Lily is alive because of her smile. Her beautiful, radiant smile, so full of joy and love in spite of the battles she's been through. That pure joy to my heart that she gave to me as I walked out of her PICU room to attend the meeting no parent ever wants to attend. That smile gave me the courage to tell her team, in the face of stark, cold facts, that yes, we would fight for Lily. Because Lily smiled. Lily was happy. She had been through some horrible battles in her (then) thirteen months, but she was still fighting. She was loved and she was happy. And while she fought, we would fight too.
The meeting was efficient, mostly a formality for the team to make sure that mom and dad were facing the reality of the situation. We made plans to try a few more things (while not being fully convinced the outcome would change) and plans to work toward getting Lily home because we wanted what time we had to be meaningful. I walked out of that meeting, kissed my baby girl, and then called the child life specialist to help me learn how to prepare Lorelei for what lay ahead.
17 June 2011 was easily the worst day of my life. But as bad as that day was... 20 June 2011 was one of the best. The infection we'd been fighting for over a month, seeded in blood clots Lily shouldn't have had... it was gone. And it stayed gone. Nothing really happened over the weekend that would have changed it. It was just a miracle and one of the best ones I've been privileged to experience at that.
Lily went home a mere six weeks later and has been home ever since with only one hiccup. She needed a short course of IV antibiotics and then was home again. She has thrived. Lily has met family and friends, made more people than I can count fall in love with her, and has played more with her sister than I could even count. Lily has learned a few signs and was recently caught signing "I love you" to Lorelei with the most adoring look in her eyes. And tomorrow... Lily reaches another milestone. Her second birthday. A day that eleven months ago seemed so impossible and yet, here she is.
A few more moments like this, and maybe, just maybe, I can exhale. In the meantime, Lily smiles at me and each day I'm reminded why this fight is so worth it. And tomorrow... we're going to party like it's her birthday.