5 Months

This has been a challenging month for me to get through, and now that my due date has finally passed, the emptiness and uncomfortable anticipation (for lack of a better word) that I was hoping to overcome, has not gone away. I kept telling myself that if I could get over this hurdle, I may feel some sense of relief or even accomplishment that I've made it. Maybe I feel like that just a little, but "relief" is definitely not the word I would use to describe this feeling. It's consistent emptiness, sorrow and even isolation at times. I really kind of thought that might go away, and it's kind of frustrating that it hasn't. In fact that is why this post took a little longer than I would have liked. I kept procrastinating writing another depressing post.

This process can be very isolating. I mean, who really wants to hear about my grief over and over again, unless they are choosing to read this blog, of course. Here, I feel safe to release any and all of my not so pleasant feelings without worrying about judgement. If you are choosing to read this, then you should be well aware that I won't sugar coat it. I try to express my true feelings, as uncomfortable as some of them are, in an effort to get it out and leave it here. It allows me to go about my life without dwelling too much on the negative stuff.

Outside of this blog, however, I'm very sensitive to thinking that other people may expect that I've moved on, and as long as no one mentions the fact that Lily would have been here by now, I'm okay. But, in reality, all it takes is for someone to acknowledge that my baby is not here, and I momentarily melt into a puddle of sadness. I guess that is to be expected. At least, I'll tell myself that for now.

As I move forward this month though, since it is November, I will try to express my thankfulness and gratitude for the life that was created. Although very short, Lily's life was full of meaning and purpose, and I firmly believe, a necessary part of my life. This month, hopefully, will allow for a little more positivity as I focus on these thoughts.

Letter to my Lily

My little Lily bug,

I began fantasizing about having you in our lives beginning in February, nine long months ago. My dearest Lily, we know now that God had a different plan for you. He chose to bless you by welcoming you into His kingdom immediately. He blessed us by allowing us to see you and hold you much sooner than we thought was possible.

I think that you know how much Mommy and Daddy miss you and think about you. I think you know how much I wish you could be here to be with us, but I want you to know that we will see you again. When our Father decides that it is the right time for us to meet again, we will run to you with open arms. Until that day comes, we have decided to think about all of the positive things that remind us of you to keep your memory alive in our hearts.

There is a very special spot at the park where Daddy and I sat one night before you were born. We went there to spend time with you and with each other without distractions. We talked a lot and cried some too. Our hearts were heavy with pain and sorrow. I like to think of this as "our spot" because it is one of the last places we got to take you. Maybe you remember that night too. I have visited that spot a couple of times in the last few months just to feel closer to you. We actually took your brother there not too long ago. Of course he doesn't know that it is your special spot (we'll keep that our secret), but he seemed to enjoy it there too.

We also went to the beach one day during your last week in my belly. We went with Aunt Tracy and Gran. I'm so glad you got to have one last relaxing day listening to the sound of the waves. The beach always makes me feel calm and at peace. I was hoping you might feel some sense of peace while we were there too.

Even though our last days together were not what I want you to remember about me, I know that you are aware of how far I've come since you left my arms. I've talked a lot about you. I love to tell others about you and what you have done for us. Your life really has given me strength, faith and hope.

Daddy and I have thought of lots of ways for us to remember you and honor you because you are so special to us and we love to think about you. You were still in Mommy's belly when we found our new house, and we spent lots of time walking around the yard because we loved it so much! Daddy planted a couple of trees for you, and he has plans to make a garden at home just for you. He's already cleared the space, and next spring, close to the time that we saw you for the first time, he will fill that space with the most beautiful flowers and plants we can find. I love that we can use our yard to remember you because I will always remember that you were with us when we fell in love with it initially.

Even though we have these experiences that allow us to feel closer to you, we still miss your presence terribly. I have been feeling that more and more recently since this is the time that you would have been home with us. We hoped and prayed that you would be in our arms and with our family right now. We looked forward to having you with us for Thanksgiving and Christmas this year. We will miss you so very much. I have a million reasons to think about you throughout the year, no matter what the holiday or month or occasion. Lily, you are so special to me, and always will be.

Sweetheart, you are in my heart everyday, and the physcial distance between us doesn't make me think about you or love you any less. In fact, I can't imagine how I would have loved you any more than I do now. I remind myself everyday how blessed I am to be your mother and to have had the time with you that I did. I will always remember that, Lily. You will always be my little girl.

I love and miss you lots baby girl,

Mommy

Remembrance Day

It's the milestone I've been dreading the most. The month of my due date. I would have been 38 weeks pregnant this week, and anxiously anticipating my baby girl's arrival. I recently learned that October also happens to be National Pregnancy and Infant Loss Awareness month. October 15, to be exact, is "Infant Loss Remembrance Day", the day set aside to specifically remember those infants who did not have the opportunity to experience life. I came across this video and wanted to share it in memory of all infants whose lives were too short. Will you join me this Friday by lighting a candle at 7:00 pm in memory of my Lily?

4 Months

4 months ago, October seemed like a lifetime away, yet here we are wearing sweaters and picking pumpkins already. I was sort of dreading the fall this year, and trying to hold on to the idea of summer as long as possible. Summer is the season that I will associate with Lily, and I hate to leave it behind just as I hated to leave her behind when I left the hospital that day in June.

However, with fall upon us, I am pleased to say that this new season has brought some unexpected positive experiences for me. Duran and I went to Annapolis last week and we had the opportunity to meet an amazing couple who have faced a journey similar to ours. They seemed to understand and relate to our pain and our grief. While it was an emotionally draining afternoon and evening for us, I felt refreshed the next day. I felt like a weight had been lifted off my shoulders. I appreciated the opportunity to talk about Lily to someone who may actually "get it". This experience has made me even more excited about the support group here. My hope is that this group will provide that same opportunity for others who need validation, support, and understanding.

In the last 4 months, we have raised $665.00 for the Trisomy 18 Foundation! I feel so incredibly blessed and honored to have such wonderful friends and family! Each donation has been incredibly heart warming. We appreciate every one of you who have given in Lily's memory. If you are interested in making a donation, please visit http://www.trisomy18.org/goto/LilyGraceHolder. The potential benefits of making a donation are endless. This foundation has offered us education, answers, support, and most importantly, hope.

In the last month, I also began two different bible studies. This is a huge committment, and I was not initially planning to do both, but it has worked out this way, and I have to say that these experiences have already brought me tremendous healing. Speding time doing something meaningful and uplifting has provided me with the comfort and understanding that I need.

I will move forward this month eagerly awaiting the arrival of the newborns who were growing and developing while my Lily was growing in my womb. Certainly, the upcoming births that I have been trying to emotionally prepare for will remind me of what could have been for my baby girl. My nephew, who happens to be due on the exact day that Lily was due to arrive, will be a fabulous reminder to me of the life that I also created. His existence will make it easy for me to always remember my angel, and I can't wait to meet him!

I do believe that my little girl has been watching over me and our whole family, and she wants us all to be at peace and to be happy. I don't want her to know me as a greiving mother. I want her to know me as the person that I long to be- an enthusiastic, energetic, compassionate, positive, giving, caring mother, wife, daughter, sister, and friend. I want her to see me overflowing with joy and passion during my time in this world. I know all too well now that our time in this world can easily be cut short, and I hope to make the most out of mine. Lily probably knows better than I do what is in store for me, and while I am eagerly waiting to see what is next, I believe she is looking down on me smiling because she already knows.

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.

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!

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.