I was up late last night watching episodes of Boston Med online. (A little background if you have not seen it, it’s a REAL life show following families, Dr’s, nurses at 3 hospitals in Boston including Boston Children’s). There was one episode were a couple found out they were expecting a baby with Hyperplastic Left Heart syndrome (very similar to Lilli) and it was explained COMPLETELY differently to them by their cardiologist! He told them that even with the three surgeries most babies will not make it and that it is an extremely difficult process. They were so much more realistic about the reality of this horrible diagnosis. The hard part is I completely felt for the mom when her little boy was born… she said she loved him so much but was so scared to “bond” with him! I was crying my eyes out.
How do I sit here and love my sweet little Lilli more than ANYTHING in the world and have this horrible pain in the back of my mind that she is completely unhealthy and could die at any moment! She is so sweet, happy, moving around like crazy, talking and learning new things everyday you would just never know what is going on inside of her. One second I feel like she is “normal” and the next I have a horrible pit in my stomach that any moment now “it” could happen. It’s the worst feeling in the world and for the most part I can suppress it… but moments like now I just want to scream at the top of my lungs and cry my eyes out!!!!
It’s just not fair! Why does my amazing, adorable, sweet, strong little girl have to go through all of this? I hate it more than I could EVER explain.
