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.
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.
Several weeks ago, in my first group meeting held with all the different medical teams at Westmead Children’s Hospital, I floated the idea of having Noah home by Christmas, notwithstanding any deterioration in his condition.
I’m grateful for the doctors and nurses who worked together to that aim, and on 17 December, baby Noah was finally discharged after spending the first 7+ months of his life at Westmead Children’s Hospital.
I’ve attached 2 videos here, one of which is a slideshow of photos taken since Noah’s birth, and the second, shot and compiled by Ian Chow (a second edit, with text added by me in some of the photos – the first edit was shared on Ian’s Vimeo channel a week or so back).
No amount of words or images could do justice to the gratitude I feel for the staff at Westmead and for the public support I’ve received especially via Twitter (many from people I may never meet in person). I thank you all for keeping me going in the worst of times.
I’m loathe to single out people for praise but it’d be remiss of me not to mention Dr. Sandra Heck at Grace Ward who was instrumental, I believe, in saving Noah’s life in more than one instance. Also nurse Rebecca (who couldn’t stop saying “oh my goodness” in the homecoming video) – Noah’s first diary entries were by her, and her care and attention towards him during his first 3 months were not unnoticed. And of course, Cheryl, Noah’s Ward Granny, a volunteer who was a retired nurse herself, for spending Mondays and Tuesdays with him the last couple of months of his stay at Westmead.
Noah’s journey is by no means over; he has pulmonary hypertension and respiratory problems and has endless hospital appointments ahead of him. For now, however, I am grateful to be able to end the year with this critical chapter of his life behind us.
Compiled by Ian Chow through stitching together some images and videos from my public posts regarding Baby Noah.
The doctors are aiming for a discharge date of Monday 17 December; he still has a couple of hurdles to overcome before then, but I’m hopeful that at 7 months, he will get to leave the hospital at long last.