Our daughter, Lily Grace, was born to heaven on June 6, 2010. She was diagnosed with alobar holoprosencephaly (HPE) and a rare arrangment of trisomy 18 (isochrome 18q). To learn more about our experience, you may want to start at the beginning. Read Lily's Story: from Beginning to End, which is one of the first blog entries on June 24, 2010.


He heals the brokenhearted and binds up their wounds. Psalm 147:3

Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. 2 Corinthians 4:16-18

He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield and rampart. Psalm 46:1


Thursday, July 29, 2010

Fear

Sometimes I feel like I'm living my life fearing the future, and barely getting through the present. I think about all of the uncomfortable things that have yet to happen, and I dread how I will ever survive them. I've been doing this ever since we found out that Lily was sick.When we found out about Lily's diagnosis, I feared having to share the news with our family and friends. I didn't want to answer the same questions over and over. The same questions whose answers I didn't completely understand at the time. I feared leaving my house because I didn't want to run into someone who didn't know that our baby was sick. I couldn't pretend that I was okay when I was already grieving the loss of a life that I created. I didn't want to hear strangers make comments to me about my baby bump because all I could think about was the fact that my baby was dying. No one expects to hear that when they ask when your baby is due or what you're having. I feared returning to work because I couldn't stand the thought of people talking to me about my pregnancy or my baby. I feared crying in my office by myself, or worse, in front of my clients who had come to me for help. How could I help someone else when I couldn't even help my own baby? I feared going back to church in those initial weeks following Lily's death because I knew I would break down, and I couln't bear the thought of strangers looking at me with pity, not knowing why I was so sad. I still sometimes fear going out because there seem to be pregnant women, infants, and the most adorable little girls everywhere, and they all make me think about Lily, and the life I wish she could have. I fear the end of the summer and the beginning of fall when I would have been reaching the end of my pregnancy. I fear my due date arriving. I even fear Christmas this year. As soon as we found out I was pregnant, we talked about the fact that last Christmas was the last one that Owen would have without a sibling to share the joy. I already fear Memorial Day weekend as I will probably always relate it to the time we learned that our baby would not live. Of course, I also think about June 6, which will always be the anniversary of Lily's death, the first and last time I ever saw my baby girl.I realize that I am preparing myself for the worst, and probably spending way too much time predicting what hasn't even happened yet. I know that I should be thinking more about today, and taking it one day at a time, but somehow I get through each day by dreading the things that haven't happened yet. Then, when the time comes, it actually doesn't seem that bad. I am surprised at how far I think I have come already.Going back to work wasn't as bad as I had predicted it might be. Going back to church was actually the best thing I could have done. Maybe October won't be that bad either. I will get to meet my new nephew, and that will be wonderful! I will keep myself busy in December, and we will somehow make Lily a part of our new holiday traditions. I'm hopeful that we will continue to look for ways to keep Lily's memory alive, and to offer something to the community and other families facing the loss of a precious life. This will keep me going day after day, and eventually, maybe, I won't have anything to fear.

2 comments:

  1. praying for more strength for y'all each day. writing helps, love the blog!xo

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  2. I have been thinking and thinking, trying to find something to say here. I finally remembered something that someone told me, "Fear is your body's way to say there is something important here." I have ideas about what that is but you will have better ideas. And, then you will do something about them. Thank you for sharing. Karen

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