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


Tuesday, March 15, 2011

Timeline

Have you noticed the Lilypie timeline on the right side of the screen for my blog? It documents how long it's been since our baby went to heaven. I'm really starting to resent that timeline. I remember when I was putting this blog together, and I added this feature, the image of the baby was not even up to the number 1 yet, and I wondered what things would feel like as she progressively moved forward getting further and further away from the 1. I thought things would be easier. People say that times heals all wounds, and that grief gets easier with time. In some ways, I can see the rationale behind these statements, but this is not something I would ever choose to say to someone experiencing grief.

I've caught myself a couple of times recently checking out this visual symbol of my grief timeline, and I find myself feeling angry because I don't feel a sense of accomplishment that I am further away from the 1. I remember when this angel was in the midst of the image of the tree, and I thought that was the eye of the storm for me. She has since moved pretty far away from that tree, and there is nothing left, nowhere for her to go. What will happen when the tree is completely off of the screen? It's like the storm is that much further behind me, but I don't really want it to be that far behind. I actually wish I could reverse time. I would intentionally choose to re-experience all of my feelings of grief and sorrow to have those hours with my baby in the hospital again. I would go through all of the agony again: the harsh reality of an imperfect sonogram, the appointments with the doctors, the discussions with the specialists, the dreaded walk into the hospital, the labor and delivery, the surgery after the delivery, the drive to the funeral home to pick up my daughter's ashes by myself, and the subsequent drive home with her in my lap (which really could be a post all by itself) because all of that was so closely related to the time I spent looking at her face and feeling her weight in my hands.

It's kind of strange how something so insignificant can cause such a profound emotional reaction, but looking at that silly baby angel on my timeline really just reminds me how long ago it was that I saw her face, and that feeling sometimes overrides the "benefits" of nine months of grief time under my belt. Every once in a while, something like this hits me so out of the blue that I never saw it coming and others around me would probably not understand. Maybe this is a just fleeting bout of negativity as this image struck me wrong today, but I do feel better after venting about it. I'll keep the timeline up for now, and re-evaluate how I feel about it again sometime in the next few months.

Monday, March 7, 2011

9 months

For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be. Psalm 139: 13-16.


I love this!! As much as I like to think about how these verses apply to our newest blessing still being formed in my womb, I like to think about this even more so with Lily. Given the circumstances, I could see how someone else in our situation might doubt these words, but I have no doubt that Lily was, quite literally, fearfully and wonderfully made. God had complete control over her body and her life. Her imperfections are what made her perfect. Her unformed, even deformed body, though difficult for others to see were easily seen by Him. To Him, and me, she was beautiful.