Hi Genine,

Believe me when I say that most parents have been where you are and felt the same things. I cried for a  long time. I felt guilty for a long time thinking that maybe it was something I did or didn’t do.

Most of the parents on this board are living proof that it get easier and much better for you and your family. I have a 15month old son who is a SVCAH. My son doesn’t waste salt. He was diagnosed through  newborn screening. He has never had a crisis so I can only imagine what you must have gone through almost loosing him. I would say to you that, with time, it will get easier to accept and deal with it. It has almost become part of our normal lives.

We still travel, still go out to games baseball and soccer (I have two older non cah sons). I also live in TX where it is hot, hot , hot!!!

I would say that you definitely educate yourself as much as you feel is necessary to make you comfortable with how to care for your son. Then, live your life with what you know and it will be fine. Your son is just as normal as any other kid he just has a little extra to be careful of. It may be oversimplifying it too much for you know but give it time.  Being a single parent and dealing with a new, rare diagnosis and having lost another child already means that you are a very strong and will continue to do so.

We are here if you need help. You can also email me.

Keep the faith that it will get better,

Sandra