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, October 23, 2010

Letter to my Lily

My little Lily bug,

I began fantasizing about having you in our lives beginning in February, nine long months ago. My dearest Lily, we know now that God had a different plan for you. He chose to bless you by welcoming you into His kingdom immediately. He blessed us by allowing us to see you and hold you much sooner than we thought was possible.

I think that you know how much Mommy and Daddy miss you and think about you. I think you know how much I wish you could be here to be with us, but I want you to know that we will see you again. When our Father decides that it is the right time for us to meet again, we will run to you with open arms. Until that day comes, we have decided to think about all of the positive things that remind us of you to keep your memory alive in our hearts.

There is a very special spot at the park where Daddy and I sat one night before you were born. We went there to spend time with you and with each other without distractions. We talked a lot and cried some too. Our hearts were heavy with pain and sorrow. I like to think of this as "our spot" because it is one of the last places we got to take you. Maybe you remember that night too. I have visited that spot a couple of times in the last few months just to feel closer to you. We actually took your brother there not too long ago. Of course he doesn't know that it is your special spot (we'll keep that our secret), but he seemed to enjoy it there too.

We also went to the beach one day during your last week in my belly. We went with Aunt Tracy and Gran. I'm so glad you got to have one last relaxing day listening to the sound of the waves. The beach always makes me feel calm and at peace. I was hoping you might feel some sense of peace while we were there too.

Even though our last days together were not what I want you to remember about me, I know that you are aware of how far I've come since you left my arms. I've talked a lot about you. I love to tell others about you and what you have done for us. Your life really has given me strength, faith and hope.

Daddy and I have thought of lots of ways for us to remember you and honor you because you are so special to us and we love to think about you. You were still in Mommy's belly when we found our new house, and we spent lots of time walking around the yard because we loved it so much! Daddy planted a couple of trees for you, and he has plans to make a garden at home just for you. He's already cleared the space, and next spring, close to the time that we saw you for the first time, he will fill that space with the most beautiful flowers and plants we can find. I love that we can use our yard to remember you because I will always remember that you were with us when we fell in love with it initially.

Even though we have these experiences that allow us to feel closer to you, we still miss your presence terribly. I have been feeling that more and more recently since this is the time that you would have been home with us. We hoped and prayed that you would be in our arms and with our family right now. We looked forward to having you with us for Thanksgiving and Christmas this year. We will miss you so very much. I have a million reasons to think about you throughout the year, no matter what the holiday or month or occasion. Lily, you are so special to me, and always will be.

Sweetheart, you are in my heart everyday, and the physcial distance between us doesn't make me think about you or love you any less. In fact, I can't imagine how I would have loved you any more than I do now. I remind myself everyday how blessed I am to be your mother and to have had the time with you that I did. I will always remember that, Lily. You will always be my little girl.

I love and miss you lots baby girl,

Mommy

Tuesday, October 12, 2010

Remembrance Day

It's the milestone I've been dreading the most. The month of my due date. I would have been 38 weeks pregnant this week, and anxiously anticipating my baby girl's arrival. I recently learned that October also happens to be National Pregnancy and Infant Loss Awareness month. October 15, to be exact, is "Infant Loss Remembrance Day", the day set aside to specifically remember those infants who did not have the opportunity to experience life. I came across this video and wanted to share it in memory of all infants whose lives were too short. Will you join me this Friday by lighting a candle at 7:00 pm in memory of my Lily?

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.