I don't really know where to start with this post, which is quite appropriate really, as I don't know where to start with tackling t...

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I don't really know where to start with this post, which is quite appropriate really, as I don't know where to start with tackling the issues in this post either.

How do you even begin to tell your child that they have a rare chromosome disorder that is going to affect the rest of their life?  

That they are probably always going to find certain things difficult. 

That there will always be mean people out there that make them feel bad for being 'different', but that they must try to rise above it and be the bigger person.

How do you explain to your child that when they are an adult, and are ready to have children of their own, they have a 50% chance of passing this condition onto their own children?  And if they do pass the condition on then their children may have it even worse than they do.  

How do you tell them that the symptoms vary so much that there is no way of telling just how much (or how little) their children could be affected?  





How do you explain to your child that they could develop more problems as they grow older, such as epilepsy and problems with their heart, but no one really knows for sure?

 It's difficult enough to discuss these things with any child, or even an adult, so how on earth do you explain it to a child that has difficulty understanding things? 

A child who struggles to cope with his emotions, suffers with anxiety, and can't express himself without showing frustration and anger?

How do I make him see that being different isn't a bad thing?

How do I reassure him and make him see himself for the beautiful, loving and caring boy that he is when he already worries so much about what other people think of him?




It breaks my heart, but I know that it is time.  

Time to try and explain it all to him.  

He is already starting to notice that he is 'different' and I need him to know that it is NOT a bad thing.  

That he is still capable of achieving his dreams and that he IS going to be fine.

I just don't know where to start!


Any help and advice would be very much appreciated.

Love (an anxious and emotional) Missy x