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


Wednesday, January 18, 2012

21 Day Fast Update

Do not conform any longer to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God's will is- his good, pleasing and perfect will. Romans 12:2

It's been nearly two weeks since I made the decision to be more aware of my thought patterns and to spend more time with God whenever I have the instinct to think something that coud have a negative impact on my feelings or my family and their feelings. In my last blog post, I referenced a situation that my family is facing right now that could be perceived as a negative life event, but I have chosen to think of it in a different way during this fasting period, and hopefully even after that.

Let's just say I've been spending much more time praying than I was in the past, and I can verify that there really is so much power in prayer! Typically, my prayer time occurs in the car as it is one of the few places that I spend time completely alone. Sometimes I pray in the shower or just before going to sleep at night, but I'd really like to dedicate time each day that is specifically for God. If I'm praying while I'm driving or bathing, I am sharing my time with God with other tasks. Like many other women, I multi-task everyday to accomplish all that needs to get done, but God deserves much more than half of my attention and focus, doesn't He? Over the last 11 days, I have prayed at times and in places when I might not normally, and it has been rejuvenating for me.

While I think I'm on the right track, I haven't reached my final destination just yet. I am a work in progress and I'm trying to stay focused on fulfilling God's purpose and His will for me. This fast couldn't have come at a better time. I'm looking forward to the final 10 days of this fast, and all of the time that I will spend strengthening my relationships with God, my husband and my children.

Monday, January 9, 2012

New Year, New Me?

It seems like it's been a while since I've really written out what's on my mind. The month of December was so hectic, as I know it is for countless others. It really has been a bittersweet time for us. We've received some awesome news this month as well as some awful news. We had a week just before Christmas that was such a roller coaster of emotions.

We attended the STAR program's memorial service for a second year. It was so nice to dedicate that time to remembering our angel. I met a fellow STAR parent who has chosen to make a quilt for all of the STAR babies. I was excited to be able to share the five quilt squares that were designed by my family members in memory of Lily for her to add to the quilt. I will post some pictures of our squares soon. They are amazing!


Prior to this service, we had been going through the motions of the typical Christmas preparation and activities. We were decorating the house, shopping, wrapping, seeing Santa, checking out the Christmas lights, going to Christmas parades, getting involved with the Christmas drama at our church, and planning a little Christmas party at our house. We were excited to experience our first Christmas with Ainsley, who is now 6 months old. Our son, Owen, who is 3, was so much fun this year. He embraced the holidays wholeheartedly, and it was such a joy to watch. It was a little difficult to balance my feelings this year as I was so happy to see my two little ones experience the magic of the season, all the while wishing that Lily could be part of the fun too. This would have been her second Christmas. However, the memorial service was a great way to block off a special period of time to celebrate and remember her. I look forward to the year that we choose to take Owen and Ainsley to this service to remember her as a family.


The morning after the memorial service, as I was still a little emotionally drained from the night before, we received some bad news that has negatively impacted our family. We are still digesting this news and learning how to cope with it. Obviously, it is never a good time to receive bad news, but two weeks before Christmas really put a damper on my holiday spirit this year.


Later that same week, we took our 6 month old, Ainsley, to the cardiologist for a follow up appointment to check on the status of the hole in her heart. We are beyond excited to report that the hole is closing!!! While it is still slightly visible, it is significantly smaller, and is now the size of a pin hole. We were told that surgery is definitely not indicated given this progress!! I couldn't have asked for better news at a better time. Just weeks before Christmas, I finally felt at peace about this issue that has been seemingly unresolved for the last 6 months.


Upon learning about her condition in June, I naturally worried about my daughter's health, and the effects that her condition could have on her teeny little body. I recognized after her last appointment that I could not control this issue and that in order for me to be the best mommy I could be for her, I needed to turn it completely over to God. After all, He is the ultimate healer, not me. I wish that this had been my initial reaction, rather going through four months of worry, stress, and anxiety because as soon as I made this very conscious decision, a peace came over me, much like the peace that I feel when I think about Lily and the fact that I know she is okay.


Given all that is going on in our lives right now, I felt like this was one issue that I could safely check off of our list of things to worry about. So, that takes me back to our newest source of stress....I've been talking a lot to my sister, Tracy, about this issue and the wide range of feelings that I am experiencing. After much venting on my part, and attempts to boost me up on her part, she finally suggested that I pray about it. Such simple advice really. Any of you who read this blog recognize that I am a Christian and that my faith is very important to me, so why didn't I think of this?! I know how much I have relied on God throughout my journey with Lily, and I realize that He is the One who has been my constant source of support and encouragement. It is only because of Him that I was not a complete wreck every single day for the months immediately following Lily's death. He allowed me to think more positively and to be hopeful during those times when I could have felt hopeless. I realized recently how much He has helped me to get through the waiting time that was so necessary for Ainsley's little heart to heal itself. It is abundantly clear to me that He is always faithful. So, while Tracy's advice may seem quite simple, as soon as she suggested that, I was speechless. Of course, prayer is the answer! Why do I feel the need to solve this issue, or to analyze a situation that I don't have any control over? For me, it's not even so much about the bad news that we received as it is about the way that I am thinking about it and responding to it. Then I realized, why am I wasting my time with negative thoughts or negative energy? I am here to fulfill God's purpose, and the way that I was responding to my situtation was certainly not something that I think He would be proud of.


I posted some of my thoughts about New Year's resolutions last year, and the fact that you don't need to wait until a new year to make a change. Every day is a new opportunity to make changes and improvements. It just so happens, though, that the new year coincided with my immediate need for change and a new perspective. So, I am, in a sense, taking back the words that I posted just one year ago, and making a New Year's Resolution. It's a big one.


My church just started a 21 day fast yesterday, and after much thought and prayer, I have decided to fast negative thinking. I haven't shared this with anyone, and now that I've put it out there, I know I must hold myself accountable. I wouldn't necessariy describe myself as a negative person overall, but I have tendencies to focus on the potential problems given a less than ideal circumstance, and it just so happens that we have had a few of those over the last couple of years. Given our current situation (which I realize I've been extremely vague about), it will be a challenge for me to remain optimistic, but I believe that God doesn't want for me to focus on the obstacles or the challenges. If I rely on Him, all of my needs will be met. I am reminded of a restaurant manager that I worked for when I was in college waitressing at a crab house in Ocean City. Anytime someone went to him with a problem, he would respond "there are no problems, only opportunities". Fifteen years later, I am still reminding myself of this. I am making a decision to focus exclusively on the potential opportunities. I will be praying diligently for patience and the ability to control my thoughts. This is a skill that I teach others to do everyday, so it's time I practice what I preach, so to speak. Stay tuned for updates on my progress. I have a feeling this could be incredibly eye opening and life changing for me.