Awhile back, I was contacted online by a Chinese student who wanted to tell Noah’s story as part of a school assignment.

I’m resharing my letter here because I’m a big fan of repurposing content, plus it’s a good opportunity for me to point my audience to my other website – babyNoah.com.au – which is where I’ll write more about this aspect of my life in due course (I know, I’ve been saying that for months).

This is what I wrote her; keep in mind the language is geared towards her audience-

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Dear Betty,

I’m the sole parent of Noah, a six year old child with Down Syndrome who is classified as severely disabled.

Noah was born with some very complex and serious medical issues which led him to spend the first 7 months of his life in hospital, in the intensive care unit. He’s had two open heart surgeries and a bowel surgery, and he also overcame a rare condition called hydrops fetalis. I was told by the doctors that hydrops together with Down Syndrome was just not survivable, nor was hydrops past the 30-day mark. Noah had hydrops for over 30 days and yet survived, proving the doctors wrong on both counts.

On a number of occasions in hospital, the doctors sat me down to discuss whether I would consider withdrawing treatment for Noah, and I resisted. When Noah was 3 months old, one of the senior doctors had a meeting with me and said that Noah would have to have his second heart surgery immediately because his heart was failing, and because he was so weak, he would need to be hooked up to a heart-lung machine, which would cause brain damage.

On that basis, he suggested I allowed Noah to die rather than to go through with the surgery. He said that if Noah were to survive, I would have to give up everything to look after him around-the-clock, and that my life would never be the same again.

He said that Noah was never going to be a productive member of society anyway, and he reminded me that I wasn’t a young woman and I’d have no-one to look after him when I’m gone, and that he would be a burden to the welfare system. I refused his advice and as a result this doctor kicked Noah out of the neonatal ICU; he said that they had run out of ideas how to treat him, and that to be blunt about it, they needed the bed back.

Noah was transferred to the paediatric ICU, which turned out to be a blessing because with a new set of doctors and treatment suggestions, he started to get better.

People sometimes ask me why I “use Noah as an advertisement” when I share pictures of him on social media. The reason I do so is to show how wrong the doctors were about his prospects for a fulfilling life, and about what my life is like despite having to look after him. I make a point of integrating Noah into everything I do, including when I travel, and when I run my business.

The story did not end when Noah came home from the hospital, because I now find that I fight a different battle, which is his right to be integrated into society. I face resistance when I take Noah with me to work in my business; despite the fact that he is safe and well-looked after and happy, I constantly get people try to stop me from bringing him along. I’ve had anonymous members of the public lodge complaints, raise petitions and one time, even call the police on me because they didn’t think Noah should be with me while I’m working.

Because most of these people choose to remain anonymous, I am generally unclear about their exact motives, but to be generous, I would propose that they think Noah, because of his disability, is not receiving the best care when I bring him with me to work. I’m guessing they think he should be receiving therapy or be left with strangers while I’m working.

Assuming this is their motivation, they are nonetheless discriminating against my son and they’re applying their own judgement on how to raise my child without knowing the full facts – which is that 1) Noah actually LOVES coming to work with me 2) he receives therapy and medical appointments the rest of the week, 3) in fact, coming along with me and experiencing the real world is a wonderful break and experience for him.

I recently came across a story of a mother with a son who has Down Syndrome; she is pretty vocal about the fact that she wishes she had aborted him, because she feels her life has been impeded because of her struggles in raising him, and about the fact that she once had to give up an overseas holiday because of him.

I’m not going to judge her, but I’m here to similarly share my own experience with Noah, which is the complete opposite. I did give up my restaurant to look after him, but I’ve managed to change the direction of my business in such a way that I can both spend more time with Noah as well as continue to share my passion for Malaysian and Southeast Asian cooking through live video broadcasts, recipe writing, travel, teaching, television presenting, and cooking demonstrations.

Noah has brought incredible joy into my life, and he is an inspiration to those who have watched him grow over the years. I believe that how you live your life gives those around you permission to do the same. To that end, apart from sharing photos and videos of him on social media, I write about Noah at www.BabyNoah.com.au (and have also previously done so at www.SerembanGirl.com and www.TheMighty.com). I do it with the hope that other parents in the same shoes can perhaps be emboldened rather than fearful about the possibility of life with a child who has Down Syndrome.

The post Letter To A Student In China first appeared on Jackie M..

On 28 September 2017, two police officers showed up at my weekly Concord Hospital market stall and told me that someone had filed a report about my Down Syndrome child being with me at work.

This was not the first time some anonymous member of the public had lodged a complaint about Noah’s presence at my stall; two years previously, I hit the news when another anonymous campaigner launched a petition to remove him from another market where I had operated for 14 years. I subsequently quit that stall, which leaves me with Concord Hospital Market as the one last remaining weekly event where I earn an income from selling Malaysian food.

At Concord Hospital, around this time last year, a woman came up and yelled at me for “child abuse” and said that she was going to report me to the authorities. I filmed our interaction and ended up being invited on television to talk about it.

Every time I post about this on social media, the average person is perplexed about what the problem is. What’s wrong with a child staying with his mom at work? Why do people get so worked up about it? On what basis would they be lodging their complaint? Some people probably assume I’m doing something wrong to get this kind of attention.

In fact when the story came out on the front page of The Daily Mail 2 years ago, some of the commenters suggested this was a publicity stunt by me looking for my 15 minutes of fame. Others are indignant that I would think I’m entitled to bring my kid to work when they don’t have that privilege (this one always stumps me because it’s so obvious – the difference between my situation and theirs is that I’m my own boss).

The fact is, efforts to thwart my integration of my child with my business have been taking place in more subtle forms since way before these incidents. I understand from my fellow stallholders that people gripe to them about Noah’s presence at the markets. They wonder why I’m not home looking after him or why he’s not in childcare. As if he’s better off with strangers for 8 hours than with his mom in an environment he absolutely loves.

Except for the one woman last year who yelled at me, nobody has had the wherewithal to confront me directly.

Throughout all these years, I’ve tried to address this issue with some level of restraint and diplomacy. I’ve tried to assume these people’s motives are pure but misguided. I’ve suggested it’s probably a cultural issue; that some Westerners find the idea of kids in a work environment to be offensive and an example of poor parenting. I’ve figured in their lack of understanding of my child’s disability, they assume he’s not getting the stimulation he needs to thrive.

My frustration stems from these people’s refusal to engage me respectfully to find out my story. They hide behind a wall of anonymity so I never really know the real motivations behind their actions. I decided to provoke a conversation, so I put up this sign the following week at my stall. Halfway through the day, I was told by the market organisers to pull down the sign based on a complaint by someone at the hospital.

That was the straw that broke the camel’s back. I’m done with diplomacy and I’m done with being a sitting duck for malicious anonymous campaigners.

When I quit my other market stall 2 years ago, one person who had experienced disability discrimination in her own life posted on my Facebook page. She begged me to stay and fight. She said that I have a voice and that I need to use it to speak out for those who don’t. She’s right. This website may be about my baby Noah and our story, but I hope it helps other people out there who are or will be facing these kinds of obstacles in their own lives.

Let’s do this.

Sign the petition >> https://www.change.org/p/concord-hospital-support-baby-noah-s-right-to-stay-with-jackie-m-at-the-markets

The post Enough Is Enough first appeared on Jackie M..

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Recipe by Hotel Jen, Penang

One of the Hotel Jen recipes that didn’t make it into our video series during my recent trip there was Nasi Ulam, a herbed rice salad dish.

Nasi Ulam wasn’t something I was familiar with growing up in the southern part of the Malaysian peninsula, but it is popular in a variety of forms in Indonesia, southern Thailand and northern Malaysia. I’m actually more familiar with the Kelantan version which is known as Nasi Kerabu – due to having eaten it numerous times at Aspaliza’s house and even running a Hangout-on-Air on it (yes, recipe for Nasi Kerabu to come!).

The Penang version has a light and refreshing twist to it, thanks to the Nyonya influence on the island’s cuisine. I was told one of the most important ingredients in this dish is the bunga kantan aka ginger flower bud; this goes some way towards explaining my delay in sharing this recipe (fine, procrastination factored into it as well) – after many years of searching I’ve only just managed to find bunga kantan, albeit in frozen form, here in Sydney.

Some of the other herbs and greens include pennywort leaves, ulam raja (literally, the King’s salad) aka cosmos caudatus and daun kadok aka wild pepper leaves. Most of these are available in Thai and Vietnamese grocery or vegetable stores around Sydney.

I would suggest in the absence of these herbs that you use what is more readily available in your part of the world – combined with the other elements – belacan (shrimp paste), dried shrimp, salted fish and pounded coconut – it makes for a tantalizing and flavoursome experience.

Nasi Ulam

Ingredients – 

600g cold, cooked rice

30g Dried shrimp

30g Dried salted fish

50g Shallots, sliced

1 Bunga kantan (ginger flower bud)

3 pcs Daun kadok leaves (wild pepper leaves)

5-7 Pegaga leaves (pennywort)

5 stalks Ulam Raja (cosmos caudatus)

1 stalk Lemon grass

30g Fresh Turmeric

30 pcs Kaffir lime leaves

15g Fried ground coconut (kerisik)

10g Belacan

5g Black pepper, crushed

Method – 

1. Wash and clean the vegetables.
2. Cut all greens, slice thinly; chop lemongrass & fresh turmeric.
3. Bake the dried shrimp and salted fish for 10 minutes in a pre-heated oven at > 150C.
4. Pound the dried shrimp and salted fish together.
5. Mix all ingredients with rice, season to taste and serve.

The post How to Make Nasi Ulam Penang first appeared on Jackie M..