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


Sunday, January 23, 2011

19 weeks and 3 days on a Sunday...again

Today, I am 19 weeks and 3 days pregnant. I was exactly 19 weeks and 3 days pregnant with Lily when she left the safety of my body and went to the glory of heaven. Last night, I kept thinking about that since I was in labor at the hospital at that point in my pregnancy with Lily. It would have been at 3:25 this morning that she was born, also on a Sunday. I woke up a few times throughout the night last night thinking about it. I've thought about it all day today. I've anticipated having these reminiscent thoughts on June 6, which will mark the one year anniversary of our baby's death. It has come as a surprise to me to have these feelings now, on a random cold day in January, but obviously this pregnancy has brought up a range of emotions that I experienced throughout my pregnancy with Lily.

I realized that our newest miracle is now older than Lily will ever be. I can no longer compare this pregnancy to my pregnancy with Lily because I stopped being pregnant at this point, so prematurely. I almost feel like I am leaving her behind. I've read many blogs of women who have gotten pregnant after the loss of a baby, and it seems that feelings of guilt are not that uncommon. I can't say that I feel guilty for being pregnant with this baby, but I do often wonder if this child would have ever been a part of our lives if Lily were here with us. It is a strange feeling. I want to love all of my children equally and unconditionally, and I believe that this child is a blessing and a miracle because Lily's life and death allowed her to be a part of our lives at this time.

I remember how unnatural it felt to be nearly 20 weeks pregnant with a swollen belly, walking into the hospital feeling as if I were facing my own death, then leaving not pregnant anymore. I sometimes wonder how I ever made it through that experience. I talked to myself trying to convince myself that I was strong enough and brave enough. I remember thinking that I wasn't emotionally prepared to be in labor that soon. I was only half way there. I can't imagine being in labor today because I should still have 20 weeks to prepare myself. In addition to the odd pregnancy dreams that are to be expected, I dream often about going into early labor and giving birth to a baby who has prematurely passed away.

I pray every week for God's will to be done as He sees fit, but meanwhile I selfishly hope for at least one more week with my child in my womb. The weeks have slowly added up, but I still have nearly 20 more to go, and that's a lot. What would have been the final 20 weeks of my pregnancy with Lily were spent grieving. At times it felt like time stood still, while other times, I couldn't believe how quickly my due date came and went. I have prayed more for my unborn child during this pregnancy than I did with either of my previous pregnancies, and it has brought me much needed peace, especially when I'm 19 weeks and 3 days.

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.

Wednesday, January 5, 2011

7 months and birthday cake

For the most part, I happily welcomed the new year this year. I've never really been one to get too excited about a new year. I'm not big on new year's resolutions or the idea of starting a new year fresh. I like to think of each day as a fresh start, no matter what year it is. This year was a little different. 2010 was not my best year, although, it also happens to be one I never want to forget. So, to see it come to an end was bittersweet.
We had a wonderful Christmas with our son despite the obvious hole in our family. Our son seems to understand the meaning of Christmas, which makes me proud. He knows that Christmas is Jesus' birthday, although he kept asking where Jesus is and whether there would be birthday cake involved. This gave us the opportunity to have an incredible conversation a few weeks ago. I tried to explain that Jesus is in his heart, but that didn't seem to satisfy his curious little mind. I went on to talk about Jesus being in heaven, and this intrigued him. His interest in heaven compelled me to share that Jesus is in heaven with Lily. I've been thinking more and more lately about how and when the time would be right to tell him about Lily, and now that he is aware that he will be having a baby sister, I'm thinking about it even more because I want him to know that she is not his only baby sister. Before Lily died, he was aware that there was a baby in my belly, and he had decided on his own that it was a girl. I've wondered recently if he thinks I am carrying the same baby that we've made mention to for nearly a year. I certainly don't want to confuse him by saying more than he can comprehend, but I also don't want to dismiss the life that she had when he was so aware of it. I have pointed out that his baby sister, Lily, is in heaven with Jesus, and his other baby sister is in my belly getting big and strong just to make sure he isn't confusing the two.
Who knew that the explanation about the meaning of Christmas would open the door to talk to my two year old about Lily. I had a feeling that when the time was right to talk to him about her, I would know it, and I'm so glad that it happened that way. It was heart warming to look into his big blue eyes as he listened very intently and nodded his head as I talked. He even asked to pray for Lily that night, which was incredibly touching since his recent prayer requests have been for things like the characters from Madagascar and Cars.
So, if Lily and Jesus were in heaven together on Jesus' birthday, do you think they shared birthday cake?
Owen thinks so, and who am I to argue with that? :)