Tuesday, August 23, 2011


I feel like I am in high school again cramming for a test.  I want to be as prepared as possible for the meeting on Friday but am honestly feeling totally overwhelmed.  There is so much to learn about this disorder.  I know that I have time but it just seems like I will never know all there is to know.  I posted a message on the Living with Trisomy 13 facebook page and the responses were amazing.  All of the women on there are so helpful but that is also what made me realize that there is much to learn.  We has parents unfortunately not only have to educate ourselves but it seems that often times we also have to educate the doctors as well.  The medical field is not always supportive of full interventions for these children.  Many doctors will say that she has a "lethal abnormality" and treatment is futile.  I am praying that our doctors will be supportive of any treatment choice we choose for Quinn, whatever that may be. 
Today I was lucky enough to talk with a mother in California with an 11 year old daughter with full Trisomy 13.  She has so much knowledge and though it was all a bit overwhelming it was also a tremendous help.  Now my head is swimming and my eyes hurt.  I am going to put my highlighter to rest and go to bed early tonight. 


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