Sometimes I forget that our son has Down syndrome. It’s easy to be distracted by his two year old tantrums, his mischievous smile and go getter attitude. Gabe is kind hearted but stubborn. He immediately runs to check on sister when she is having a dramatic, I’m four and the world is over, meltdown. He will climb onto your lap randomly and stretch his little fingers up to stroke your cheek, just to say I love you.
He also destroys things. Opens drawers, pulls things out, throws them on floor. When you confront him, he ducks his head and looks up from under his eyebrows with a sort of sorry smirk. He helps pick up, sometimes, or wanders off to destroy something else. He loves music, he will start to dance the second he hears it. He absolutely cannot resist participating in a round of Itsy Bitsy, or Twinkle Twinkle…
This is a link to an interview by Shante Nixon, where I talked Live on Air about my experience with Baby Noah when he was in NICU (Neonatal ICU). Shante is an advocate for helping parents prepare for their own NICU experience and she contacted me recently to ask if I could share my story. Noah spent the first 217 days of his life in hospital – 3 months each in neonatal and paediatric ICU and a month in general ward. This was the first time I brought up some of the backstory to our journey. Some of it is controversial and some, I hope, helpful.
If you can ignore the 283 “you-know”s I muttered, this was my most revealing interview ever; if you want to skip ahead, I’ve added the Timeline at the bottom of the video.
1:44 – Down Syndrome
3:02 – why I share about Noah
6:32 – hydrops
8:00 – emergency caesarean
8:33 – “people who need people”
28:00 – Google Australia calls
30:00 – “we can’t fix Down Syndrome”
31:20 – motivation
34:40 – “rowdy Arabs”
40:00 – death
45:40 – advice to other parent-entrepreneurs
50:55 – parent-to-parent advice
52:45 – gloating
Overnight at the hospital for what I thought was just precautionary observation. I ended up being wheeled in for emergency caesarean the next day.
First pic of Noah several hours after he was born and wheeled off to NICU. Pic taken by my daughter to show me what he looked like as I was still in the maternity ward in the hospital next door.
Noah immediately after bowel surgery that we thought had gone well. I was called in later that night to be told he was dying.
Card made by nurses at NICU who also cleaned him up and removed all tapes and tubes just to take the photo of his 100 days “birthday”.
Page from diary created and filled in by nurses at NICU for Noah.
Mobile made by NICU nurse in background for Noah.
Guest chef at Google HQ, Sydney, Oct 2012
Taken 3 weeks to the day Noah was born; very obviously pregnant but somehow my bump was missed by most psychics I consulted re: my pregnancy.
Pop-Up event to celebrate “Jackie M’s Return” same day Noah had to go in for emergency heart surgery. Photo courtesy of Patrick Sirisonthi.
Cooking Masterclass series at Grace Hotel, Sydney Nov-Dec 2012. Photo courtesy of James Burgin and Ken Burgin.
Hyde Park Night Noodle Markets Oct 2012. Photo courtesy of Ken Burgin and James Burgin.
Baby Noah leaves hospital after 7 months, one week before Christmas 2012. Photo courtesy of Ian Chow and Cindy Choong.
Early last year I, along with my long-time collaborator Robb Demarest, was invited by Malaysia’s NTV7 to guest star in 5 episodes of their paranormal reality TV show, Seekers. Here is the trailer for the show as aired on NTV7 –
As is the case with any TV production, for a variety of reasons a lot of our experiences and the evidence we gathered never made it into the final cut, and I hope to cover them in future posts.
In the meantime, here is an article I wrote about one of the places we investigated for the show, called Istana Billah. This was originally published in my Digital Magazine, Truly Malaysian but I’m sharing it here due to the inordinate amount of interest in my previous writings about ghosts & the paranormal 🙂
Midnight Shadows at Istana Billah I’ve done more than my fair share of travelling, and many times while in a non-English speaking country I’m expected to speak the local language – French, Japanese, whatever the case may be. In Malaysia, if there’s any doubt about your background, they speak to you in English. Watch any movie in Malaysia and you’ll find not just subtitles, but subtitles in several languages. Maybe our multi-cultural makeup, coupled with our colonial past, have made us very adaptable and linguistically tolerant?
When the opportunity came up for Robb Demarest and I to guest host on Seekers, a local TV show that’s aired in Malay, there was some concern on Robb’s part about the language barrier.
“Don’t be silly”, I told him. “Everybody understands English, they’ll just subtitle your lines in the show, they do that all the time.”
And so it was that the entire production crew communicated with Robb in English. But they also talked to me in English. I put it down to their gracious hospitality – I haven’t lived in Malaysia for nearly 30 years after all, so it’d be fair to assume I’d lost most, if not all, of my Malay language ability.
Anyhow, our second case rolled around and we were investigating Istana Billah, an old castle in Perak that used to be the residence of Raja (King) Billah. The castle stands empty but is maintained by two lady caretakers who live onsite. It has a tiny wooden mosque built within the area and the Chinese locals claimed to hear sounds coming from it at night. There are also reported sightings of an old lady in the mansion.
We were introduced to the history of the castle during the day, and suffice it to say I was pretty creeped out by some of the rooms in the building – one upstairs in particular had holes in the floor. Why? Because that’s where they prepared bodies for burial; the holes were where water from cleaning the bodies would drain out. Then there was another room that was locked up, but we were told it was where funeral ceremonies were conducted. So many death-related activities under the one roof made for a very uncomfortable night ahead for someone like me with a morbid fear of dead bodies.
Now I’m a cook, not a paranormal investigator, so I had no experience at all going into my Seekers stint. But I’ve watched plenty of ghost hunting shows in my time and I didn’t want to fall into the stereotypical screaming crybaby role usually delegated to the female in the team. I had my Hakka pride to maintain, after all.
The castle, whilst not very big, was very dark on the inside, and extremely eerie at night. We started out investigating in groups, but in the middle of the night, the producer decided he wanted me, Jackie M, to stay alone in the castle whilst all the other investigators went back to base. GREAT.
I kept telling myself to keep my cool; the whole place was wired with CCTV cameras after all and everyone would be monitoring me from base camp. “Nothing’s going to happen”, I kept thinking.
So I sat in the pitch black hall with an infra-red camera to try and capture evidence of ghostly activity. I talked to whatever might be out there to see if it would make contact with me. Maybe touch my hair or hand to show they were present in the room? All things that I quietly hoped wouldn’t happen – certainly not when I was alone in a big empty building at night.
There’s a school of thought that paranormal activity happens to those who invite it into their lives. I dwelt on that as, against my better judgement, I continued to implore whatever entities were out there to make contact.
And then I saw it – a shadow near the main doorway about 30 feet away. I froze for a second, thinking the light from the night sky outside must have played a trick on me. Stay calm, I told myself.
It disappeared, but quickly appeared again, and this time I yelled out: “Hello?”
As though in response, a SECOND apparition showed up next to the first.
Again, “Hello?” Still silence. The two dark ghostly shadows stood at the doorway facing me, watching me.
Well, I figured this was an old Malay castle; it would probably make more sense for me to communicate in the local language to whatever ghosts were haunting this place. So, for the first time on this trip, I spoke Malay. “Siapa tu?” (Who’s that?), I tentatively asked the shadowy figure.
It worked. The ghostly response came back, “Ada tengok anjing?”
Alright, my Malay may be rusty after 30 years, but I think the ghosts just asked me if I’d seen any dogs.
“Anjing? Takde, saya tak nampak” (Er, dogs? No, I haven’t seen any).
And so it turned out the ghostly figures were not in fact ghosts, but the two elderly lady caretakers trying to tackle an ongoing stray dog problem.
The upshot of the encounter was that the production crew discovered that Jackie M actually speaks Malay, so thereafter there was no stopping them bantering with me in Bahasa. Not to mention the producer insisting in subsequent episodes that I did my EVP sessions in Malay.
Did I encounter any real paranormal activity in that or any of the other cases? You’ll have to tune in to NTV7’s Seekers Season 9 to find out.
I’m sure most people reading this would think this was a strange angle to tackle on the whole Baby Gammy controversy. After all, why would Ms. Pattaramon (Goy) need defending – she’s been described as a “saint” and an “absolute hero” by Scott Morrison, the Australian Immigration Minister himself, right?
I’ve been following this story quite closely for obvious and not-so-obvious reasons – the parallels in our situations – Down Syndrome baby, AVSD (at least until the latest prognosis that says Gammy does not in fact have a life-threatening heart condition), the family’s street food stall, even photos of Goy and Gammy contrasting her brown skin against his alabaster white complexion, which evoke a sense of familiarity with some of the shots of Noah and me.
Yet, as the story continues to play out in the media, I’ve noticed that support for her is not as monolithic as it appears.
I’ve seen some rumblings about her motives in keeping the baby – insinuations that she’s using him to cash in, headlines that she told the agent she would keep “the dumb baby” (which had the effect of stirring the ire of the politically correct demographic), revelations that once she took on the surrogacy arrangement she moved up in the world from ramshackle hut to not-quite-so ramshackle unit and even had a bit of a spending splurge on nice handbags and clothes or whatever. I could go on.
She’s now hiding from the media thanks to the backlash. That’s a shame. She doesn’t deserve that.
I think it’s important not to lose sight of the facts in amongst all the outrage about Baby Gammy possibly being used as a pawn –
Goy kept the baby, she didn’t choose to abort him.
She did so despite her own financial circumstances, and despite the fact she’s not the biological mother.
She did all this for 6 months BEFORE the international media got hold of the story and money started coming in through donations.
I want to relay a story from a successful Chinese businesswoman I know. She saw that I was bringing Noah with me to trade at my food stalls, and she said she admired my strength. She then revealed her own past to me.
I have to admit in my elementary Cantonese and her not-perfect English (we communicate in a mixture of both) I never fully grasped the medical issues involved in her story. She told me that once upon a time, before her now-grown up children came along, she gave birth to a baby in China.
The doctors pulled her aside and said that based on their medical opinion, the baby had a 90% chance of developing a debilitating brain defect. They told her she had 2 options – to accept the baby and surrender to a life of dealing with his condition – or to leave him behind at the hospital and go home. She chose the latter.
I don’t know what happened to the baby – whether he automatically became a ward of the state, or whether he died, or whether she was in fact scammed by rich people who wanted a child of their own.
Ironically she relayed the story to me to show that she and I had something in common beyond the fact we’re both immigrant Asian businesswomen – the fact that she walked away and got on with her life was a display of the same kind of strength she sees in me.
Back to Goy and baby Gammy – I’m aware her critics are in the minority; I think most people understand. That’s not too different to my situation, as reflected in this extract from an email that was sent to a distribution list about me –
“…she has a disabled baby to whom she parades through FB on weekend markets to pray for sympathy , to show the world she was hard done by. Everything that is going on with her life now or should i say ‘one screwed up life’ is of her own choosing…”
Siblings say the darndest things, don’t they? 😉 Oh and also, anyone who accuses me of sharing Noah for any reason other than to show that life can be a blessing even if you have a Down Syndrome baby – can go to hell.
You can see why I’m irked by any kind of negative second-guessing about Goy’s motives – I experience it myself.
In closing, I’d like to steal a line from Doreen Wilson, one of my Google+ friends. Her re-share of a Gammy news item I had posted carried this quote attributed to someone she knew –
“There’s something wise and maybe….right about accepting your lot in life”.
I’m not disputing it was hard for my Chinese businesswoman friend to abandon her baby, but that Goy chose to take care of Gammy despite everything, I think, deserves our admiration, not scorn.
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.
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.
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 yam 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 once a week to teach additional night classes there. And he’d hire his bus to daytrippers on weekends driving them to the beachside resort of Port Dickson or to 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, and the deafening silence and lack of moral support from most other quarters 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.
The first time I was featured in a half-page spread in the Sydney Morning Herald’s Good Living section, he laminated a copy of it and kept it as a souvenir.
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 couldn’t remember the Malay word 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.
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 façade of normality on social media, I am in reality 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.
Footnote 1) – the day after I posted this, two guys walked into my restaurant and made me an offer on the lease that I couldn’t refuse. My Malaysian food business still exists but the restaurant is no more.
Footnote 2) – the featured image in this post was taken during a pop-up event promoted as a celebration of my return to cooking after taking a few weeks off when Noah was born. A day or two before the pop-up I was advised that Noah needed to have urgent open-heart surgery by which stage we had already sold a lot of tickets, so I opted to go ahead with it. In between posing for the cameras, cooking and giving a speech I was running to the back of the premises to make phonecalls to the hospital for progress reports on Noah.