Fear

Sometimes I feel like I'm living my life fearing the future, and barely getting through the present. I think about all of the uncomfortable things that have yet to happen, and I dread how I will ever survive them. I've been doing this ever since we found out that Lily was sick.When we found out about Lily's diagnosis, I feared having to share the news with our family and friends. I didn't want to answer the same questions over and over. The same questions whose answers I didn't completely understand at the time. I feared leaving my house because I didn't want to run into someone who didn't know that our baby was sick. I couldn't pretend that I was okay when I was already grieving the loss of a life that I created. I didn't want to hear strangers make comments to me about my baby bump because all I could think about was the fact that my baby was dying. No one expects to hear that when they ask when your baby is due or what you're having. I feared returning to work because I couldn't stand the thought of people talking to me about my pregnancy or my baby. I feared crying in my office by myself, or worse, in front of my clients who had come to me for help. How could I help someone else when I couldn't even help my own baby? I feared going back to church in those initial weeks following Lily's death because I knew I would break down, and I couln't bear the thought of strangers looking at me with pity, not knowing why I was so sad. I still sometimes fear going out because there seem to be pregnant women, infants, and the most adorable little girls everywhere, and they all make me think about Lily, and the life I wish she could have. I fear the end of the summer and the beginning of fall when I would have been reaching the end of my pregnancy. I fear my due date arriving. I even fear Christmas this year. As soon as we found out I was pregnant, we talked about the fact that last Christmas was the last one that Owen would have without a sibling to share the joy. I already fear Memorial Day weekend as I will probably always relate it to the time we learned that our baby would not live. Of course, I also think about June 6, which will always be the anniversary of Lily's death, the first and last time I ever saw my baby girl.I realize that I am preparing myself for the worst, and probably spending way too much time predicting what hasn't even happened yet. I know that I should be thinking more about today, and taking it one day at a time, but somehow I get through each day by dreading the things that haven't happened yet. Then, when the time comes, it actually doesn't seem that bad. I am surprised at how far I think I have come already.Going back to work wasn't as bad as I had predicted it might be. Going back to church was actually the best thing I could have done. Maybe October won't be that bad either. I will get to meet my new nephew, and that will be wonderful! I will keep myself busy in December, and we will somehow make Lily a part of our new holiday traditions. I'm hopeful that we will continue to look for ways to keep Lily's memory alive, and to offer something to the community and other families facing the loss of a precious life. This will keep me going day after day, and eventually, maybe, I won't have anything to fear.

Lily

It is with such a heavy heart that I write this blog entry. I've been wanting to write about Lily's name, and I think this is the best time to do it.

Lily was a name that we have liked ever since we started talking about having children, and really, even before that. When I was a little girl, I had a stuffed animal that I had named Lily- a soft, comfy white teddy bear. When I was pregnant with Owen, if he had been a girl, Lily was the name we had chosen. When we began talking about names this time around, I realized that Lily was becoming a popular name.

After Owen was born, a couple who attended our church named their baby girl Lily. She was diagnosed with spina bifida, and I was amazed at her family's strength and faith as they faced the reality of having a baby with a medical condition and probable physical limitations. I had the privilege of being a part of their church family, and hearing them talk about their baby girl, and their hopes and dreams for her. I remember wondering if we would ever have a Lily of our own someday.

More recently, one of my co-workers, who was pregnant and due four months before me, planned to name her baby Lilyanna. I remember telling her how much I had always liked that name.

When we found out we were having a girl, we took that name off of our list because we wanted to select a name that could be unique to our baby. We came up with two other names that we both really liked. When we learned about Lily's diagnosis, everything seemed to change, even her name. The other names that we chose reminded me of pony tails, hair bows, lipgloss, and a little girl who would melt your heart with her smile. When we learned that we would never have the opportunity to experience life with our daughter, we knew immediately that she was the Lily that has always been in my life and in our hearts. She was unique and special. Naming her Lily didn't make her any less unique than anyone else. We no longer had to worry about her sharing her name with other little girls in her class, or anywhere else she may be. It was okay for her to share her name with other Lilys in heaven.....which brings me to the hardest part of this entry.

Earlier this week, my co-worker's baby girl, Lilyanna, passed away. Her Lily was just three weeks old, and was beautiful and healthy. My heart goes out to her, and I think about how much harder her loss must be compared to mine.

I was given a diagnosis (actually 2), and lots of information and articles about Lily's conditions. I have had the support of the medical professionals who diagnosed and delivered her. We knew that our Lily was not going to live before she ever left my body. We were educated about her diagnosis and her prognosis. That certainly didn't make it easy, but we began grieving before she was even gone. It was a terminal illness that allowed us to begin preparing for the loss even before it happened.

Lilyanna's family may not have the opportunity to get these kind of answers that are so helpful in understanding and healing. She was delievered at full-term with no known medical problems. She was joyfully welcomed into the world by her family and friends, who never suspected that this would happen. This is a kind of loss that I cannot imagine. I cannot pretend to know what her family is feeling. I only know how I feel without my Lily, and it is a feeling that I would not wish for anyone to have in common with me.

I'd like to think that my Lily is with Lilyanna, and that they are finding peace and comfort with each other. Obviously we would prefer for them to not have met this way, but I've realized that it's not such a bad thing for Lily to share her name with one of her newest friends.

It's all about perspective

Lily’s death has put a lot of things into perspective for me. I wrote earlier about my feelings of guilt as a result of insignificant complaints. I think about this a lot as I listen to other people complain about the miracles in their lives. Pregnant women may complain about being too hot, too big, too swollen, etc. I was one of these women during my pregnancy with Owen, and I recognize now that I failed to take enough time to talk about what a miracle it was that I was creating a life. I should have had an attitude of gratitude. My weight gain and water retention really could not be compared to my healthy, beautiful, perfect baby. In the end, we all say that the woes of pregnancy were well worth it, so why complain about it?
People complain about the struggles of parenthood too. I am one of them. My toddler, who is very much like me, has been a true test to my patience recently. He is very independent and he knows what he wants. Now, these are traits that could serve him well in the future; however, it proves challenging when we are trying to get him dressed to leave the house, and he doesn’t want to wear the shirt that I have picked out or the sandals that match. He’ll tell me “No sandals Mommy! “hip fops”!” (flip flops). He may not want to brush his teeth at the exact moment that I would like him to, and I hear him firmly say “don't want teef” (I don't want to brush my teeth). While these moments can be frustrating, I have been reminding myself more and more lately that I am blessed to be his mother. God chose me to love him, to teach him, and to guide him. I used to feel like I was losing my patience in these moments, but now I feel like I lose my patience with those parents who lose their patience. Does that make sense? It is much easier for me now to recognize my blessings, and I wish that other parents could see how much of an honor it is to bring a child into the world and be given the gift of that child’s life to nurture and protect.
I will never have the opportunity to be Lily’s mother in that respect, but I do recognize the privilege that I was given while she was in my belly. I was her safety zone, and my body kept her protected as long as it could. This was truly an honor. I do not want to question why her time with me was so short, rather I want to celebrate the gift that I was given in that brief period of time that I held her close.
People comment to me that at least I have Owen to focus on, and while I acknowledge that he gives me more than enough to focus on right now, he does not replace Lily, nor do his toddler tantrums allow me to be distracted long enough to forget her. She will always have a very special place in my heart that can never be replaced.

From "with child" to "with grief"

I can only equate my grief with the worst kind of roller coaster ride. I actually love roller coasters, but I feel like I've been riding on one that is too jumpy or jerky, and with too many twists and turns, or maybe it's more like that feeling you get when you've gone on too many rides too close together after eating some really gross and greasy amusement park food. Okay, you get the point. It's bad. It's hard to keep up from day to day. I had a few really good days, then I had an awful day. One day last week was so bad that I couldn't even bring myself to compose words. I tried to write, but nothing came out. I found a website devoted to blogs written by those who have lost a baby. I read other women's blogs for hours that night. I cried most of the night, and stayed up way too late. I suffered the next day at work, and even shed tears that day in my office. (Thanks to one of my co-workers, I wasn't completely alone) This is really, really hard.

I know that this happens way too often, and that other women can relate to my story in some ways, but it is still amazing to me to read that another woman out there actually shares my exact thoughts and feelings. One particular blog entry really hit home. This mother lost her baby at 25 weeks. This is an excerpt from her blog:

"Sometimes its like I'm pregnant with your memory--I can no more put you down and walk away from you than when you were safe inside me. I can't feel your kicks in my belly anymore; now you kick in my heart. You're here but you're gone and you're never coming back."

It's crazy to me that I can feel so alone in this process, then read something like this that strikes so close to home. Is it possible that other people really know how this feels?

Although I feel much emptier now than I did when I was carrying Lily, in some ways I do feel "pregnant" with grief. My grief temporarily is defining me; it is all I can think about. Sometimes, it is all I want to talk about. Other women who have experienced grief like this can relate, but those who haven't may try to understand, but they really don't. I am seven weeks pregnant with grief. In a typical pregnancy, seven weeks is just the beginning. I fear that this is just the beginning for me too. No matter what I do, I cannot separate myself from it. I cannot decide to not carry this with me today; it is here to stay. At times, it is so uncomfortable that it causes me physical pain.

I can't seem to get my mind off of everything to do with little girls. Hair bows, summer dresses, tutus, tights, even those cute bathing suits with ruffles. I see little girls everywhere I go, and they are all so beautiful. Just seven weeks ago, I had dreams of brushing my daughter's hair, painting her nails pink, taking her to dance class,and teaching her how to use make-up. Now, I have dreams about how she felt in my arms on the one and only day that I was able to see her and hold her. I dream about her tiny hands and feet, and the peaceful expression on her face.

Usually things get easier after the first trimester. I hope that will hold true for this "pregnancy" as well.

Prayers

"I have unanswered prayers" is the first line in my newest favorite song, but it's really got me thinking. Have my prayers really been unanswered? Selfishly, of course, I wish I could have my baby girl still in my womb, and prepare to meet her in October; however, my prayers were for her to be healthy and safe. Although she is not going to be in my arms in October, she is in God's arms every day. I believe she is healthy and safe now. I guess that means that my prayers have been answered.

My prayers now are for myself, my husband, and my son. I pray that we continue to grieve the loss of our little girl in the healthiest ways possible. I pray that my husband and I continue to remember our daughter, and talk to each other about her and about our feelings. I pray that I do not let my grief override my role as a mother to my son or as a wife to my husband. I pray that I can use my experience in a positive way. I look forward to becoming more involved with organizations designed to educate and offer support to the community like the Trisomy 18 Foundation or the March of Dimes. I'm not usually one to ask others for favors, but I would like to ask anyone reading this if you would also pray for us as we continue to grieve. We might seem like we're okay, and you may even catch us smiling, but we are still hurting inside.

I pray also for anyone else who has just recently received a diagnosis as devastating as Lily's. I will continue to pray for the unborn children and their parents as they struggle to understand and cope with the idea that they have been given a terminal illness even before their life has begun. As rare as I understand that this is, I pray that those families will find strength in their support system, and that they will feel the comfort of prayers coming from a complete stranger. I know that this has certainly helped me.

1 Month

It's been one month since we lost our little girl.

I went back to work today for the first time since May 25. When I left work that day, I was so excited to have our sonogram the next morning. I thought that when I returned to work the next day, I would be able to share with everyone our baby's gender. I thought I would be making plans to go shopping since I had been holding out until we knew for sure if we would be buying pink or blue. I had no idea all that was about to happen. I didn't know that I would not return to work for six weeks. I didn't know that I would be delivering my baby, handing her off to someone else, and saying goodbye forever. I didn't know that I would be communicating with a funeral home or composing an obituary. I didn't know that I would come back a completely different person. My life changed forever during these last six weeks. I will never be the same, but I know that this was God's plan for me.

It probably wasn't the best idea to return to work on the one month anniversary of our baby's death. I knew I had to go back sometime, and that it would probably never be easy. It was a reminder of how things were when I was there last. I was happy. I had a baby bump, and was starting to wear maternity clothes. I had been told that I was glowing.

My "glow" is gone. I tried really hard to keep it together and not to cry. I expected it to be a rough day. Within fifteen minutes of being there, I weighed an envelope to be mailed, and was caught off guard when the scale read nearly 7 ounces. I immediately thought of Lily, who weighed just 7 ounces. As I carried the envelope out to the mailbox, I tried to remember feeling the weight of my baby girl in my arms. Although this experience took place within about two minutes, it stuck with me all day.

Several of my friends called me or sent me texts just to let me know that they were thinking of me. My husband sent me flowers. Many of my co-workers welcomed me back with hugs. Some didn't say anything. It was a reminder that I have to go on. Life goes on. Everyone else goes on with their day as if it is just another day. For me, each day that passes is another day without my baby, and one more day since I last saw her. I don't ever want her to be forgotten. I resent it when people don't say anything to me because they don't know what to say. Obviously, no one will ever say anything to make me feel better, but I appreciate those who acknowledge that my daughter existed. I don't want to pretend that this experience is done and over because she is gone. It's not "over" for me. I want her memory and her spirit to live on. I love those people in my life who have acknowledged that I need support and although none of them know what to say, I appreciate them even more for just saying that.

Maybe this next month will start to get just a little easier. A lot has changed for me during the past six weeks. I didn't talk to anyone other than my husband, sister, and parents for the first couple of weeks, and now I am publicly expressing my feelings for the world to read. Who knows what this next month holds for me? In the meantime, while everyone else is going through the motions of their everyday routine, I am embracing my grief, and putting myself in the vulnerable position of expressing every raw emotion as it hits me. I'm hopeful that this will help me, and maybe someone else too.

Fireworks and "The Silver Lining"

Thinking a lot about my little girl today. It's the 4th of July, and Duran's favorite holiday. It brings me joy to think that Lily will be watching beautiful fireworks all night from the best seat in the world!
Our genetic counselor told us that the "silver lining" for us is that Trisomy 18 does not tend to be hereditary. We have opted to have genetic testing to be sure that we are not carriers. I just found out the other day that my blood work has all come back normal, which means that all of my chromosomes are as they should be. This is really good news! This means that it was not my genetic makeup which caused Lily's abnormalities. Trisomy 18 usually is a random occurence, and now we are fairly certain that it was in this case as well (we'll know for sure once Duran gets his blood work done). Our doctor shared with us that a typical Trisomy 18 case most often occurs due to the mother's egg. However, Lily's case was not a typical Trisomy 18. Since she had Isochrome 18q, we may never know if it was the egg or the sperm that caused this problem. I'd rather not know anyway. What I do know is that if and when we choose to get pregnant again, our recurrence rate is no different than anyone else's chances of having a baby with a chromosomal abnormality, about 1%. At this point, this is the best news we can get!