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.