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


Thursday, June 7, 2012

2 years

We celebrated Lily for the 2nd year yesterday. Naturally, I thought about her and lots of the what ifs throughout the day, but my overriding feeling was love and gratitude for my child. We invited the same intimate group of family over to send balloons to heaven and to enjoy "birthday cake". Last year, this was the best way we could explain to our 2 year old son what we were doing. We told him it was Lily's birthday party. I anticipated having to elaborate on this as the years went on, but it wasn't necessary this year as he vividly remembered the celebration from last year. He wanted to make sure that there would be cake, and that he could have a green balloon just like last year. He was emphatic that everyone else would have pink and he would have green. He stated that next year, he will send her a blue one, but this year, it must be green. He asked me if she would get a birthday card in heaven. I explained that just like last year, we could write her a message or draw her a picture on our balloons and those would be like cards for her. He was satisfied with that, and initially said that he would like his balloon to say "Happy Birthday", but when the time came, he chose to draw on it and leave it at that. Some may think that it is strange that we choose to celebrate her in this way each year because we never experienced life with her. We never laid our eyes on her while she was living. We don't choose to do this out of grief for our loss. We choose to do this to remember that she was alive. I could never discount the life that she had, regardless of how brief it was. She was a blessing from God. She was a part of me. There is a portion of the evening that has an awkward feel to it, though, as we all know why we are gathered together, but we don't really talk a lot about it. There isn't much to say. Our family's presence says it all to us. So, instead, we watch our children play. We watch the lives before us while we remember the one who is missing from it all. We independently focused on our own balloons and we watched the children among us embrace this new tradition without questioning it. For the 2nd year, I had my own moment of discomfort (although, I'm not really sure that is the best word to describe it) when I knew that everyone was done writing their message or drawing their pictures, and it was nearing the time to let our balloons go, and I just wasn't ready to let go. I enjoyed watching the kids run around with their balloons in their hand, tied to their wrists, or attached to the steering wheel of the motorized vehicle they were riding in, and I wanted to imprint those images in my memory because during those moments, Lily's memory was present. The evening was for her and about her, and while each person held on to the string of their balloons, we all thought about her. I wanted to make it last. When it was time to let our balloons soar, we gathered together and with few words spoken, we released the 1 green and 12 pink balloons and watched them inch their way to the clouds. With my camera ready, I snapped pictures of our balloons in the sky because it really is a beautiful sight and that is the image that I want to have to remember Lily's 2nd birthday celebration. This year has brought some changes. Owen referred to his baby sister as "Illy" last year, but sometime over the last 12 months, he has improved his ability to pronounce his L's, and he is now calling her "Lily". That was a little bit sad for me to be honest. I loved hearing him say "Illy". Another change this year is that Lily's baby sister, Ainsley, was born so she enjoyed the festivities for the first time. Lily's cousin, Quinn, is always fun for me to be around because he is an every-present reminder to me of Lily. Lily would be exactly the same age, and doing many of the same things. This time last year, Quinn wasn't yet walking. He had just started sitting up, and I remember propping him up in the wagon for a ride. This year, he was walking, running, and riding along with the big kids. What a difference a year makes! Tonight, as I reflected on the events of last night, I saw a beautiful rainbow in the sky. I have talked before about the significance of rainbows as they relate to our youngest child, Ainsley. She is my "rainbow baby", my peace and hope after the devastation and the storm. I felt grateful for this obvious reminder of God's faithfulness, and it couldn't have come at a more fitting time. God's timing is perfect; He's been with me every step of the way, and has never left my side.