Thursday, 9 August 2012

How to talk to people about Trisomy 18

This can be very difficult especially with people you just meet or who see Lachlan and want to know more. At this point if Lachlan is in a pram or in the shopping trolley he looks like a 12 month old baby a little small perhaps but they can't see the hypotonia (low muscle tone) and some people he interacts with and smiles at.
 I have handled it in varying different ways. Sometimes I am very vague and just say he has under developed lungs and therefore that's the need for the oxygen.
Most of the time I do mention Trisomy 18. It hard not to be proud of him and tell his story but if you go there you have to be prepared for all the questions that follow. "Will he grow out of it" is probably the one I hear most because most people are kind and want to know that there is some light ahead for you and him. Sometimes I do give too much information and talk about life span. Most people do see that if I tell them the average life span is a couple of weeks and Lachlan is two he is a very unique individual but they assume that he has beaten the odds which he has to an extent but he still wont have a normal lifespan. I told someone the other day that He probably wouldn't live to forty and that was ok because at that point I'll be in my eighties and I don't want to put him in a home. But I was being kind because in the back of my mind I know it is unlikely he will live anywhere close to that time. It is impossible for me to imagine life without him now so I am not going there and at this point I have decided I like living in denial.

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