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


Saturday, July 24, 2010

Lily

It is with such a heavy heart that I write this blog entry. I've been wanting to write about Lily's name, and I think this is the best time to do it.

Lily was a name that we have liked ever since we started talking about having children, and really, even before that. When I was a little girl, I had a stuffed animal that I had named Lily- a soft, comfy white teddy bear. When I was pregnant with Owen, if he had been a girl, Lily was the name we had chosen. When we began talking about names this time around, I realized that Lily was becoming a popular name.

After Owen was born, a couple who attended our church named their baby girl Lily. She was diagnosed with spina bifida, and I was amazed at her family's strength and faith as they faced the reality of having a baby with a medical condition and probable physical limitations. I had the privilege of being a part of their church family, and hearing them talk about their baby girl, and their hopes and dreams for her. I remember wondering if we would ever have a Lily of our own someday.

More recently, one of my co-workers, who was pregnant and due four months before me, planned to name her baby Lilyanna. I remember telling her how much I had always liked that name.

When we found out we were having a girl, we took that name off of our list because we wanted to select a name that could be unique to our baby. We came up with two other names that we both really liked. When we learned about Lily's diagnosis, everything seemed to change, even her name. The other names that we chose reminded me of pony tails, hair bows, lipgloss, and a little girl who would melt your heart with her smile. When we learned that we would never have the opportunity to experience life with our daughter, we knew immediately that she was the Lily that has always been in my life and in our hearts. She was unique and special. Naming her Lily didn't make her any less unique than anyone else. We no longer had to worry about her sharing her name with other little girls in her class, or anywhere else she may be. It was okay for her to share her name with other Lilys in heaven.....which brings me to the hardest part of this entry.

Earlier this week, my co-worker's baby girl, Lilyanna, passed away. Her Lily was just three weeks old, and was beautiful and healthy. My heart goes out to her, and I think about how much harder her loss must be compared to mine.

I was given a diagnosis (actually 2), and lots of information and articles about Lily's conditions. I have had the support of the medical professionals who diagnosed and delivered her. We knew that our Lily was not going to live before she ever left my body. We were educated about her diagnosis and her prognosis. That certainly didn't make it easy, but we began grieving before she was even gone. It was a terminal illness that allowed us to begin preparing for the loss even before it happened.

Lilyanna's family may not have the opportunity to get these kind of answers that are so helpful in understanding and healing. She was delievered at full-term with no known medical problems. She was joyfully welcomed into the world by her family and friends, who never suspected that this would happen. This is a kind of loss that I cannot imagine. I cannot pretend to know what her family is feeling. I only know how I feel without my Lily, and it is a feeling that I would not wish for anyone to have in common with me.

I'd like to think that my Lily is with Lilyanna, and that they are finding peace and comfort with each other. Obviously we would prefer for them to not have met this way, but I've realized that it's not such a bad thing for Lily to share her name with one of her newest friends.

1 comment:

  1. I've wondered about the names of these two precious little ladies. Thanks for explaining the story.

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