19 years ago, my daughter was diagnosed with complex congenital heart disease (among other things). I was 20 years old. I had been married just over a year and lived in what seemed like a god-forsaken place at the end of the world. It was a tiny town called Del Rio, Texas that was home to Laughlin Air Force Base. And really - it was just the end of Texas if you went much further west you would be in Mexico. But for my purposes it could have been the south pole.
Over the years a lot of folk have said things like "I don't know how you do it" or "I don't know how I would handle your situation" and some have said "You should write it down". So I decided to write it down. In the early years, I kept a journal - so I'll be referring to that from time to time - but most of this will be from memory.
Unlike most blogs - I actually plan on answering questions from readers. So send in your questions if you have them. I'm not a medical professional (and I don't play one on TV) but I can tell you that experience is the best teacher in the world.
Please remember that some of these memories are painful - and not just for me. But be assured - if we got thru 19 years and managed to raise a pretty amazing young woman - you can too.