Gratitude – Ester Wimborne

When I was about 15, we had a very special guest from Australia come stay with us in Temiang, Seremban.

She was considerate to a fault, and wrote us a detailed, thank you letter on the day she left to return home. It was lengthy, and it mentioned every person who had helped make her stay comfortable , even in the most negligible ways.

I read and translated it for my parents, and was annoyed by the end of it. Why? Because it didn’t mention ME. Unbeknownst to her, my stepmom had made me give up my third blanket for her before she arrived – we had been short on blankets, and I had three.

Three layers of blankets in non-air conditioned, tropical Malaysia is ridiculous overkill – it wasn’t like I was at risk of catching pneumonia by being deprived of one of them for a week or two. Fully aware that there was no way she could’ve known about it, the unintentional slight was nonetheless a big deal to my self-absorbed, chip-on-the-shoulder, teenaged self.

Why am I bringing this up? Because for the longest time, I’d been meaning to write a post mentioning all the acts of kindness I’ve encountered over the last 2 years in relation to baby Noah. I wanted to name names but was a little paranoid about unintentionally missing out on some people in the process, the way our Seremban guest had done. Clearly most people aren’t the self-absorbed, immature teenager that I once was, and would probably give me a pass, but my attempt at diligence (assisted by a healthy dose of procrastination) meant I kept putting it off. I wish I hadn’t.

Ester Wimborne

Ester Wimborne (pic courtesy of Liz Posmyk – http://bizzylizzysgoodthings.com)

I’m splitting this post into two parts because I want to give special mention to Ester Wimborne. Ester, a fellow market stallholder and Country Valley Dairy distributor, was one of the first people to reach out to me via Twitter even before Noah was born. I had been diagnosed with gestational diabetes during my pregnancy and was required to test my blood sugar levels after every meal.

I found that the chocolate mousse carried by Country Valley Dairy was one product that tested within the “safe” blood sugar range post-consumption, so I ate it with abandon during my pregnancy. I ordered them week-in week-out from Ester’s Sunday stall and asked her to pass them onto my Marrickville staff since I was (and continue to be) rarely there in person. She often gave me extra free samples of other products and always heavily discounted everything.

Our communications continued when Noah arrived – Ester was one of many people who compassionately messaged me online when I first revealed Noah’s condition. She was one of those who continued to show an interest even after he left hospital – regularly checking in via Twitter to see how we were doing, despite fighting her own since-diagnosed life-threatening illness.

We always meant to catch up one day but because we both ran market stalls at different locations, we never got around to it. Amidst my conflicted feelings about social media and my cynicism about some of its participants, Ester stood out as someone who was both genuine and generous in spirit – to me, she represented the best of cyberspace.

I’ve always thanked Ester on Twitter in response to her follow-ups on Noah; I’ve never thanked her in person.  In fact, in the hustle and bustle of running my own market stall it occurred to me a few weeks ago that the friendly woman I had served minutes earlier at Orange Grove Farmers’ Market might have been Ester – based on what I’d seen of her in pictures. And then I promptly thought no more of it, figuring I’d catch up with her another time at another market, when we both had more time to chat.

Ester was killed in an accident on the way to her Sunday Marrickville stall two days ago. The scenario resonates as a food producer and fellow market stallholder. I understand the early starts on weekends, the long hours and the “jumping in at a moment’s notice” nature of running your own business – heck, she wasn’t even supposed to have been working that day.

I wish I’d thanked her more fully, beyond my glib Twitter replies; I wish I had taken time to finally meet up with her in person.  Ester was an absolutely beautiful, larger-than-life, generous, kind-hearted spirit and my life is richer for having known her, even if it was only in cyberspace. I thank you for the love you showed, Ester, and I look forward to telling Noah about you one day.

 

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Tang Sifu (1927-2014)

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Dad passed away two weeks ago – on the first day of Chinese New Year 2014. I flew out to Melbourne for some Tourism Malaysia commitments a few hours later, came home in time for the funeral, then flew out again for Malaysia a few days after that for work. I got back yesterday, was hit with a high fever, popped some pills and went to bed. Worked all day today feeling under the weather throughout, then popped more painkillers and took a nap.

I’d been thinking on the way home that I should pay my stepmom a visit tomorrow, and with that in my consciousness, I dreamt that’s what I did. In my dream, my dad was there, in his study – and he greeted me with a big smile. And he was healthy, and studying the Bible.

I miss you, Dad.

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Tang SiFu

I’ve never been hugged by my dad.  Growing up, I was under no illusion that I was anywhere near the favourite of his 9 kids.

I thought he was harsh, dictatorial, mean-spirited; I couldn’t stand watching him pander to those with social standing.  I was appalled when he once grabbed a little Indian kid out of the Odeon by the ear and told him never to come back.  The kid had been hawking curry puffs from a basket and the way my dad saw it, was threatening our own livelihood.

He was never quite sure how old I was, let alone remember my birthdays.  He once threatened to break my legs for wearing shorts.  It was a rough relationship and I used it to milk for sympathy from anyone who would listen.

Ironically it took a privileged Scandinavian to help me see things from a different perspective.  I had relayed these stories to Steffen (my boyfriend at the time) in anticipation that it would win me some brownie points; his response took me aback and somewhat annoyed me.

Yes, but did he remember ANY of his kids’ birthdays?  Did he hug ANY of his kids?  Never having met my dad, Steffen, at all of 21, was nevertheless wise enough to the fact that my dad probably had a tough upbringing and A LOT of responsibilities AND was of a different era and culture where affection was not freely displayed etc. etc. etc.  But, but, but – what about his tolerance towards some of my other siblings’ perceived misbehaviour and hardline towards mine?  By that stage, even I knew I was splitting hairs.

My dad, Wa Koy Tang, was born in 1927 in Malaysia from immigrant Chinese parents.  His dad was an alcoholic who died when my dad was some 13 years of age.   Dad had to leave school to take up the breadwinner mantle for the family, having only completed primary school education.  There are gaps in my knowledge of his early years; I know he was sent to labour camp during the Japanese occupation of Malaya, where he worked for a not-completely-evil Japanese industrialist.

He was fed a diet solely comprised of sweet potato which made his face swell up – it gave his mom some relief when she finally got to see him after a long absence, thinking he must have been well-fed by his oppressors, when in fact he was severely malnourished and at the brink of death.  It was also during this stint in the labour camp that he developed an injury to his knee that was to haunt him late in life.

His marriage to my mom was pre-arranged; he met her when she first got off the boat from China – they were both kids back then.  He laughed when he relayed in his twilight years that he thought at the time she was really ugly, with buck teeth.

My parents went on to have 10 kids, 9 of whom made it to adulthood.  My dad worked 20-hour days 7 days a week – that’s 20 hours of hard, physical labour.  He started out selling street food; was enterprising enough to diversify, eventually taking up a canteen at the Odeon Cinema.

He borrowed money from friends to buy a bus and start a school bus run.  He then started a factory bus run.  He ran most of these ventures at the same time.  On top of that, he somehow managed to find time to learn, and excel in, martial arts.  And lead a martial arts school in Seremban, earning him the title of “Tang Sifu” (Master Tang) among his followers.  He even travelled to Port Dickson some twenty miles away for awhile to teach additional night classes there.  And he’d hire his bus to daytrippers on weekends driving them to PD or KL.

As a kid, I once found a very nice sketch of a girl back when we were living in Templer Flats.  I tried to cut her out with a pair of scissors so I could play dress-ups with her, but with my poor scissor skills, I accidentally chopped her head off.  Growing up in relative poverty does not preclude one from throwing a tantrum, and I did – I wanted whoever drew that picture to do another one.  Nobody owned up to it, so my stepmom helpfully tried to replicate the drawing to appease me.  Her sketch was awful and I bawled my eyes out.  It wasn’t until many years later that I found out the mystery artist was in fact my dad.

I’ll never fully learn the scope of my dad’s talents.  I know that despite having very little education, he could speak every Chinese dialect, some of which are so obscure I’ve (still) never heard of them.  He could communicate in Malay and seemed to have a better and quicker grasp of English on arrival in Australia than his much younger wife, despite never having learned them formally.

Back in Malaysia he would watch English movies and TV shows without subtitles and understand the entire plot and get the gist of the dialogue without knowing the language.  My dad never had the privilege of education, never had the luxury of indulging in his creativity and exploring his potential; he worked himself nearly to death, driving his buses till, on many occasions, he could no longer keep his eyes open.

And when it came to the dinner table, he always let his family eat first, claiming he was full until there were only scraps left for him.  Only when my stepmom threatened to throw out the leftovers, would he reluctantly eat up.  This pattern of behaviour continued his entire life, even when his kids were all grown up and we were no longer impoverished or in danger of ever going hungry again.

In “throwing away” all my higher education and promising career to pursue my passion for Malaysian food, my dad was the ONLY person in my family who seemed to get it.  My family doesn’t get it; my stepmom with her occasional nagging about my waste of a good education in doing what I do, and the deafening silence and lack of moral support from most other quarters (would it kill some of my family to “Like” some of my FB posts every now and then, really??) are the kind of stuff I’ve resigned myself to.

And yet, the gleam in my dad’s eyes when he occasionally inquired about how things were going made it all worthwhile – he’d ask with a smile about adding this dish or that dish to my repertoire, reminisce about his own experience in selling the same dishes back in his younger days; show an interest in the business – and show pride in some of my achievements.

My dad is dying.  He’s suffering from dementia and doesn’t have much time left.  He sleeps most of the day and my stepmom looks after him.  He shows signs of lucidity once in awhile, eg. when interacting with baby Noah, even if I doubt he really knows who he is.  Recently at family dinner, my brother-in-law who’s been in Australia probably about half a century, tried to crack a joke by speaking very broken Malay to my dad.  He gave up when he didn’t know the words for “fishing”.  My dad, seeming to be in his own little world up to that point, piped up – “pancing ikan!”  Happy Father’s day, Dad.  I love you.

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Letter to My Customers

To all our valued customers,

This is a screendump of an email I received earlier this week -

“ …If you are charging $ 16 for a plate of rojak, we have high expectation that  it is of utmost palatable quality. My simple homemade rojak is definitely better. ” I asked Gwen for her bank details and refunded her money immediately.  Vani ALWAYS asks each table how the food was after their meal , so I’m perplexed why she didn’t speak up at the time, but whatever.

Here’s another one from Brindha several weeks prior, complaining about the service whilst complimenting us on the food – “I am terribly sorry to have to write an email like this to you.  However, I hope that some improvement can be made to the service so that it complements how good the food is and doesn’t deter people from coming to your restaurant”.

Which I would’ve taken somewhat more seriously if her group hadn’t simultaneously  posted on a review site – “..Please spend another few $$$ and go somewhere erse (sp)…Far the worst place I have ever been in Sydney, very disappointed as I took my in laws with me.”

These are just two examples, a number of others have crept up online over the last couple of weeks and if I were to be analytical about it, I would say they coincided with the media exposure I have been receiving of late – a combination of elevated expectations and a case of the tall poppy syndrome.

Every few months or so, I get approached by interested parties offering to buy me out, and it has been something I’ve considered on and off, in particular some 18 months ago when faced with the prospect of a difficult pregnancy and the knowledge that I would be raising a disabled child alone.   My crew had been adamant we kept going, hence why I’ve stuck around.

The fact is, despite the smiles in the Noah homecoming video after 7 months in hospital, behind all the cute Noah pictures and videos, one sobering reality remains, and that is that Noah is still a very sick baby who needs round-the-clock care and who may not make it past his third birthday.

And behind the silly competitions and the smartass remarks made during the Taste of Sydney cooking demonstrations and on Social Media; behind the newspaper mentions, TV appearances, overseas travel and general goofing around with the Jackie M crew, I am still a single parent providing full-time care to Noah whilst trying to navigate (without much success) the intricate web of government assistance and early intervention programmes along with running a business.

Consequently, ever since his birth 10 months ago when I would stay with him in the ICU daily and right up to the present day, I have generally been absent from the day-to-day running of the restaurant.

In my absence, there are no doubt some quality control issues that have crept in that we need to address and because of that, starting this week, I will be back in the kitchen supervising everything  whilst keeping Noah in the adjacent room downstairs that currently works as a storage room, so I can make sure our staff are consistent with the meals that get served.

I continue to run the markets myself largely because I can’t find anyone to replace me, and when Noah got distressed one day by the heat and smoke and general chaos of Leichhardt, I dropped him off home, put him to sleep and came back out to load up my van and leave.  When I relayed that to one of my fellow stallholders, they made a veiled threat to report me to the authorities for leaving a child at home, so I made a point of always having him with me after that.  (For what it’s worth he was still sound asleep when I got back home, but before you defend the lady’s actions, I get it.)

Two weeks ago, at a different market, I received a phonecall a day prior to advise that someone’s reported to the authorities that I’ve been bringing a baby there, and that the occupational health and safety inspector would be around to check the next day, hence why I’ve had to hire an extra person and make myself scarce in between setup and pulldown.

You can appreciate why I would feel under siege of late and why the prospect of bailing seems somewhat more palatable than Gwen’s experience of my rojak.

Anyway, as I said above, I concede we need to address some quality control issues with our food.

Other swipes eg. about our uncomfortable seating/basic toilet facilities etc. will NOT be fixed.  The fact is, despite the high rent and overheads, my premises do NOT come with a toilet, so you are in fact coming up to my private living quarters and using my bathroom when you ask for the amenities.  You’re welcome to hold it in until you leave, but if you’re going to use my bathroom, have the decency not to complain about its lack of frills online.  And if my seats are not good enough for you, you’re really missing the point of Malaysian street food.

So from now on, I’m back in the kitchen, and if it becomes too much, we will cross that bridge at a later stage.  If I need to travel for work or am double-booked and am not sufficiently confident that the restaurant kitchen is in good hands, I will close it for the duration.

To all my patient and longsuffering customers, thank you for cutting me some slack this whole time.  To those who don’t know my circumstances, well, here it is, now you know.  To all the other detractors, “please spend another few $$$ and go somewhere erse” as Brindha’s group would say.

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Baby Noah’s Journey

Several weeks ago, in my first group meeting held with all the different medical teams at Westmead Children’s Hospital, I floated the idea of having Noah home by Christmas, notwithstanding any deterioration in his condition.

I’m grateful for the doctors and nurses who worked together to that aim, and on 17 December, baby Noah was finally discharged after spending the first 7+ months of his life at Westmead Children’s Hospital.

I’ve attached 2 videos here, one of which is a slideshow of photos taken since Noah’s birth, and the second, shot and compiled by Ian Chow (a second edit, with text added by me in some of the photos – the first edit was shared on Ian’s Vimeo channel a week or so back).

No amount of words or images could do justice to the gratitude I feel for the staff at Westmead and for the public support I’ve received especially via Twitter (many from people I may never meet in person).  I thank you all for keeping me going in the worst of times.

I’m loathe to single out people for praise but it’d be remiss of me not to mention Dr. Sandra Heck at Grace Ward who was instrumental, I believe, in saving Noah’s life in more than one instance.  Also nurse Rebecca (who couldn’t stop saying “oh my goodness” in the homecoming video) – Noah’s first diary entries were by her, and her care and attention towards him during his first 3 months were not unnoticed.  And of course, Cheryl, Noah’s Ward Granny, a volunteer who was a retired nurse herself, for spending Mondays and Tuesdays with him the last couple of months of his stay at Westmead.

Noah’s journey is by no means over; he has pulmonary hypertension and respiratory problems and has endless hospital appointments ahead of him.  For now, however, I am grateful to be able to end the year with this critical chapter of his life behind us.

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Baby Noah

Compiled by Ian Chow through stitching together some images and videos from my public posts regarding Baby Noah.

The doctors are aiming for a discharge date of Monday 17 December; he still has a couple of hurdles to overcome before then, but I’m hopeful that at 7 months, he will get to leave the hospital at long last.

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Letter to My Baby 7 October 2012

Dear Baby Noah,

You’re nearly 5 months old now and you’ve yet to leave the hospital.  You came very close earlier this week, when they transferred you out of the ICU for the first time, to the general ward.  Mommy was told you could be home within weeks; days even.  Just like the last time when you had just had the pulmonary band put in your heart and they sat me down with notes on how to tube-feed you when you came home for a little while (which didn’t happen because you got sick again) until your full heart bypass, this time they gave me notes and instructions on the ventilation equipment that would be coming home with us.  I guess I won’t be needing those anytime soon either because you got very sick and they had to transfer you back to the ICU.

Mommy often gets asked how I do the things I do.  Some people think I’m strong to keep carrying on with the business; others probably think it’s tacky that I look like I have too much of a good time goofing around online and with my crew while you’re sick in hospital.

But you know mommy visits you every single day that I can and we cuddle for hours alone except for the handful of visitors you’ve had since you were born.  I joke that the bills aren’t going to pay themselves, but the truth is I don’t need to be running such a complex, expansive business.  I could sell up and I did consider that for awhile before you were born; then I could spend every waking hour with you without worrying about staffing issues here and placing grocery orders there and disputing incorrect charges and wrong deliveries and dealing with compliance requirements and marketing and promotional activities and the fifty million other things that come with being a business owner.

Even with what was known before you were born, nobody could guess how much more confronting your problems have been – Down’s, AVSD, duodenal atresia, hydrops, pulmonary artery banding, chronic lung disease, pulmonary hypertension, post-surgery leakage between the right atrium and left ventricle – your case is as complex as has confronted the doctors at the ICU, at a hospital that takes in the sickest babies in all of NSW and even overseas.

You’ve nearly died 3 times now, first when you were delivered and they had to resuscitate you, then two middle-of-the-night calls for me to come in, once right after your bowel surgery and another time when your hydrops that they thought had gone away, came back.  Then there was the time when your heart started failing sooner than they had expected, and because you were too little, they decided to put in a temporary band around the artery to buy you a little time.  Mommy had a pop-up restaurant event happening that night so I couldn’t be with you during the surgery.  I couldn’t cancel because they didn’t give me enough notice about it.  So in-between speeches and smiling for the cameras mommy was calling the hospital for updates on a surgery that I was told beforehand there was a 5% chance of you dying on the operating table, though the test would be how you held up post-surgery.

Then they thought you could come home for a couple of months before your big open heart surgery, so one of the supervising nurses sat me down and went through the whole feeding tube thing with me because you would need to be tube-fed for a long time.  And other stuff like getting my borrowed baby capsule fitted by a certified mechanic, and how I would need to stay overnight at the hospital with you alone in a room, and spend time taking you out in a pram in the hospital grounds to acclimate both of us to having you home.  I was dizzy with excitement that night.

But the next day I was told your heart had started failing again and the neonatologists wanted you to have your bypass right away because they figured you’re never going to get better and they might as well risk it, but the surgeons refused to do the operation because they didn’t want to play the role of ‘executioners’ and wanted to wait.  And I was told if they waited you might in fact get worse and they’d never be able to operate, and also that you might need to be hooked up to an ECMO machine during the surgery because of your chronic lung disease, which would cause permanent developmental damage especially for someone with Down Syndrome.

Mommy has been confronted with the possibility of you dying even before you were born.  Everywhere I turned it seemed people thought I was better off terminating the pregnancy.  I was told most Down Syndrome babies don’t make it to term anyway; it was “nature’s way” of dealing with defects.   And when you had your first life-saving surgery 2 weeks after birth, I was told everything had gone well, only to be called in and told you were at death’s door.

They were running blood tests on you every hour overnight and your condition was deteriorating despite everything they tried.  Then mommy showed up at 4am and for the first time, it seemed the reading was marginally better.  The supervising neonatologist was on the phone with the surgeon and as a last resort had wanted him to cut you open again to make sure nothing was missed earlier in the day, that wasn’t showing up in the X-Ray.  They decided to wait until the next hourly blood test before they wheeled you into theater and again, it showed a slight improvement, and it continued to improve after that.  Thank God they didn’t cut you open again because I think that would have killed you; you were 2.2kg and so incredibly fragile.

To treat your hydrops, they had been giving you steroids and were shunting fluid out of your body.  They stopped the steroids when you had your first surgery, and sealed off the shunt because it looked like all the fluids had been drained and you were okay.  Then your tummy kept getting bigger and I was told you were fine; the doctors had been keeping a close eye on it and there was nothing to worry about.

At 5 weeks old, Mommy even posted a picture of you on Twitter and people were making jokes about your big tummy.   That night, I got another phonecall to come in and was told you were dying; that the hydrops had in fact not gone away and the fluid gathering around your tummy was now infected.  They resumed the shunting and the steroids (which they weren’t sure had helped in the first place – there’s no known, fixed cure for hydrops) and I was called into the office by the night supervising neonatologist and was told that it wasn’t looking good; that in fact if you were to have recovered from hydrops, you would have done so within the first 30 days.

The day supervisor started her shift and she called me in for a meeting as well.  She was even more blunt – she said that hydrops plus Down’s is in fact not survivable and I should arrange for someone to be with me for when you die, especially if I wanted to capture the event on video as a keepsake.

I demanded she backed up her statement with statistics, but she wasn’t able to provide any because she said, most such pregnancies don’t make it to term.  They’d stopped feeding you because you weren’t tolerating it – I’d been expressing milk every day and labelling them diligently in the ward freezer, and they weren’t being used, and I couldn’t bear the thought of emptying out the bottles if you didn’t make it, so I stopped that day.  I had also, after 5 weeks, just sent off your birth registration forms the day before after waiting for your health to improve, and now faced the prospect of having your birth certificate arrive in the mail after I had buried you.  I think that was the first and only time I broke down at the hospital, really.

Then when I got home that night I googled hydrops + Down’s and found a case in a parenting forum where the baby did make it, so that renewed my resolve.  And I chose not to make arrangements for when you died, just like I chose to turn down the offer of the free professional photography session before your heart surgery where the nurses would specially remove all the tubes and tapes from your face beforehand so I would have photos of you as a ‘normal’ baby in case you didn’t make it out alive.

And I reiterated to the neonatologists that palliative care was off the table; I wanted them to throw the book at you where it came to saving your life.  They told me from their experience most parents get antsy at about the 6-8 week mark, when life starts to get in the way of the hospital and that’s when most lose their resolve to fight.  And that I might change my mind after watching you scream for the hundredth time as they pin you down to try and draw blood from you for tests (you don’t bleed easily), and I might then just want to hold you and let you die peacefully in my arms.  I said it wasn’t going to happen; I was in for the long haul.  That I get that my life would be so much “easier” without you; that if it was about convenience, I would have aborted you during the pregnancy.  So the next time I was “sat down” for a chat, the neonatologist took a different tack.

He said that in his opinion, after everything you’ve already been through, he doesn’t think you’ll ever be a productive human being; you will need round-the-clock care, and whilst he knew from watching me that I would be up to whatever I was confronted with, that I needed to consider what would happen to you after I’m gone; that you would be a ward of the state; that therefore I should give in and let you die, which you would, without the heart surgery.

That made me mad.  He’s basically saying that you will be a burden on society and therefore don’t deserve to live.  And that’s why mommy does what I do.  I run my business from your bedside; I take restaurant reservations, negotiate business deals, do conference calls via Skype and Google Hangout, hold meetings at the hospital cafeteria, do media interviews etc. while I’m cuddling you in my arms.  I’m building a little empire for you, baby Noah, so that you will one day be the envy of “normal” kids, not the liability that the doctors predict you will be.

Now with this latest setback mommy will have to wait a little longer before I can show you off to the world.  But it will happen, my little Hakka warrior.  Just you wait.

Posted in Baby Noah, Family, Sydney | Tagged , , , , , | 16 Comments