Friday, September 9, 2016

For Lily

It's funny the things that change you. The things that you don't forget. The things that you carry in heart with you where ever you are. 

I met Lily about a week or so after she was born. I was a bit nervous to meet her as I knew that she was born with a list of medical ailments that weren't what I have ever encountered or seen. I didn't know what to expect. I didn't know if I would be taken aback by her physical condition or by the wires that I knew were going to surrounding her like an inescapable web. What I did know was that I loved my friends dearly and I wanted to be with them and support them in any way that I could. I also knew that somehow this little girl had captured my heart before she was even born. I cannot tell you why other than there was just something magical about her. I know that description seems so ridiculous, but I think that among those who had the honor of meeting her there would be others who agreed with this statement. She just had this way of drawing people to her...I have never experienced it before or since - this magnetic pull. 

Lily's mom was able to get special permission for Sarah to meet Lily in the NICU as well. 2014 was our hell year with Sarah and she happened to be admitted in the hospital as well for part of Lily's time spent in the NICU. Sarah was so excited to meet Lily. I don't know why, but she had an attachment to Lily ever since Lily's mom and dad found out that Lily would have an uphill battle to survive beyond pregnancy at their 20 week ultrasound. I don't know if Sarah became attached to Lily because Lily was the only other child that Sarah knew of that was facing an uncertain medical future in which doctors had no answers and no direction to offer as to why this was happening or what the certain outcome would be. I never took the time to ask Sarah where this attachment came from because it wasn't really important. All I know is that with regularity Sarah peppered me with questions about Lily and how she was doing and how her mom's doctor's appointments were going, etc...


How I could have ever been worried about my reaction upon seeing Lily for the first time I do not know, but hindsight is always 20/20. From the moment I first laid eyes upon Lily I can say quite certainty she was the most beautiful baby I have ever seen. She was the most perfect baby I have ever seen. Yes, she was surrounded by wires and tubes and machines. Yes, she had a list of medical hurdles to overcome that would eventually prove to be too much for her to sustain any semblance of living, but when I first laid eyes on her I didn't see any of that. I saw the sweetest baby - the most angelic baby - I have ever seen. She had the softest skin & the longest fingers. And she was hairy to boot! (Hairy babies are my favorite thing. I love when they have hair on their ears and back. I don't know why, but I just love it. )

Watching my friends go through the pain of having hope that their daughter could somehow survive and then watching as that hope was extinguished was one of the hardest things I have ever had to witness a friend go through. What do you say? How can you ever make things better? How can you help to carry their burden or lighten their load? How can you even begin to express the sorrow that you feel in your heart that they have to go through this? As a mother, I can only imagine the depth of hurt, anger, pain, fury, despair that they must have felt and in my imagining I know that I can only have capture a small percentage of what they actually went through. 

Lily died on September 10th, 2014. I got to meet her twice. And I am so thankful that I did. 

The day after her death her father, who is a beautiful and gifted writer, posted the most heart wrenching post regarding her death I have ever read in my life. I read his word with tears pouring down my face. I read them with blurry eyes and realized just how cruel death can be because death is not easy on the living and it is not easy on the dying either.  

After Lily's death I carried her around in my heart. I thought over time her impact on my life would fade, but I couldn't have been more wrong. I still think about Lily quite a bit during the course of the year. I think about her daily during the weeks of birth to her death. I usually smile when I think of Lily because her life was a gift not just to her mother, father, brother, and family, but to all of us who got to know her. Because of Lily I can truly say that I realize just how fragile life is. Because of Lily I hold my children tighter and love them more fiercely. Because of Lily I know that life is a gift. Between Sarah and Lily I know that life is not guaranteed. Yes, I knew those things before, but there was a catalyst that helped ignite a fire under me that allowed me to begin living what I knew. 

 I carry a part of Lily around with me in my heart where ever I go. I imagine that all of us do. There are some people who go through their entire lives and do not make a positive difference in as many people's lives as this little girl managed to do in a little over three weeks time. 

I wish for my friends that Lily was born without the hurdles that she faced. I wish for them that they never had to experience the pain of losing a child. I wish that there could have been a cure for all of her ailments. But to live in that place of wishful thinking without the ability to actually do something about it would be a disservice to life of this amazing young lady. This magnetic and magical young lady. 

Lily, where ever you are - thank you. Thank you for making me a better mother. Thank you for changing me. I will not take your life for granted. I will carry you with me for ever and always. 




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