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


Wednesday, April 6, 2011

10 months and a new perspective

Wow- 10 months. I'm not even sure where to begin this time. I've had lots of random thoughts recently that I will attempt to express in some organized fashion, but I can't promise that this entry will even make much sense.
First, I want to address the fundraising ideas that were discussed several months ago. Just to clarify, I am still very interested in coordinating an event to raise funds for the Trisomy 18 foundation. This interest and passion has not gone away; however, my originial intention to host something on or around Lily's birthday will not happen this year because our baby is due to arrive about a week later, and, even I realized that this is too much to handle this year. I do not want to let this dream go, though, so I will continue to brainstorm ways to make this happen in the future. I still appreciate every one of you who has offered ideas and suggestions, and volunteered to help. I haven't forgotten you, and I'm sure that I will re-enlist your help when the time comes. For this year, though, we are hoping acknowledge Lily's birthday and remember her in a smaller, more intimate way. Many of you know that we were never able to put together a memorial service for her, and that is something that we have regrets about. We were hoping that hosting a fundraiser in her honor would allow us to have a positive memorial for her, and because it won't happen this year, I already have mommy guilt about Lily's baby sister overshadowing her. I have made it a point to be clear on a number of occasions that another pregnancy and another child will not replace my experience with Lily. I have reminded myself repeatedly that this baby certainly will not ease the pain of Lily's death. I think that I've been so rigid about this way of thinking, though, that I have failed to see other perspectives.
I recently had a conversation with an aquaintance who didn't realize that I lost my Lily last summer. After seeing my pregnant belly, she asked "Oh, is this your 3rd?". Now, let me deviate momentarily to discuss my thoughts on the many variations of this question. I know for certain that the inevitable question of "How many children do you have?" is one of the most dreaded questions any parent who has lost a child can face. We all struggle at times with how best to answer this. Do I answer with the number of living children that I have, or do I go on to explain that I have one child in heaven. Sharing this information will no doubt alter the rest of the conversation and the way the other person responds to you, even the way they will look at you. I am always very mindful to not make others feel uncomfortable, however, by not acknowledging my daughter, it is as if she was not real or not important enough to talk about, and that is not acceptable to me. I'm not sure that others realize the impact that this seemingly simple question can have on people. The internal struggle, debate, and dialogue that happens in my mind before I let out an answer seems to go on for minutes, not the second that it probably takes for me to answer.
So, I responded to her question truthfully, and she offered me the most heart felt and genuine reaction I think I have ever experienced. She didn't look down or look away or apologize for asking. (A word of advice for anyone else in this situation- please don't apologize for asking the question. Most of us in this situation love the opportunity to talk about each of our children, living or not, but we just don't want to make you uncomfortable.) She immediately reached over and placed her hand on mine, and seemed interested in hearing about my daughter. She referred to her as my angel. The conversation moved back to my pregnancy and the feelings that I have had throughout the pregnancy, and when she learned that I am having another girl, she made the comment that Lily is coming back to me. It took me a second to process this idea. I smiled and nodded, but have since thought about this a lot. I've been so careful to see this baby as a completely separate individual, and I've honestly been somewhat struggling with the balance of processing my ongoing feelings about our experience with Lily and trying to not let fear have a negative impact on my pregnancy. I never once considered the idea that Lily is "coming back" to me. I've been so worried about leaving Lily behind and the fact that this baby's arrival is preventing me from celebrating Lily's life the way we intended to. I still don't really know how I feel about the idea that she is coming back to me, but it has brought me a new perspective that makes me feel a little more peace and joy.