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, May 31, 2011

Memorial Day weekend

As an American, I am humbled, honored, and full of pride for my country when I think about Memorial Day, and all that it means. With that said, I will forever have memories about what this holiday weekend has meant to me personally over the last year.

On Wednesday of last week, I remembered my 18 week sonogram appointment that I had when I was pregnant with Lily. It was the Wednesday before Memorial Day weekend that this appointment took place. Last week, I thought about the conflicting thoughts and emotions that I had when I left that appointment. I wanted so badly to feel hopeful and to cast out fear, but I had such a sinking feeling that, unfortunately, turned out to be my reality.


I remembered the phone call that I had with the doctor later that same afternoon. She began the conversation by saying "I'm very concerned". She proceeded to list the many abnormalities that showed up on the sonogram earlier that day. She rattled off information about dilated ureters, a thickened nucal fold, and brain structures that were not clearly visualized. I listened intently and took notes as she spoke. I very clearly remember her saying that this was definitely not an isolated birth defect, and that due to the multiple abnormalities, our baby likely had some kind of "chromosome abnormality or syndrome". She went on to suggest a higher level sonogram, and she suggested that we get it done as soon as possible. Her urgency hit me like a ton of bricks. I hung up the phone and sobbed.



Thursday of last week, I remembered the appointment that we had in Annapolis last year just 24 hours after we found out we were having the baby girl we always wanted. It was there that I had the very surreal experience of meeting with a genetic counselor who educated us on the many chromosome abnormalities, all while I wondered why she was going into so much detail about such horrific birth defects. Surely, this couldn't apply to us, I thought. I had myself convinced that our baby had Down's Syndrome, not a life threatening condition. I remembered her very sincere and patient approach. Although our local doctor had mentioned that the brain structures were not clearly visualized, I minimized this assuming that it was due to a faulty, low quality sonogram machine. I didn't realize that it was because the brain structures were not there. The reality was that our baby only had one "brain structure", not two. I remembered the way she looked at me, as I sat in disbelief listening to the facts and looking at her DNA charts. I remembered the way she hugged me after I used the last tissue from her box. I thought about the way the doctor delivered the worst case scenario news to us. We left the examination room to be greeted again by the genetic counselor who offered me another hug in the hallway. She knew that the doctor was only confirming her suspicions, and that we were now faced with a very harsh reality. I thought about the ride home, and the way that we delivered the news to our families. I thought about their reactions. Although this all occurred one year ago, these details will be forever burned in my memory.

Needless to say, the remainder of this weekend last year felt nothing like a holiday to me. We cancelled the plans that we had to go out of town. We had planned a fun-filled trip for our nearly 2 year old son to enjoy the remaining time that we would have with him as an only child. Little did we know that he would never meet his sibling, and that he would have much more one-on-one time with us in the months to come. Instead of watching him smile and laugh all weekend, he watched me cry and grieve.

This year, we spent this weekend together as a family. We planted a memorial garden for Lily at home. We've been talking about doing this ever since we moved here last year. My mom took me to a local nursery, and helped me select the perfect things to put in the garden. I love that Lily's grandmother could be a part of making her garden so special. We even included a couple of plants and flowers that were able to be moved from my parents' yard to her garden. Nearly everything we planted has some special meaning, whether it is one of my favorite flowers or its name simply brings me peace and makes me smile (Touch of Heaven and Lily of the Valley). Creating this garden has given me a special place at home that I can look and instantly think of Lily. Doing this also allowed me to give this weekend a different meaning, and to feel inspired and hopeful.

I have a different perspective now on what Memorial Day may be like for so many other American families. I've thought a lot this weekend about all of the parents who have lost their children. Although I never experienced life with Lily, she was still in my life and will always be huge part of my life. She is my baby, and losing her has been like losing a part of me. Although Lily didn't fight in a war, she was fighting the battle of her life before her life even began. Memorial Day, like so many other days, will never be the same for me.

Tuesday, May 10, 2011

11 Months

With my pregnancy hormones in full swing, this has proven to be a very difficult month for me as I find myself just one month away from the time we lost our Lily, as well as the time we will meet our second daughter. It seems strangely conincidental that the timing of the one year anniversary of Lily's death is so close to the pending birth of our baby girl, who is due to arrive just a week and a half after Lily's delivery date.
Over the course of this last month, the realization that June may be an overwhelming month for me is an understatement. Although this pregnancy has gone by fairly quickly for me, especially once we were reassured that our baby appeared healthy, the realness of another delivery is upon me and has hit me hard. Once I hit the 30 week milestone in my pregnancy, I was immediately overwhelmed by emotion. I found myself fearing the worst possible outcome, and thinking about it at the most random times. It could be that I would remember pieces of another mother's tragic story of loss or that I would hear lyrics in a song that made me think of Lily, and next thing I knew, I was wiping away tears as I drove myself to work or to pick Owen up from daycare. These moments almost always hit me when I am alone, which always seems to be when I'm in the car. I am 35 weeks pregnant now, and thankfully, some of this has eased up a little.
Over the next 5 weeks, I anticipate many more ups and downs, waves of irrational fear, and emotional meltdowns. It was during this time in my pregnancy with Owen that I began to fear the labor and delivery process. I wondered how bad it would be, how much it would hurt, and how strong I would be. After experiencing the physical pain of labor and the emotional pain of delivering my deceased child, I now know how strong I am. That is no longer in question.
In preparing for my third delivery, I fear how healthy my child will be and if anything will go wrong during delivery that could jeopardize her health or her life. I realize that the statistics are in my favor, and the chances of something going wrong are slim; however, I also know what the statistics were that Lily would have Trisomy 18,and I never would have guessed that my family would be a part of that very small number, so I know that anything is possible.
I spent the majority of Mother's Day alone with my son, yet surrounded by all three of my children. I thought for a moment about the fact that while Owen was here with me, Lily was here in spirit, and our newest miracle was in my womb. They each consumed me physically, mentally, and emotionally throughout the day, and I was full of gratitude. I kept myself busy, and tried not to focus too much on the fact that it was pretty quiet and peaceful with only one child to play with instead of two.
My husband recently pointed out that I have been pregnant now for 13 out of the last 16 months. I thought about this a lot on Mother's Day, and realized that the experience of growing and nurturing your child while patiently anticipating their arrival into your world is the best gift you could ever have on Mother's Day, and I have been blessed to experience this feeling three times. What an amazing gift.
As I remind myself of my pregnancy mantra...Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God... my fear disipates and I am full of HoPE.