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.
This article was written by my long-time collaborator Robb Demarest, and first published in my e-Mag, Truly Malaysian, regarding our guest stint on Malaysian TV network NTV7’s Seekers. An American paranormal investigator with a background in psychology, business, teaching and martial arts, Robb is best known for his lead roles in Ghost Hunters International and Haunting: Australia.
Ghost Hunting in Penang
I found myself alone in a small room at the Penang War Museum. Sitting in a chair, with my backpack of equipment and a walkie-talkie in hand, the room itself was fairly simple, a few posters and plaques obscured by the blackness. What made this room distinct was not what was there now, but what had happened there in the past. Countless murders of prisoners of war were said to have occurred in this very place, and it was quite clearly evidenced by the bullet markings that pocked the cement walls.
The Penang War Museum does not sugarcoat the violence and war time atrocities that took place on this isolated hill. A raw look into the history of the WWII Bukit Maung fortress turned Japanese army base is but one example of a larger theme of Malaysia – Malaysia doesn’t sugarcoat anything. History is told boldly, people laugh loudly, the colors are vibrant, and the fish looks like fish. In many countries the fish is de-boned, deep-fried, pan-seared, and breaded to look more like a grilled cheese sandwich than a fresh-from-the-sea tuna, but in Malaysia’s many road-side cafeteria-style restaurants a fish looks like a fish.
This, somehow, brings us back to the Penang War Museum and what I was doing there sitting in a room with bullet riddled walls.
In January 2013, Malaysian media broadcaster NTV7 invited Jackie M and I to fly to Malaysia as guest investigators on their popular long-running paranormal television program, Seekers. To say Jackie and I were excited at the opportunity is an understatement. When your passion becomes your occupation it is supposed to be the best of both worlds. I have looked for ghosts in 30+ countries around the globe, but after several years of living out of a suitcase, my passion had become more of a purgatory… I still enjoyed what I did, but the excitement and intensity with which I did it had waned considerably.
So I took a break to pursue other interests, and found that my passion for the paranormal was re-invigorated. Packing up the suitcase again, in preparation for filming Seekers in Malaysia, the excitement was back. I was once more bouncing around like a child and brimming with anticipation at the prospect of diving headlong into the unknown.
The fortress at Bukit Maung has a dark history. During a surprise attack in 1941 it fell to the invading Japanese army and was subsequently used as an army base and prisoner of war camp. In the years after the war the 20 acre military installation was abandoned, the reputation of hauntings by ghosts of tortured soldiers enough to keep the locals away, but then in the mid-1970’s the area was restored and reborn as the Penang War Museum. We were there with the Seekers crew to delve into decades of paranormal activity.
Seated in that lone chair I pulled from my backpack an experimental device that attempts to enable communication with ghosts. The device creates an echo effect, emitting syllables of words in the hopes that the spirits will combine the syllables, and it sat humming quietly away to itself as I asked a series of questions into the air. At precisely the point where I began to doubt that any communication was going to take place, the device came to life and a male voice uttered “help”. My heart, admittedly, skipped a beat.
I answered back into the wall of darkness looking for confirmation that this phantom voice had asked for help. The device spat back immediately “HELP!” in the same male voice. With few viable choices available for response, I asked what did it want me to do. The room was silent for a few moments until a small girl’s voice responded, “to die”. Now, in many situations like this (if any situation can really be much like this) you choose between fight or flight. However in this moment neither was viable; I was alone in the room so fighting seemed useless, I couldn’t run because my pride wouldn’t allow it. So instead, I went with option C -I turned off the device.
The next voice I heard was over the walkie talkie from the producer who was monitoring the situation via the camera.
“Uhh Robb?”, he stated in his deep gravelly voice.
“Yes…” I replied while hoping my voice wouldn’t crack.
“Turn the device back on?”
“This thing just said it wants me to die. YOU come turn it back on” I shot back.
From the safety of another room, “I’m not the ghost hunter”, was his reply. That pretty much settled that and I did as instructed. When I turned the device on things proceeded to go from bad to much worse, although to see how you’ll have to watch the episode when it airs. Suffice it to say, in Malaysia, even the ghosts don’t sugarcoat.
This was only one part of our adventure; the energy and excitement of Malaysia helped me rediscover my passion, and for that I am quite thankful. I hope to return to Malaysia soon to continue my attempts to document the presence of life after death, and once again thoroughly enjoy my time in a country where a fish looks like a fish.
Some photos in this post were supplied by Mediaprima with thanks.
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 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.
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.