Letter To A Student In China

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.

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