Tuesday, December 2, 2008

Brushing off the information

Sometimes I wonder if my curiosity for the unknown feeds my nightmares of reality. I am a part of a board that I have mentioned that sends and receives many conversations regarding microcephaly. Some of the messages that come through send chills down my spine, but create a hands on education. On the other hand it only makes me want to learn more, and to find a way to help those afflicted with this issue. A mother tonight said her pregnancy went fine until her daughter was diagnosed with Ventriculomegaly (Jude's issue originally and what started all this). She mentioned she hated her diagnosing specialist so she found another specialist who told her all was fine and not to worry. The mother then said that whenever her daughter was born she looked perfect until they noticed she was not tracking objects with her eyes (which Jude does) so she consulted a specialist. It seems she was diagnosed with micro, and her diagnosis list has grown from there. She made reference to the fact that her eating is the "only normal milestone they have had". That makes me both breath a sigh of relief, cringe in terror, and harbor sympathy for those parents. She mentioned that her daughter had an MRI that showed 2 places on her daughters brain that showed CSF (cerebral spinal fluid) that took the place of damaged brain tissue from an in utero stroke. We already know that Jude has 1 place in his brain that the in utero MRI showed that the CSF filled in due to his in utero stroke. So I am always looking for issues that he may have, and here is someone not looking that has an issue. It amazes me and leaves me in awe. Is it better that I know and I have a fair warning or is it worse? You don't love your child any less. You don't offer them any less. She loves her child with all her heart, and I love mine too. So who knows the answer.
On another note (100% off the subject) I was thinking about Christmas and all the "stuff" we purchase and exchange. I have opted to get Salvation Army angels for a few people I know in lieu of a gift. When my grandmother was ill I had to disassemble her material possessions which was horrifying and eye opening. A normal paper towel holder, silverware, and other possessions she had to have when she was healthy become someone elses "responsibility" when she was sick. So are all these material things we want necessary? So no matter whether we are "green", "professional", or "whatever" we have a way of being able to accumulate to our surroundings. Whether we want to be "hippie", or keeping up with the Jones'es we still conform. I guess we don't have to have them, but ..... it's nice to have them. Point is I guess we just have be ourselves, and end up leaving things that are special to us to other people special in our hearts. Because even though I sorted through my grandmothers stuff for hours a few of her items ... like the Kleenex box with hot pink hair I knew she had to have truly made me smile

Have a good night!

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