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


Monday, September 27, 2010

Annapolis Bound

Duran and I are headed to Annapolis tomorrow afternoon to be part of a group designed for parents who have had a high risk pregnancy due to chromosome or genetic abnormalities. We are both looking forward to having the opportunity to see our genetic counselor again, and to be able to talk to other parents who have shared our pain. We're excited to have a forum to talk about our daughter and our experience.
Although I have many positive associations with Annapolis in general, it is the place that we learned about Lily's diagnoses for the first time, and the place we are now traveling to talk about how this experience has forever changed us. Now, I may always associate Annapolis with my sweet baby girl. I'm hopeful that tomorrow will be a good day. I'll let you know how it goes.

Tuesday, September 14, 2010

Your grief will turn to joy

I tell you the truth, you will weep and mourn while the world rejoices. You will grieve, but your grief will turn to joy. John 16:20

I'm thrilled to report that there has been some progress with my brainstorming so far, and I thought I'd share some updates.

Two of my co-workers were inspired to use their talents and to share their awesome ideas for things that can be made and given to other families through our local hospital. My co-worker, Mary, and her friend Wendy, used beads to make jewelry, and I was fortunate enough to benefit from their idea! They made me a bracelet and a ring, and I love them both!


Karen has been busy knitting items that can be donated to the hospital for other babies. I have always thought about learning to knit, and I am especially excited now that my interest could have a purpose. Karen has graciously offered to teach me her talent. This is really exciting for me because I love to do crafty things, and even more than that, I love the idea of making things that others can benefit from!

I met with Gail last week from the STAR program at the hospital to discuss getting the support group up and running again. I am super excited about this! The first support group meeting will be held Wednesday November 17 at 7:00. The group will be open to anyone who has lost a baby through miscarriage, during pregnancy, or following delivery/birth. The group will meet once a month on the third Wednesday of the month. If you are interested in being a part of this group, please don't hesitate to contact me for more information.

I have spoken with a representative from the local March of Dimes office, and we have been discussing ways for us to use our experience to educate others about Trisomy 18 and holoprosencepahly. Even the person I have been talking with admitted that she had to research Trisomy 18 after speaking with me the first time because she was not familiar with it either. There may be opportunities for us to share our story at future events and fundraisers for the March of Dimes to raise awareness.

We are continuing to brainstorm ways for fundraising for the Trisomy 18 Foundation. I have spoken with the March of Dimes as well as the Trisomy 18 Foundation, and both organizations are on board with offering support. I have also received lots of support from family and friends about this. Thanks to my sister-in-law, Beth, we are seriously considering moving forward with planning a carnival and family friendly run/walk. Obviously, we are still very much in the beginning stages of planning and things could change. Our tentative idea is for this event to take place around the anniversary of Lily's delivery to be held in her memory. Funds raised will go toward the Trisomy 18 Foundation to help with research, support, and awareness. I'll definitely continue to report any developments with this as things progress.

I'm feeling optimistic as some of my initial ideas have been transformed into reality. It is definitely exciting for me to be a part of something that feels so much bigger than just me and my family. It's about the community and the many other babies, mothers, fathers, grandparents, and family members who have experienced a similarly life changing circumstance. Thank you to those of you who shared your thoughts and ideas. You all encouraged me and gave me hope!

Monday, September 6, 2010

3 Months

I'd love to be able to say that three months after I kissed my angel goodbye I am now standing strong and moving on, but the truth is that I am still very weak. Depending on the day, or even on the moment, I am fragile. I realize now that those "good days" that I've mentioned are only part of the bigger picture which is still ridden with grief.

I realized this more than ever just the other day. Due to my health insurance plan, I had to schedule an appointment with my primary doctor to get a referral for a specialist. I had not seen my primary in nearly 3 years because they were not able to see me during my pregnancies, and apparently, I was pretty healthy during the year between Owen's birth and my second pregnancy, and did not need to go in. I was prepared to see the nurse practitioner for a quick visit, get my referral, and go about my day. Before I could even talk about what I needed the referral for, the nurse asked how things have been in the last 3 years, and if I had children. Ugh. Do I just tell her about my son or does she need to know about Lily too? Well, I thought, they are my doctors and should probably know everything. I was not prepared to discuss this. I took a deep breath, and began to tell her about the birth of my son and the death of my daughter. She immediately spun around on her stool, abruptly stopped writing in my chart, and looked at me with very sincere and empathetic eyes. She talked about her years of experience as a labor and delivery nurse, and her knowledge and first hand experience with babies diagnosed with Trisomy. She repeated the information that we have been told by other health care professionals, and she offered encouragement and comfort.

It's funny, though, because I have had days when I felt strong and empowered and I yearned to tell my story, but this day felt different. I felt overcome with grief in that office and I cried as I talked to this stranger about my baby girl. Although, I assume she has not had personal experience with this issue, she has had professional experience working with other women and families who have. It was as if she could understand where I had been like others really can't.

Being in that office brought some of those feelings back for me that I had when I had my post delivery follow up. It was the feeling of being in a very cold and sterile medical examination room talking to someone who is attempting to bring warmth and compassion to the uncomfortable environment as we discussed my daughter's illness. She talked with me for about an hour, and only spent about 5 minutes talking about the actual reason for my visit, which was completely unrelated to Lily. It felt good to talk about Lily again, but it also stirred up all of those feelings of grief that I've been managing to tuck away day after day.

So, when people ask me if I am doing "better", I'm not always sure how to answer. I usually muster up a smile, nod politely, answer "yes", and thank them for inquiring, but I find myself wondering what it would really mean to "feel better". Of course I have days that don't seem so gloomy, and those days I guess I could classify as "better", but today, three months later, I feel about the same as I did just 1 or 2 months ago. It's not that I sit around feeling sorry for myself or that I mope or cry all the time. In fact, it's quite the opposite. I put on a smile and engage in family activities or whatever the day brings and I enjoy things just as I did before, but inside, I question if our family will ever feel whole again with one of us not here. I wonder if this feeling will ever go away, and if it does, would that mean that I felt better?

While I feel somewhat defeated to not be able to demonstrate a positive progression of grief, this is my reality for now, and I believe that this is a normal part of the cycle. Grief is the ups and downs and the unpredictable moments that hit you when you least expect it. I am still as hopeful as ever, but I am also trying to be more realistic. I know that I need to be easy on myself, and eliminate the idea that my grief should have a timeframe. It can't be compared to anyone else's; it is just as unique as I am and as Lily was.