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..

The closest I’d gotten to joining a cruise was when I was approached by another cruise line a couple of years prior about doing a TV commercial for them. Their ship was due to set sail in 3 days, so I had to decline – not enough notice. I have to admit though, I’d since kicked myself a couple of times for turning them down. (ps. Any cruise companies out there still interested in securing my services, I’m all ears, )

I’ve compiled a 2.5-minute highlights video for those behind the campaign, so they can get a glimpse of how much we enjoyed ourselves.

I’m also hopeful it’ll give you an idea of what a Carnival Cruise is like, if like me, you’re a total cruise noob.

Here are some other details about our trip –

Destinations –

1. Isle of Pines
2. Lifou
3. Mare
4. Noumea

There was a change in the itinerary due to bad weather conditions (we were originally meant to go to Mystery Island, not Isle of Pines).

We were at sea for 4 days before making landfall.

Some (hopefully) useful info –

• On boarding day, you’ll be going through Customs and Immigration so you’ll need your passports, and you’ll have to fill out the outgoing passenger cards like what you get at the airport, and go through security.

• On arrival, you get cabin access cards that contain your ID and billing info, so you will be using the card not just to get into your room but also for all onboard purchases and when you get off the ship etc. You won’t need to carry any cash with you while on the ship.
• There’s a safety drill and briefing before the ship sails. This takes probably an hour or so, where you have to congregate at designated areas depending on the code on your access card.

• You get a newsletter delivered to your room daily, containing all the following day’s activities and any important announcements.
• You have 2 options re: mealtimes – you can have them at the buffet upstairs, or at the a la carte restaurant, Truffles, downstairs. Truffles’ menu consists of a mix of daily specials and permanent selections. NB Truffles’ breakfast/lunch hours vary from day to day, so make sure you check your newsletter to find out.

• As a solo traveller with an active toddler, I found it much easier to eat at Truffles than to navigate the buffet queues while trying to manage trays of food and Noah at the same time.

• For special occasions you can pay an optional $45 pp for a deluxe dinner at Nouveaux Restaurant on the top floor – with dishes like lobster and steak. It’s so good I went 4 times over the 10 day period.

• Internet access is bought on a 24-hour or full cruise basis ie. you can’t just pay for an hour’s access etc. even at the onboard internet cafe. The packages vary from “social media only” to “email and websites” to “video/Skype”. Only one device can be connected at a time. FYI you won’t be able to watch videos (eg. ones embedded in websites, or linked in social media posts) unless you have the premium package.

• Service on board the ship is exceptional, especially the staff at Truffles.

• “Tenders” refer to the boats they use to transfer you between the ship and the islands.

• Pack some elegant clothes; even on casual nights, I noticed most people liked to dress up for mealtimes. No flip-flops allowed in the restaurants.

• Back at Sydney Terminal at the end of your cruise, there’s no luggage trolleys to load your bags onto, after you’ve collected them. Weird, huh? I had to get a staff member to help with ours, since, apart from 2 sets of luggage I also had to push Noah in his stroller.

There you have it, hit me up if you have any questions, and once again, I want to thank the Inner West Mums FB group and Carnival Cruises for sending Noah and me on this fantastic adventure.

The post 10-Day Pacific Islands Cruise – Carnival Legend first appeared on Jackie M..

This is the interview I did on Studio Ten last Friday regarding baby Noah and the controversy about having him with me at my markets (I haven’t watched it; I steer clear of watching myself on TV). Noah was meant to have been in the studio with me but he was unusually unsettled that morning (typical!) so someone had to keep him company out in the courtyard. Thank you to everyone at Channel Ten for your patience and grace that morning in the face of a crying toddler

My heartfelt thanks also to everyone for your ongoing support and in particular to the incredible women at the Inner West Mums Facebook group who rallied together to raise funds that will be used by Carnival Cruises to give Noah and me a holiday.

In all honesty I’m a little embarrassed at the level of attention this has garnered, yet at the same time I am reminded of an early comment about the OGM story by someone who had similarly faced disability discrimination in her life. In exhorting me to return to the market, she said (I’m paraphrasing) – You can’t give up; you need to fight this. You have a voice. You need to speak for all of us.

This is why I posted about this latest incident, and why I agreed to the Inner West Mums’ offer of a free holiday. In doing so, I hope to help raise awareness about an issue faced by other parents, in particular those raising children with special needs.

The post Video – Baby Noah on Channel Ten’s Studio Ten first appeared on Jackie M..

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I’m very sorry to let you know that after having given it much thought, I’ve decided not to return to Orange Grove Market.

My smaller vehicle is just not capable of fitting all the equipment and food I need to bring to make OGM a viable proposition for me.

Some of you have asked why I don’t just hire a bigger van for Saturdays. That’s a fair question and the answer is the same as why I didn’t replace my old Hiace after it died on the way to another event awhile back (https://www.youtube.com/watch?v=sh1m1Xnrf-0) with something similar – goods vans are not equipped for child seats and even after paying for expensive modifications, traffic cops are generally suspicious of them (I know – I was fined twice driving my old van with Noah in it).

Frankly, after 14 years, it’s time to move on. I’m still very active online creating food and travel content, plus I’ll be running the occasional pop-up lunch or dinner and cooking workshop, so I hope you’ll continue to keep in touch via this newsletter.

I’m not looking for another market per say though if you work someplace with a high concentration of people and open space where I can pop up my tent to serve your colleagues a CKT lunch every now and then, I would love to hear from you. For that to happen I would need to make two trips with my vehicle (in other words an early start like at OGM won’t work), plus I like to keep it simple (no special diet requests, sorry. Your paleo-dieting etc. friends will have to make their own arrangements).

Also, if there’s enough interest (let me know by replying to this email) I’ll make small batches of my curry pastes for delivery via courier within the Sydney metro area maybe once a fortnight.

Thanks again for your ongoing support, and I look forward to our paths crossing even if it’s only when I make the occasional visit to OGM as a customer

Jackie M.

The post I’m Not Going Back to Orange Grove Market first appeared on Jackie M..

A week is a long time in social media.

When I received the phonecall a week ago today about the pending complaint about baby Noah, I felt duty-bound to immediately inform my followers that I was going to quit my Saturday market.

I posted the announcement across my social media accounts and within an hour or two the mainstream media had caught hold of the story.

The market organisers saw my announcement at the same time as everyone else. They weren’t aware of the complaint because the phonecall did not come from them – it came from a well-meaning staff member on the ground at OGM who felt I should know that it was about to be lodged.

I was and still am a bit frustrated at the cloak of anonymity around this member of the public and the stallholders who had indicated they would support the complaint.

Frankly the way it was conveyed to me evoked images of metaphorical mobs with pitchforks – it was one thing to have some random person disapprove of the way I choose to raise my baby, but if I’d lost the support of my fellow stallholders, it did not seem tenable for me to continue trading.

My post last Friday titled Why I’m Quitting was written with that sense of paranoia hanging over me.

When I turned up the next day at OGM, I kept wondering who among the stallholders were responsible for wanting Noah removed. By the end of that Saturday, I had come to realise that the VAST majority of the stallholders at OGM in fact fully support Noah’s presence at the market.

Over the course of the last week I have been inundated with messages of support from the public.

I’ve had strangers email me offering to babysit Noah for free, people asking if they could start petitions, a surge in online orders from people who for all I know probably don’t even care for Malaysian food, and I’ve had three lawyers offering pro bono legal services.

I am completely humbled and touched by your support, and frankly quite stunned that my announcement could have received so much attention.

There have also been calls for people to boycott OGM. This is extremely unfortunate.

I don’t deny that there has been some mismanagement of the issue from the start. But to boycott the entire market because of one complainant and for all I know, just one or two stallholders, would be hugely unfair.

Too many good people rely on OGM for their livelihoods.

I’ve worked alongside some of them for over ten years. I remember the very first morning I showed up at OGM, I hit the (bacon and egg) Bowens’ station wagon with my decrepit van as I was pulling up to my stall space.

I was mortified that I was going to be in debt even before I started my new business venture, but Brendan Bowen took a look, shrugged his shoulders and went about the rest of his day like it never happened. Brendan and his wife Kate are some of the best, most hardworking people I’ve ever met in all my years of trading.

I remember I took in $180 in sales on my first day there. After rent there wasn’t even enough to pay the teenage kid from my church who I’d hired to help me at the stall. When I tried to pay Rudy at the end of the day, he adamantly refused to accept my money. (Over the next few years I would run the stall by myself until I could afford workers.)

I also discovered that Australians have no appetite for spicy curries for breakfast so the next week I repackaged them as frozen meals. I introduced Breakfast Roti aka Roti Kaya (ie. flaky flat bread spread with pandan jam) so I wouldn’t be twiddling my thumbs until lunchtime.

For the record “breakfast roti with kaya” isn’t a “thing” in Malaysia – it was the start of my journey towards what I’d like to call “adapting to local tastes”, or, what some Malaysian purists consider a bastardisation of their cuisine.

During the 7 months baby Noah was in the hospital, Anne the bookseller’s teenage son used to come over to say hello at my stall every morning. He too had spent an extended period in the ICU when he was born.

In my darkest days there was pressure from the medical staff for me to consider withdrawing treatment for Noah. They brought up the fact that it was more humane to let him expire than (among other things) to keep drawing blood from his bruised veins for more tests.

I asked Anne’s son once, whether he remembered or was traumatised by his early days in hospital. He laughed and said no, and that gave me new resolve to tell the doctors to throw the book at Noah as far as treatment was concerned. To this day I don’t know if Anne had urged him to come talk to me every morning to give me hope.

When baby Noah came out of hospital, Anne gave me a portable cot that she’d seconded from her own family, so I could keep him in it on market days.

The Arlingtons were getting updates about baby Noah even before he was discharged; they’re extremely fond of him, having watched him grow since he came home one week before Christmas 2012.

At least 50% of baby Noah’s wardrobe is made up of clothes from Brydie (Arlington) Derham’s own son – every few months she hands me bulging bagfuls of clothing for Noah.

Sandra, who runs the vegetable stall behind mine, helps take Noah off my hands for the best part of an hour every week – it took months of perseverance on her part because for reasons known only to Noah, he quite hilariously did not warm to her for the longest time, though they’re now like best buddies.

Beatrice from the hemp clothing stall put it most succinctly in the SBS news piece – the fact that people have no problems leaving their kids at childcare from 7am to 7pm while they go to work, leaving their kids to be raised by strangers, and yet they find issues with me bringing Noah to work with me.

Fourteen years is a long time to have run a stall at OGM, and I’ve come away with a lifetime of incredible memories and friendships.

The stallholders at OGM are good people. The OGM organisers have always supported their stallholders bringing their kids with them.

I, for one, plan to continue supporting the market wholeheartedly. For those who have been calling for boycott, I hope from the bottom of my heart you will reconsider.

Photos courtesy of the Orange Grove Market Facebook page.

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The post Why You Shouldn’t Boycott Orange Grove Market first appeared on Jackie M..

This is the reason why I’ve been scaling back – 

Ever since Noah was discharged from the ICU over 2 years ago, I’ve brought him with me to all my markets and festivals. And from Day 1, I have been subjected to attempts to have him removed from these settings. Sometimes it’s members of the public expressing their disapproval, other times it is market organisers outright banning him (eg. at Hyde Park Night Noodle Markets last year).

I like to think of this as a clash of cultures. A large segment of the Australian public feels strongly about the separation of work and family. They think I’m shortchanging Noah by bringing him along to work.

They think I should be spending quality time with him at home, or paying a nanny $25 per hour to look after him offsite. Sometimes the issue of workplace safety is brought up as the reason, even though Noah is not kept within the confines of my stall where the cooking is done, but rather in a portable cot outside its perimeter.

The organisers of Orange Grove Farmers’ Market have always been supportive of Noah’s presence at this event and this is, in fact, why OGM is one of only 2 markets at which I still operate.

I received a phonecall yesterday – a heads-up, if you will, that a member of the public has been attempting to rally support to have Noah removed from OGM over the last month.

They’ve not approached me about it – I don’t know who they are – but rather the stallholders (some of whom I consider friends) around me. Apparently they’ve gained some traction and their next step is to lodge an official complaint. I’m guessing that Child Protection Services will be notified about my activities.

For this reason, I’ve decided to quit OGM after fourteen years of trading at this market. If this were a one-off I would probably have resisted, but as mentioned above, this is a process of attrition that has been taking place over the last 2.5 years since Noah left the hospital.

Remember the FB photo of the little Filipino kid who was doing his homework by the light of the McDonald’s next to his mom’s hawker stall? I think the Australian public sees Noah that way, and feels he should be removed from such hardship. Contrary to some of the online outrage that Noah is being discriminated against because of his disability, I think this person thinks they’re looking out for him BECAUSE of it. I don’t really know I guess; like I said, they’ve never approached me about it.

You know what’s ironic about the situation? The Filipino kid’s reality isn’t far removed at all from my own upbringing back in the day in Malaysia – my parents started out as street food vendors and we grew up around the family business.

For the record my family is made up of high-achieving, productive members of society who bear no scars from having had to hang out with mom and dad at work 7 days a week. Some of our best dinner table stories revolve around our Odeon cinema canteen (dad’s stall) exploits.

Noah’s favourite day of the week is Saturday at OGM.

Often when I pull up at the market he starts giggling with delight as he realises where we are. He loves interacting with the customers. He loves walking around the market.

My staff and I take turns to break up his day with visits to the miniature ponies and the jumping castle and to say hello to the other stallholders.

Baby Noah is going to miss OGM.

My biggest concern now is for my staff and how I can replace their income through a different gig that does not bring us under this scrutiny.

As for me, after 14 years of 4am starts, I’m kind  of looking forward to sleeping in on Saturdays.

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Read more…

SBS News (July 2015) Interview: Mother quits market stall after complaints about son with Down Syndrome.

Daily Life (July 2015) Interview: When the urge to ‘protect’ a child is really a judgement.

The Daily Telegraph (July 2015) Interview: Chef and mum quits Orange Grove Markets after complaints about her Down syndrome son.

Daily Mail Australia (July 2015) Interview: ‘The stall was his favourite day of the week’: Single mum devastated as she is forced to close down her market stall because people complained about her Down’s syndrome son who she takes to work with her.

The Huffington Post (July 2015) Kunden beschwerten sich über den Sohn einer Imbiss-Mitarbeiterin, weil sie seinen Anblick nicht ertragen konnten.

The post Why I’m Quitting first appeared on Jackie M..

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For the record, my Laksa Nyonya refers to the laksa inspired by Melaka’s nyonya culture. There are, broadly, (I’m emphasizing this word to pre-empt complaints that I’ve missed out on mentioning the pockets of Nyonya populations in other parts of Malaysia/Indonesia/Thailand/Singapore with their own culinary nuances – yes, I’m aware of that) two concentrations of Nyonya settlements in the peninsula – in Melaka and Penang.

For the uninitiated, Nyonya/Baba/Peranakan are terms used to refer to Chinese settlers in the Malay straits between the 15th and 17th centuries; as most of these early immigrants were male, they intermarried with local women, resulting in (among other things) a cuisine that reflects this kind of fusion of flavours.

Generally, the southern (Melaka-Singapore) Nyonya food tends to employ a lot of creamy coconut flavours, whereas up north in Penang, the influence of Thailand is evident through the sour notes in its dishes (hence Asam Laksa).

For the record, the highlight of my laksa adventure in Penang was in fact something called Siamese laksa (which despite its name does not taste like the typical laksa you might find in Thailand) – this was something akin to a combination of Asam Laksa and Laksa Lemak – ie. it’s sour but also quite rich and coconut-y. I’m told this is also sometimes referred to as Asam Laksa Lemak – which makes sense. Quite delicious – I stumbled upon the place at the bottom of Kek Lok Si Temple – and the operator is actually a Thai lady married to a local man.

Anyway, extended preamble aside, here’s the recipe for my Laksa Nyonya – and it’s my own twist on a dish that is generally seen to be a time-consuming exercise if made from scratch. I employ a lot of hacks in my cooking thanks to years of running my now-defunct restaurant – something borne out of necessity because labour was and continues to be an ongoing problem in my business.

Laksa Nyonya in 15 Minutes

Click to watch on YouTube >> https://www.youtube.com/watch?v=0SYOzvyIgTw

Ingredients for laksa paste –

• 1 cup fried shallots

• ¼ cup minced garlic

• 1/2 Tbsp galangal powder

• 1 tsp turmeric powder

• 1 Tbsp belacan powder

• ¼ cup minced dried shrimp

• 2 ½ Tbsp minced lemongrass

• ½ – ¾ cup chilli paste (from soaked, blended dried chillies)

• 3 Tbsp sugar

• 4 Tbsp chicken stock granules

• 200 ml vegetable oil

For the soup –

1/2 cup laksa paste

250 ml coconut cream
3 cups water
5 Tofu puffs, halved

500 g noodles, blanched
1/2 Lebanese cucumber, cut into thin strips
100 g Beansprouts
2 sprigs laksa leaves, aka Vietnamese mint, optional
Poached seafood or chicken slices as desired.
1 boiled egg, peeled and halved

The post How to Make Laksa Nyonya in 15 Minutes first appeared on Jackie M..

Although I mostly post personal stories at my other blog – www.SerembanGirl.com – I thought I might reshare this here since Noah is such an integral part of my business.

Some of you have followed Noah’s story since Day One but many others don’t know about him (as evidenced by the regularity with which I get asked when I’ll open another restaurant – FYI I quit my restaurant because of his illness).

The following is written in the third person but by me (I like when people ask whether I write my own content because it presupposes that I can actually afford writers).

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Born in May 2012 with Down Syndrome, non-immune hydrops, AVSD and duodenal atresia, Noah spent the first 7 months of his life in NICU (neonatal ICU) and PICU (pediatric ICU) at Sydney’s Westmead Children’s Hospital.

Against all odds, Noah recovered from a prolonged bout with hydrops fetalis – a rare condition with no fixed cure that according to the doctors was not survivable for Down Syndrome babies.

During his time in the ICU Noah also underwent a lifesaving bowel surgery and two open heart surgeries along with a number of other exploratory procedures.

Noah’s condition improved gradually and in November 2012, his mom raised the possibility with his doctors, of having him home by Christmas.

Because of his stormy and complex medical history, there were numerous medical teams looking after different aspects of his care.

Confronted with this request from Noah’s mom, all the medical teams rallied together and coordinated their efforts to help Noah meet the milestones required for him to be discharged.

One week before Christmas 2012, Noah was finally considered stable enough and he made it home from Westmead after spending his first 217 days in hospital.

Video of Noah’s homecoming –

Today, Noah can often be seen in his portable cot at places where his mom runs her Malaysian food business, winning the hearts of customers and passers-by with his jovial and happy demeanour.

His mom, Jackie M, has made it her mission to help raise awareness of Down Syndrome and to provide inspiration and moral support to others and in particular to single parents through Noah’s story.

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ps. (back to first person)

This week was a huge milestone for both of us, because Noah finally got a place in childcare. Whatever reputation I have as a Curry Nazi, warranted or otherwise, I nonetheless worried about how he would fit in because he’s about half the size of the kids in his age group and very developmentally delayed.

Turns out he loves it and is having a fantastic time there, so he’ll be spending Mondays and Tuesdays at childcare from now on.

The post Who is Baby Noah? first appeared on Jackie M..

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I receive my itinerary from the tour designer, Diana, a couple of days before I leave Sydney. Right away, I spot a familiar name in the document.

My tour guide is going to be Mr. Shaukani Abbas, who is a mutual Facebook friend of Aspaliza.

I’d been hanging out with Aspaliza every trip back home in the last year. What a small world, indeed.

Shaukani is famous on Facebook for posting travel photos of people holding signs that say “WISH YOU WERE HERE” and “YOU SHOULD BE HERE”.

That’s why I remember him – it’s quite a clever way to set yourself apart from the bazillion Facebook posts that cross my page each day.

[Best_Wordpress_Gallery id=”13″ gal_title=”Shaukani”]

Yet, if he thinks I’m going to be caught posing with such cheesy signs myself, he has another think coming.

No way, Jose, Mr. Shaukani.

[Best_Wordpress_Gallery id=”14″ gal_title=”You Should Be Here”]

(Continues…)

Tour Designer – S. Diana Nasution

Tour Company – People Express Travel, KL

Tour Package – 6D/5N Culture, Heritage and Nature Delight

Read Travel Diary Part 1 >> http://jackiem.com.au/2014/12/28/travel-diary-kampung-baru-kl-part-1/

The post Travel Diary – Kampung Baru, KL (Part 2) first appeared on Jackie M..