had pigs on them. Best I don’t mention it, then.

So last week, I’m at the hospital and I get an attack of the voracious hungers that I’ve only ever experienced when pregnant. It’s a hunger that makes you understand how those footballers stranded in the Andes ate their goalkeeper’s leg (he may not have actually been the goalkeeper, but goalie is the crappest position on the team so I figure if anyone was going to be dinner it would be him). I head off to the dreadful hospital cafeteria and discover I’ve missed lunch hour. The only thing left over is a solitary veal schnitzel. I’m not a veal eater but I reason that it won’t push my blood sugar too high and my twins can do with the protein.

The first bite and I’m struck by how fatty and salty the meat is. I persevere. The second bite. There’s something not right with this veal. I press on to the third bite then examine the pinky insides. A sick feeling floods my previously pork-free body and I rush to the counter, stammering - is there p-pork in this?
That’s veal cordon bleu, love, replies the weather-beaten lunch lady
Veal, ham and cheese.

And suddenly it makes perfect sense. We’re in the hospital – they use the heart for valve replacement surgery and send the belly down to the canteen for veal cordon bleu. Greed has stolen my pig-ginity from me. I have just eaten from the same God loving pig who sacrificed her sorry pink life to save my dad’s. I’m an evil daughter. I’m a bad Jew.

Worst of all, I have a hankering for one more wafer-thin slice of Yummy. Fatty. Greasy. Pig.

Do you really want to know?

Cynicism is the last refuge of the idealist.

Not sure who said that first but I remember realising when I was a teenager that to be cynical you need to have expectations that are disappointed. To have expectations you need to be idealistic, to believe people won’t let you down, that things will ultimately be ok, that Michael Jackson isn’t actually a paedophile. He’s just a very friendly daddy.

So maybe I was a sucker to expect this would be the last of O’s operations. That it would end here. Closing the colostomy is meant to be the simple part. That dreadful, nasty poo bag would finally be gone. That had to be good, right? At first it looked like it was.

A week in hospital. A long week. A hot week. The hottest recorded this year in fact. Walking up and down with my heaving belly from the dingy motel to O’s hospital room, telling myself that at least when this is over she’ll never have to set foot in a hospital again.

But doctors will be doctors.

Just when you think they’ve pulled everything they have from the Nasty Surprise bag, they whack out a monster with five heads and one squinting eye.

As the surgeon is about to discharge O he tells us he wants to talk to us about the pathology report. The rest of what he says is something that R and I may debate till the day we jump off the world together, but it definitely involved the words ‘abnormal intestinal cells’ and ‘neuronal intestinal dysplasia’ (that one I wrote down) and finally ‘no actual cure’. Leaving us gobsmacked, he shakes hands with R and wishes us a Merry Christmas. I hear myself mumble a non-denominational seasonal greeting and then the words ‘neuronal intestinal dysplasia’ shit themselves onto my brain.

One and a half hours to drive home and try recreate the conversation. R says he thinks the doctor said O may have it but isn’t sure. I’m pretty convinced he said she does have it. Neither of us are clear on what ‘it’ actually is. What’s clear is that O is in pain.

As we get home we leap onto the Internet. Various sites tell us Neuronal Intestinal Dysplasia is an incurable bowel disorder which can have horrible social and emotional effects and has been known to cause depression and suicide in sufferers.

This is where I feel My Self, my Strong, Coping Self, tumble into the abyss.

I read about NID KIDS (a cute name that won’t make the disease any more palatable) who have to be escorted to the toilet by their teachers. Imagine the humiliation? The social stigma? I read reports from despairing parents who are desperate to find a cure. And then I stop reading because the room is swaying from side to side and I’m heavy with grief and loss and shock.

I insist that we phone the doctor back, even though it’s a weekend. We call but get hold of the registrar. He’s non-committal. The kind of man who tells his mother he sort of got his semi-girlfriend a bit pregnant. He tells us there are support groups we can join and we should call the doctor directly on Monday. Two days to wait.

I feel myself crumble. All the strength and calm and stability I’ve been projecting for the entire year slips into a shadowy heap. I cry and cry and cry. The whole weekend. Friends phone and text to ask if we’re back from hospital, if O is on the mend. Some comment that it’s great that this was the last of it and now everything is ‘fixed’. I don’t call anyone back.

O continues to be in pain, crying out, waking every ten minutes. She’s not used to having to use her bowel and she strains and pushes and screams. She's constipated. Even removing part of her bowel hasn't helped that.

My back and legs go into spasm and keep me up the whole night. The twins inside me kick and punch and knock about. I suspect they’re angry with me for ignoring them. I check my blood sugar. Dangerously high. I give myself a hit of insulin, wishing I could follow with a chaser of smack. Just as I drift to sleep, two cats start fucking outside our window. Deathly screeches. I remember that a cat penis has claw-like glands in it that dig into a female cat’s vagina so she can’t escape his clutches. I think about a recently invented anti-rape device in South Africa that women insert into their vaginas. It clamps into any penis that enters. Then the words ‘no cure’ and ‘suicide and depression’ leap into my consciousness.

And it’s Monday morning. And I don’t even remember what happens before I speak to the doctor but he’s angry. We shouldn’t have called the registrar. No need to panic. Yes, there are abnormal cells associated with NID but that’s not a conclusive diagnosis. In fact, he thinks the cells are more a function of the bowel not being used for so many months. He very much doubts O has NID.

WHY THE FUCK DIDN’T HE SAY THAT 2 DAYS AGO?

She’ll still need ongoing treatment and management with diet and medicine, but he doesn’t see any more surgery necessary.

WHY THE FUCK DIDN’T HE SAY THAT 2 DAYS AGO?

I’m so relieved and confused that I start crying but have to fake composure. Nothing can lose credibility with a doctor like open crying. We say goodbye and I think I wish him happy holidays again. I may even mention Kwaanza and Chanukah. I have to keep my credibility in tact, you understand.

Then I realise I’m late for O’s appointment with the neurosurgeon.

This appointment I’m not worried about. He’s just going to check the spinal wound to see it’s healed. Then he’ll tell us to come back in a year for an MRI. Just routine.

But doctors will be doctors.

After he’s checked the wound, he casually mentions that he’s concerned about O’s bladder. We’ve never had it scanned and children with bowel and spine problems usually have associated bladder problems.

What? No-one’s mentioned that before.

He asks me if she has bladder control. Now call me ignorant, but do you know any ten month old with bladder control? She wees in a nappy for Christ’s sake!

I ask him how I’d be able to ascertain her bladder control. He tells me there’s no real way for a layperson to tell. Which is why he’d like her to attend regular sessions at the Spina Bifida clinic.

The Spina Bifida Clinic.

I once looked after a teenager with Spina Bifida. He was incontinent and angry. He had a large hump on his back that had to be constantly drained. He would have murdered someone with glee – possibly my good self - if he could have moved out of his wheelchair to reach the knife.

The doctor offhandedly tells me O’s condition falls broadly into the category ‘spina bifida’. He’s never mentioned this before and I immediately tell him I took folate months before she was conceived and continued throughout the pregnancy. He nods. This is one neural tube condition that doesn’t respond to folate, he says, handing me a referral for the clinic and ushering me out of his office. Don’t worry, he attempts, it’s not the serious spina bifida. Before I leave I hear a thin voice lurch out my throat “She will walk, won’t she?”. He pats me paternalistically. Most of them do, he says.

Most of Them.

Things I want to change in the world this week:

1. The fact that my father has to have double valve replacement heart surgery next week.

2. Medical training. Teach doctors the power of the words they casually fling at people. Test their empathy levels before unleashing them on the public.

3. Set a limit to how many doctors one patient can see in any given month. Limit this to one. The amount of doctors I have to see each month is currently:

For O:
Gastroenterologist
Bowel surgeon
Neurologist
Neurosurgeon
Stoma Nurse (thankfully I have my last post-op meeting with her soon)
Physiotherapist
Spina Bifida Clinic urologist
GP for immunisation

For me
GP for referrals
Obstetrician
Endocrinologist
Diabetes Educator
Nutritionist
Chiropractor

I suspect ‘Psychiatrist’ and ‘Lobotomy surgeon’ will be future additions to my list.

You're only a day away...

Packing for hospital for O’s surgery tomorrow. I’ve packed Panties, Anticipation, Fear and Hope. Hopefully I’ll only need the panties.

My parents spent yesterday waiting at the airport to be finally given the last 2 seats on the plane. My mom asked if they could supply my dad with a wheelchair. The attendant asked which team he was with – Australia or New Zealand. He didn’t think football alliances ran so deep. Then he noticed 30 paraplegic men wheeling themselves towards the departure gate in airport wheelchairs. What are the chances of my dad being denied a wheelchair because he happens to be on the same plane as the veteran’s paraplegic basketball team? Apparently he asked one of the larger players if he could sit on his lap. Can’t keep a good man down.

He managed to walk slowly onto the plane and is now home in bed, awaiting his appointment with the cardiologist.

And we are off to the hospital on the other side of the universe, so I’ll be off the blogosphere for a week. But your warm fuzzies will follow me all the way into the ward, surrounding little O with their lovely fuzzines, helping her heal.

Anyone who had a heart...

It’s mildly amusing that I now have to add cardiologists to my list of doctors to see this week. By amusing, I mean to say horrendously frightening. I often get the two mixed up. My dad is still stuck in South Africa unable to get a flight back for the surgery. He is on stabilising drugs so they’re keeping his heartrate down, but they want him to be operated on as soon as he gets back here. Ultimately it’s all about money. If he had it, he could pay for a flight. Or for surgery in South Africa. Given that he flew on a frequent flyers ticket, the airline whose name shall not be mentioned but who is the only airline to start with a Q, will not issue him a ticket. He’s on a couple of standby lists so they expect him to turn up at the airport daily, hooked up to oxygen, to wait for ticket cancellations. Compassion and making money seem to be natural adversaries.

So I’m doing the rounds of the cardiologists, trying to set up appointments for him without knowing when he’s getting back.

Me: He’s on standby so it could be any day now.
Cardiologist’s secretary: We can’t make an appointment until you know when he’s back.
Me: It’s an emergency. Can we book something provisionally?
Cardiologist’s secretary: We can’t make an appointment until you know when he’s back.
Me: He’s back on Wednesday
Cardiologist’s secretary: But you just said…
Me: I was confused. (Awkward giggle)
Pause
Me: Hello? Hello?
Engaged signal.

And after speaking to 4 gastroenterologists and surgeons we have decided to agree to the bowel resection for O on Tuesday. One of the doctors thought it was the worst thing we could do, an insanely cowboyish action on behalf of the surgeon. The other three said we'd be negligent not to do the operation. I’ve laboured over the decision and realise that I need to be guided by the majority of the doctors, something I find frightening. By frightening I mean FUCK WHAT IF WE MAKE THE WRONG DECISION AND CAUSE OUR LOVELY CHILD TO BE INCONTINENT FOR LIFE??? I often get the two mixed up.

On the plus side, I thought I was having contractions but it turned out to be a bad case of Indian food. See, things could be worse...