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, August 16, 2011

My Rainbow Baby

Although I haven't written a post for the last several weeks, Lily's blog has been heavy on my heart. If you've been following my blog, you know that our second daughter, Ainsley, officially joined our family eight weeks ago. I think I was still in the hospital following her delivery when my husband asked me if I was planning to continue this blog. As I have said numerous times, Ainsely does not replace Lily and her being here should not interfere with me writing, so of course I am going to keep the blog going!... but then there's the reality of my time being consumed with caring for her and our toddler, and sleeping whenever I can, which has prevented me from posting another entry. Not that I am complaining for one second about caring for my new bundle of joy. In fact, my husband often tells me that I shouldn't hold Ainsley so much because she will get spoiled. If holding her and kissing her will make her spoiled, so be it. I just can't get enough of her!! So, be assured that while I may not be able to write as often as I would like, I am not ending this blog anytime soon.

Rainbows have been on my mind a lot lately, and seemed like a fitting topic for a blog entry. A good friend of mine, Beth, introduced me to the concept of "rainbow babies". For those who don't know, a rainbow baby is a baby who comes into a family following the loss of a baby. I hope she doesn't mind, but I have copied her words from a message she sent me several months ago that perfectly describes this concept. ""Rainbow Babies" is the understanding that the beauty of a rainbow does not negate the ravages of the storm. When a rainbow appears, it doesn't mean the storm never happened or that the family is not still dealing with its aftermath. What it means is that something beautiful and full of light has appeared in the midst of the darkness and clouds. Storm clouds may still hover but the rainbow provides a counterbalance of color, energy and hope." (Thanks again Beth!)

Ainsley is our rainbow baby, and, obviously, since this concept was introduced to me, rainbows have had a whole new meaning.

Just a couple of weeks before Ainsley was born, I took our son, Owen, to the hospital to visit my aunt. While we were walking to her room, we noticed the most amazing double rainbow. It was beautiful. Despite the fact that the definition of a rainbow baby would have referred to Ainsley, seeing this rainbow made me think of Lily. In addition to the rainbows, just being in the hospital made me think of Lily. Being there also made me think of Ainsley's pending arrival and the fact that I would be a patient in labor and delivery for a third time in just a couple of weeks. As I was staring out the window at the two rainbows, I thought of both of my girls.

A couple weeks later, Ainsley was born. We rejoiced when she finally arrived. I couldn't wait to bring her home. The very day that we got home, I noticed that the lilies that we planted in Lily's garden had bloomed for the first time. These gorgeous pink lilies seemed like such an obvious sign to me that Lily was smiling down on us and welcoming Ainsley into our family. I believe that she knows that bringing our little girl home would finally give me a sense of peace and comfort.

As I mentioned in my last entry, Ainsley was diagnosed with ASD, a hole in her heart. Since that entry, she has had some difficulty breathing and has also been diagnosed with VSD, a second hole in her heart. She is being followed by a pediatric cardiologist to monitor it. Upon learning this news, we were devastated. We don't want our little girl to hurt or suffer for even a second. After we finally met with the specialist and had a third echo done, we were told that if these holes do not close on their own, surgery may be required. In Ainsley's case, this would mean open heart surgery to put a patch over the hole. Our family and friends began to pray for our little rainbow baby, and we felt ourselves in the midst of yet another storm.

The day after we met with the specialist, Ainsley's big brother was coloring and drawing with a new pack of markers. He asked if I would help him draw a rainbow. Now, he has no idea that rainbows are of any significance or that they carry any special meaning. While we drew, we talked about the double rainbow that we saw about two months ago, and I thought about all that has happened in the last two months. Drawing rainbows with my son that day reminded me to think only of the calm and the peace that comes after the storm, rather than focusing on the storm itself.

I began writing this entry last week, but didn't get a chance to finish it. Last night, we had dinner with my family, which included my niece, Caroline. You may remember her paper plate picture that I shared in a previous blog entry. Well, I just have to share her artwork once again. I just can't help myself. It is the perfect ending to this entry. Before dinner, Caroline handed me an envelope with Ainsley's name on it written in pink marker, and she simply said "this is for Ainsley". We didn't open it until we got home, but once I saw her drawing, I couldn't contain my smile, and I just had to share it.