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, October 6, 2010

4 Months

4 months ago, October seemed like a lifetime away, yet here we are wearing sweaters and picking pumpkins already. I was sort of dreading the fall this year, and trying to hold on to the idea of summer as long as possible. Summer is the season that I will associate with Lily, and I hate to leave it behind just as I hated to leave her behind when I left the hospital that day in June.

However, with fall upon us, I am pleased to say that this new season has brought some unexpected positive experiences for me. Duran and I went to Annapolis last week and we had the opportunity to meet an amazing couple who have faced a journey similar to ours. They seemed to understand and relate to our pain and our grief. While it was an emotionally draining afternoon and evening for us, I felt refreshed the next day. I felt like a weight had been lifted off my shoulders. I appreciated the opportunity to talk about Lily to someone who may actually "get it". This experience has made me even more excited about the support group here. My hope is that this group will provide that same opportunity for others who need validation, support, and understanding.

In the last 4 months, we have raised $665.00 for the Trisomy 18 Foundation! I feel so incredibly blessed and honored to have such wonderful friends and family! Each donation has been incredibly heart warming. We appreciate every one of you who have given in Lily's memory. If you are interested in making a donation, please visit http://www.trisomy18.org/goto/LilyGraceHolder. The potential benefits of making a donation are endless. This foundation has offered us education, answers, support, and most importantly, hope.

In the last month, I also began two different bible studies. This is a huge committment, and I was not initially planning to do both, but it has worked out this way, and I have to say that these experiences have already brought me tremendous healing. Speding time doing something meaningful and uplifting has provided me with the comfort and understanding that I need.

I will move forward this month eagerly awaiting the arrival of the newborns who were growing and developing while my Lily was growing in my womb. Certainly, the upcoming births that I have been trying to emotionally prepare for will remind me of what could have been for my baby girl. My nephew, who happens to be due on the exact day that Lily was due to arrive, will be a fabulous reminder to me of the life that I also created. His existence will make it easy for me to always remember my angel, and I can't wait to meet him!

I do believe that my little girl has been watching over me and our whole family, and she wants us all to be at peace and to be happy. I don't want her to know me as a greiving mother. I want her to know me as the person that I long to be- an enthusiastic, energetic, compassionate, positive, giving, caring mother, wife, daughter, sister, and friend. I want her to see me overflowing with joy and passion during my time in this world. I know all too well now that our time in this world can easily be cut short, and I hope to make the most out of mine. Lily probably knows better than I do what is in store for me, and while I am eagerly waiting to see what is next, I believe she is looking down on me smiling because she already knows.

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