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, December 9, 2010

6 Months

Six months is a long time. It is half of an entire year. It is longer than I was even pregnant with Lily, but not long enough to forget any bit of it.

Duran and I recently went to a memorial service that our hospital coordinates every year in December to remember the babies who have gone before us. It was an overwhelming experience for me. I'm not sure what I expected it to be like, but I was surprised at the number of families who all joined together in a quaint little church to light candles for their babies. Although we didn't know the majority of the people there, it was somewhat comforting to be in a room full of people who have also experienced the grief and sorrow associated with saying goodbye to a baby before their life has even begun. We chose to light a candle for our Lily, which felt really good to have a solid and tangible reminder that she was here just six months ago and that she had life.

Obviously, we don't want to only remember Lily at Christmastime, but this annual service was a great opportunity to carve out a special time in the midst of this busy season to stop and think about only her. No distractions. No thoughts of shopping, wrapping, decorating, baking, etc. In fact, it is during the busiest times that I want to think about her the most. I want to push pause on the lists and the plans, and remember my daughter because that brings me peace. You see, it doesn't always make me sad to think about her. Most of the time, I feel joy and peace. I feel whole. So, six months after kissing my daughter goodbye, I've realized that not only has she taught me what is most important in life, but she really is my angel. I have reiterated a number times that her life had purpose, and the more time goes on, the more defined this becomes. One definition in my dictionary for the word angel is "a guardian spirit or guiding influence". She keeps me grounded and focused. She gives me direction and purpose. She has been the "influence" I never knew I needed.

Friday, December 3, 2010

Deja-Vu....but much much better!!!

We made yet another trip to Annapolis yesterday. We went there to meet with Melissa, our genetic counselor, and Dr. Sweeney, the doctor who diagnosed Lily. This trip served a different purpose than the original trip, but in some ways felt the same. I didn't surround myself with tear filled tissues in the car on the way there this time. I intentionally tried to create a calm environment and I chose to spend the drive time reading my bible and talking to my husband without distractions (which doesn't happen real often). As we got closer and closer to our destination, I could feel knots in my stomach as my anxiety increased. I tried to calm myself down as best I could, and I walked into that office feeling an overwhelming sense of deja-vu. I reminded myself that we were there for a different reason this time, and that hopefully this visit would not result in devastating news.

A couple of months ago, we learned that Lily is a big sister! This was actually quite a surprise to us, and yet, another reminder that God is always in control. He knew that the time was right for us to have this experience, and I have tried to embrace His plan wholeheartedly. We obviously want for our family to grow and we have been beyond thrilled, but also, terrified. I've never experienced such mixed feelings as I have over the last couple of months. I had never felt this kind of worry and anxiety with my last two pregnancies. I was blissfully ignorant to the possibilities in the past. I wish I could feel that way again. Naturally, we couldn't wait to see Dr. Sweeney again to, hopefully, get some reassurance that all is well so that I could calm down.

The 40 minute wait to be seen felt like an eternity, and I couldn't help but notice a sign in the lobby that apologized for the long wait and explained that the providers in this particular office are often delivering news that their patients may need extra time to digest. I was brought back to our experience receiving news like this the last time we were here, and I definitely appreciated being given what felt like all the time in the world with our doctor, so I guess I could respect the wait time. I didn't really have a choice anyway.

We finally met with Melissa, then Dr. Sweeney. I can't say enough great things about each of them. They have both been so wonderful with us, and always very respectful, patient, and thorough. This experience was no different. Dr. Sweeney spent a great deal of time with us, and was very careful to share every detail that he could at this point. He assured us that everything looks "perfect", which instantly brought tears to eyes. I can't seem to make a trip to Annapolis without crying, but this time, I cried tears of relief, not despair.

Dr. Sweney told us that he always feels worried and nervous about "appointments like this" after the "disaster" we had last time, but that he was extrememly pleased with what he saw. This is the first time I have disagreed with him. I do not believe that our last pregnancy was a disaster. I prefer to think of it as a blessing, although I recognize that it was anything but perfect, medically speaking. Either way, I appreciate all that he has done for us and all that he promises to do this time. It looks like we will be making a trip to Annapolis every month to continue to monitor the baby.

I certainly don't want to spend too much time using Lily's blog to talk about this pregnancy, but it really has made me think even more about her and my pregnancy with her. This baby will never take her place. Whatever transpires over the next six months is outside of my control, and in the hands of the One I trust and rely on most. I will continue to seek peace and comfort on a daily basis because I know that is what He wants for me.

I was reminded of this bible verse last Sunday in church and used it to ease my mind in the car yesterday.

Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. Philippians 4:6

This will be my mantra.

Wednesday, December 1, 2010

It's the holiday season

The transition from Thanksgiving to Christmas seemed to happen at super speed this year!! I'm still spending my days focusing on all that I have to be grateful for as the world around me shifts their focus from gratitude to santa and their own personal Christmas wishes. Now, don't get the wrong idea. It's not that I'm not in the holiday spirit, but I find that each year brings me closer and closer to the real meaning of Christmas, which naturally draws me further away from the commercialized interpretation of the season.

So, before I get too far off of my original intention for the entry, I'd like to take a moment to review all that I have to be thankful for this year, which, I'd like to point out, are definitely not listed in order of importance.

* being able to spend another year with our precious son
* the overwhelming joy of a second pregnancy
* the excitement of feeling like our hopes & dreams were coming true
* meeting our daughter
* re-establishing my purpose in life
* recognizing new ways that I can reach out & help others through my experience
* a brand new emphasis on my faith
* learning the real meaning of peace
* developing humility in the face of tragedy
* a constant reminder of God's ability to heal and comfort
* learning to accept the things I cannot change
* being able to share my story
* having hope for the future

I am in a place now where I can recognize that it is possible to move forward after a tragedy. It is possible to have hope and positivity again. I am thankful for that this year.