11. I am sad.

Our kids.  Three unique individuals, all fun, dynamic beings in their own way.  So many dreams for them and with them.  How do we tell them that we may or may not have passed on this insidious gene to them? How do we not worry them, but encourage them to be proactive and make good healthy choices? (See how I worked that in there, kids?) How do we deal with the feelings of guilt that we may have unknowingly caused them pain? How do we not worry about the future while we focus on his health care needs?

Our oldest, in medical school, didn’t ask much and needed to process and question it all on her own time.  She needed to seek resources and talk to colleagues she admired to get knowledge about it.  Our middle?  Perhaps the most Midwestern of us all, doesn’t want to talk about it, learn about it or deal with it until he can wrap his brain around it.  He wants to ignore and be angry.  Deflect and move on.  Yell at us the loudest, even though we are not Italian.  The youngest?  Probably the most tender hearted of them all, is concerned for her dad and will worry quietly about her siblings and I.  She will internalize and has the most health issues of my kids.  

Some will question why we got genetic testing but I question why in the hell it’s not more readily available? We spent more than two years trying to find answers and wasted time and money not treating this disease.  We could have been doing so many things with preventative care but are now behind. 

And now we wait. And I watch and worry.