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, January 11, 2011

18 weeks

I've been thinking a lot about Lily the last couple of weeks. I was 18 weeks pregnant with her when we learned the devastating news of her condition. I am 18 weeks pregnant with her sister now. It feels like a major emotional milestone for me to be at this point. Sometimes I perceive that others compare Lily's death to an early pregnancy miscarriage. I don't think of it that way at all. Not to minimize a miscarriage because I am certain that it is equally as devastating to lose a baby earlier in the pregnancy, but I didn't lose an embryo or just a fetus. I lost my daughter.


If you could see me now, you couldn't deny that I am growing a life in my womb. My pregnant belly is quite obvious. I can't disregard my daughter's existence merely because she has not been developing for 40 weeks. During these 18 weeks, she has grown limbs, fingers, toes, ears, eyes, a mouth, a nose, a brain, a heart, a stomach, kidneys, and the many other parts that make her human. She is here now, and I am remembering my feelings of guilt following that very memorable doctor's appointment during my pregnany with Lily. This time, I am reminding myself how fortunate I am to have had the last 18 weeks with my daughter. This time, I am embracing each day and each week as it comes, and feeling an overwhelming sense of gratitude.


I still wonder what things would have been like had Lily been a healthy baby girl. Obviously, I will never have the opportunity to have the answer to that, but I do know how my life has been blessed and enriched as a result of her 19 weeks of life, and this week, during my 18th week of pregnancy, I'm thinking of her a lot.

2 comments:

  1. praying for continued health for your new little one! what a gift gratitude is! thanks for sharing, I know you miss little lily!

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  2. I hope and pray and believe that you know what it is like to have Lily as a healthy baby. I can't imagine how because my mind gets all tangled up with time and distance----but I think you will have that opportunity somehow, someway. (How is that for a not-clearly articulated statement of belief in an afterlife?) Karen

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