Home » Colleen Lightbody: A Journey of a Worrier to a Warrior at TEDxHyderabad (Transcript)

Colleen Lightbody: A Journey of a Worrier to a Warrior at TEDxHyderabad (Transcript)

Five years before, my son Gabriel was born and I was lucky enough to be present at both of my children’s birth. And why I say lucky enough is because my children are adopted. So it was an incredible privilege to be invited to see them born, and I don’t know how you ladies do it, because it’s a tough thing.

The social worker came to me just before Gabriel was born. This is protocol and she said to me, “Colleen, if there’s something wrong with this child, are you still going to adopt him?”

And I said, “Definitely not”.

You see I had a beloved brother who I love more than anything on earth. And when he became an adult, in early adulthood my brother was diagnosed with bipolar one disorder, a really extreme version of it. And we have been many years going through hospitalizations.

At one stage my brother went missing for a period of time in Okavango swamps in the African [Botswana] where we believed he’d died. And eventually my brother did die, a most traumatic day. And I didn’t want my daughter to have to go through the same pain and suffering that I’d been through with the sibling. So I said, ‘No, I would not take the child’.

So Gabriel was born and the pediatrician took this little creature to the side and checked him out and came back to me and said, ‘Look, I’m really sorry to tell you this but the child has got congenital hip displacement’.

Now congenital hip displacement — and he had in both hips quite badly — is where the little hip forms outside of the socket so the socket does not form properly and it requires quite a bit of intervention to correct.

So the social worker came to me and said, ‘Colleen, I guess this means that you’re not going to take the baby’. And I said, ‘No, quite on the contrary, I can manage this. It’s a physical disability’. So we went through a couple of years, it was fairly tough and this is the time when I made a choice.

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Gabriel at first was put into something called a Pavlik Harness which is a little brace — the hip sockets in place, we used to call him little chicken, because he looked like a little chicken. He was not able to move much and we weren’t able to take it off to bathroom at all. Unfortunately this didn’t work.

We then went through some extensive surgery. Gabriel was put in a full body plaster cast from his shoulders to his feet. And again his little hips kept in place that he couldn’t move and one of my most enduring memories of this time was how Gabriel and I used to sleep. He used to sleep lying on top of my body in an effort for myself to give him some kind of comfort. He’s had a few other operations and possibly will still have many more.

But after a couple of years everything had settled down and once the plaster casts came off, Gabriel started talking and he has not stopped talking since.

Firstly, he is incredibly social, he loves socializing and he loves people, terribly friendly. And secondly, he is incredibly articulate. Gabriel has a wonderful command of the English language and he speaks like a little genius. I kind of figured that he’d become a doctor.

Then came the courage part. 5 years later, Gabriel was about to enter formal schooling and his teacher said to me, ‘Colleen, I’m not sure why but I just think you should take him for some tests, just to check that he’s ready for school’. So I said 10 years ago, almost to this very day in front of a panel of professors at the Johannesburg Children’s Hospital where I was told that my son was permanently and irrevocably brain-damaged. Gabriel will maybe even reach the cognitive capacity of a ten-year-old. However he has this amazing talent which is the ability with language.

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Gabriel suffers from something called fetal alcohol syndrome. His biological mother had been drinking in his pregnancy. Alcohol has an irrevocably damaging effect on the baby central nervous system and most tragically on the brain. Alcohol literally shrinks baby’s brains. In South Africa we have the highest incidence of fetal alcohol syndrome of anywhere in the world.

Worldwide the statistics are: about 0.1% to 0.3% of babies are affected by alcohol which I find horrifying. In South Africa, it is closer to 14% and we have the fewest resources available to us.

So I cried all the way home. One of the things I do in my work is I teach people that emotions are useful and wonderful things. Unfortunately we’ve created a society where we don’t allow people to express their emotions.

In fact, from a neuroscience perspective, if you remove or damage the emotional part of your brain, a person is able to function completely normally. However they become pathologically indecisive, they become unable to decide whether they’re going to go to work in the morning or what breakfast cereal to eat. So emotions are useful. It’s what you do with your emotions that count.

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