Hi Lisa ... I am the father of 17 year old who was born with CMV.  Like you, I have never heard of it.  His symptoms would be classified as severe but he has shown through many events that he is tough as nails.

I am near the end of writing a book about the first 5 years of his life, not so much focused on CMV but on the journey, which was very tough those first few years.

Reading some of your excerpts, I know that we have a lot in common.  We should share our experiences sometime.

Take care.

-Mike