Yesterday I attended the VCFS conference at Childrens Hospital Westmead and one of the topics that came up was “When is it the right time to tell your child they have VCFS?” I really don’t think there is a right or wrong answer to this and really I am only an expert in my own experience and that of my child.
So to tackle this topic I’ll use the authority of my own experience and perhaps it may help some one who reads this come to terms with their own decision on what to do.
Finding out my Son had VCFS initially was quite a shock but as I was able to digest the diagnosis I found my self embracing it as, what else could I do? I also believe that he is my precious gift from God and my son is no mistake at all.
My/our approach so far is we tell him he has VCFS but we say it very matter of factually. At the moment he wouldn’t have a clue what it all means but he just accepts it like the moon is round. I’m sure there will come a time when he will see himself as different and talking about VCFS will be important.
I hope by always being open about VCFS that much of the stigma of it is taken out of what he has. At this stage I can’t say that his reaction will be good or bad but if I can lay a foundation of You have this but that’s OK then perhaps when the lights go on for him that he wont be so devastated by the reality.
We can only do our best and as I’ve said before I’m only the expert for what we do but I hope in a small way what I’ve written offers clarity for some.