Welcome to my journey as a parent of a child with Cornelia De Lange Syndrome.
It's lonely.
It's difficult.
It's strange.
It means to become an outcast along with your child as they grow older and bigger and their difference to others becomes more and more noticeable.
I find myself shrinking away from face to face contact with others simply so I don't have to face their pity, or their disgust, or sometimes even their fear of catching my misfortune.
My girl is now 15, so I have been through a heck of a lot of adversity over the years - medical, social, psychological, physical, educational.......
I'm reaching out to others in an effort to enter dialogue with others who are going through similar episodes in life to me. Please feel free to add anything you please even if your child is simply 'different' rather than suffering from this syndrome. We need to support each other!
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