Thinking, Thinking, Thinking

Too much thinking perhaps. Occasionally I spoil/torture myself by dipping into these deep philosophical conversions that happen within the confines of my own mind. I'm having one right now. Tonight's topic is: surprise, surprise...Ruby.

I just mentioned on facebook how I feel bombarded by a myriad of emotions lately. Raging from anger to eternal gratitude for my daughter. I hate that we lost the first 4 1/2 months of her life to heart failure. I hate that I can't feed my child in the way that my body and mind cries out for. I hate that she has not formed better relationships with my friends, due to her long hospital stay. And as I said on FB: I hate, hate, HATE that she will come to a moment in her life when she realizes she is "different." And let's be honest...not in the best way.

Now OF COURSE Ruby will be unique in a thousand wonderful, character-building-type ways, but she will also be different genetically. She will learn in her high school bio class (and most certainly from Dan and I before hand) that she is missing a piece of DNA. And despite our efforts to instill in her a sense that this in no way detracts from her humanity...I fear that she will feel it does. I also said on FB that this came to my attention when we were at the Science and Industry Museum. When we walked through their displays on Chromosomal Disorders I felt like they were pointing a sign at my child, who in my mind is perfect, and declaring her to be something other than this. I felt hurt and saddened.

I know this isn't the best attitude to take about this disorder, and although not a day goes by that I don't feel saddened by Ruby's situation...I rarely if ever have these feelings and concerns when I am in the moment playing with my daughter. Because you see, she is perfect. She is such a beautifully complex and loving girl. With so much humanity and, dare I say it, an eternally beautiful soul. So how do I help the rest of the world to see this? How can I help her to see herself as such, with the world telling her something different?