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, November 17, 2010

STAR group

Tonight will be the first STAR group meeting! I couldn't be happier that the hospital has been able to accomodate the start of this group again after taking a little break from it. I am hopeful that those who choose to come tonight will feel supported and understood. And, of course, I am looking forward to a good excuse to talk about my little angel. Naturally, I'll post an update to debrief about my experience a little later.

Monday, November 15, 2010

5 Months

This has been a challenging month for me to get through, and now that my due date has finally passed, the emptiness and uncomfortable anticipation (for lack of a better word) that I was hoping to overcome, has not gone away. I kept telling myself that if I could get over this hurdle, I may feel some sense of relief or even accomplishment that I've made it. Maybe I feel like that just a little, but "relief" is definitely not the word I would use to describe this feeling. It's consistent emptiness, sorrow and even isolation at times. I really kind of thought that might go away, and it's kind of frustrating that it hasn't. In fact that is why this post took a little longer than I would have liked. I kept procrastinating writing another depressing post.

This process can be very isolating. I mean, who really wants to hear about my grief over and over again, unless they are choosing to read this blog, of course. Here, I feel safe to release any and all of my not so pleasant feelings without worrying about judgement. If you are choosing to read this, then you should be well aware that I won't sugar coat it. I try to express my true feelings, as uncomfortable as some of them are, in an effort to get it out and leave it here. It allows me to go about my life without dwelling too much on the negative stuff.

Outside of this blog, however, I'm very sensitive to thinking that other people may expect that I've moved on, and as long as no one mentions the fact that Lily would have been here by now, I'm okay. But, in reality, all it takes is for someone to acknowledge that my baby is not here, and I momentarily melt into a puddle of sadness. I guess that is to be expected. At least, I'll tell myself that for now.

As I move forward this month though, since it is November, I will try to express my thankfulness and gratitude for the life that was created. Although very short, Lily's life was full of meaning and purpose, and I firmly believe, a necessary part of my life. This month, hopefully, will allow for a little more positivity as I focus on these thoughts.