Today has been difficult, maybe unbearable at times. I didn't think this day would be so hard actually, but just like everything else in this grief process you just cannot predict how you are going to feel on given days. There are things about Lila's short time with us that I have chosen to not know or try to block out, such as the time that she died. I don't know what time she died, Mike does, I have chosen to not know it ever. I don't want to ever see that time on a clock and think of it, that terrible moment. Yet today I know, because it was the whole day.
Two days before we had been told that Lila's mortality was not an issue. That the doctors were expecting her to live and we should prepare for about a 6 week stay in the NICU. Doctors do not know everything, they wanted the best for Lila, but they were wrong. Today was the day one year ago that we never saw coming. We had been with Lila all morning and then went to get lunch while she was looked over by the neurology team. When we got back they had us wait in the waiting room for a very long time, then brought us back into a small room. It was there that our world came crashing down. I don't need to go into all the details of what was said, we all know what happened. They basically said Lila would not survive much longer and there was not much left to be done for her and our whole world came crashing down.
Pieces of this day haunt me, torture me, confuse me. I still do not understand what really happened to her. Why her? Why us? She deserved better. She didn't deserve this fate. She should be here living her life as a busy one year old. Not this.
This picture was taken one year ago today and I love how she is touching her hands together. Lila is so amazing and beautiful.