To Tell or Not to Tell

I was chatting with another parent to a child with VCFS online, and he asked me about who we've decided to share Ruby's diagnosis with. Well, clearly the whole internet world knows...but in our personal life we've been nearly as open. Now if a stranger approaches us and we begin talking, I must admit I'm far more likely to divulge the fact that Ruby has a heart condition. Why is that? I honestly don't know if I have an easy answer to that question.

Sometimes I think I share her "heart story" more readily because I am so proud of how far she's come on that journey. I want to let the world know of my baby's strength and will to live. I know things may change in the future and that she has fought only one battle in a what will be a very long war, but she won that battle and I am proud. I should add that if she does lose this war at a later time I will still be glad for her fight, and proud of her for knowing when to walk away :)

Other times I think I omit her diagnosis of VCFS because of the stigma attached to people with "that type" of disability. Our society still casts a downward eye to people with cognitive or psychological impairments and that is something that is very hard to overcome. My mother and I were talking after church one day about the fact that in spite of people's kindness to such individuals, that it is rare for non-disabled and disabled persons to develop genuine friendships with one another. Although we may say, "Hello, how are you?" Do we ever say, "Would you like to grab a cup of coffee this week?" Maybe this is something we should all work on...myself included.

Anyway, perhaps it is my knowledge of this type of treatment that keeps me from telling others of the fact that Ruby has VCFS. The funny thing about this is that Ruby may have no significant cognitive impairments! She may end up just like the rest of the us, skilled in some areas and well...not so much in others ;) But I don't want people to place her in this category before they come to know her. I would much rather they take note of her personality and treat her as any other child, than to lump her with a population that she may or may not share commonalities with.

So what to say about this? Should I tell everyone Ruby meets? Of course not! But I do think I will keep on explaining her condition to those that share an interest in her development and have taken the time to know my daughter as she is, without bias. I hope that as Ruby ages she will decide independently who she feels comfortable sharing her medical information with. And if she does share it, as I said to the parent I began this conversation with, I hope it becomes a mere descriptor and not a definition, "I am Ruby. I love music and reading. I have blond hair, VCFS, and think that cake is disgusting." ;)


Oh, and if Ruby ever asks me to when she gets older, I will gladly delete this blog to respect her privacy...so read up while you can! Ha!