The Experiences

May 20, 2013

I am taken aback at the way our story is spreading. I told Robert the other night that something that started out as a way to keep friends and family updated and a way for me to journal about this time has become bigger than I could have predicted. I have mixed feelings about this, not because our story is a secret, but because I wish we didn’t have this story at all. I feel like I’m standing naked doing my ugly cry in front of all of you (NOT PRETTY). But then I hear stories that make me feel like this is indeed the right thing to do. For instance, my older sister Jenny called me the other day. For those of you who don’t know, she’s the best hairdresser/therapist in the whole wide world and that is simply a fact. Her friend from college had come in to get her hair done and brought her new baby with her. They were talking about how incredibly blessed they were that they hadn’t experienced any major complications with pregnancies and had 7 beautiful healthy children between the two of them. Then this friend started telling my big sister about a blog she had read about a woman having a baby who had a fatal birth defect and proceeded to tell my sister OUR story. Jenny thought it might be me, but she was positive after her friend mentioned the name Annie. I cried and had goosebumps while Jenny told me how much our story had touched her friend and how she had been praying for us. Another friend this weekend told me through tears how much our story has helped put things in perspective and how she feels closer to her own daughter because of it. This is why I am (sort of) comfortable sharing, even though it’s hard.

On the outside it may look like I am handling this whole experience well. On the inside it’s a different story. One day last week Robert had to leave work a few hours after he got there and come home to help me. I wasn’t feeling well and was having what I call a “heavy” day. I couldn’t muster the energy to even leave the house to take the girls to school. He took them for me, and I spent the entire day in bed alternating between sleeping, googling, and sobbing. My head was pounding and I was crippled with grief. The very next day I had more energy than I had felt in a long time. I did all the laundry, reorganized cabinets, cleaned the house, made dinner, and was present for my children. I just never know how I’m going to feel from day to day. I also never know what is going to trigger my sadness. I seem to be less in control when I am physically depleted.

This past weekend was busy from start to finish so I was exhausted, and there were several episodes where I couldn’t contain my tears. On Saturday morning I took the girls to Cuppies & Joe for their “story hour”. I was sitting back watching my girls from a distance while they listened intently to story books and drank their chocolate milk and the thought crossed my mind that I won’t ever get to see Annie enjoy a story hour. Then I just became the weird chubby lady crying in the corner eating a cupcake for breakfast…  

The next day we were in the car and the girls were singing the Pink/Nate Ruess song at the top of their lungs and I cried because I desperately want to hear a third voice chiming in.

I cried watching my niece open her presents at her 2nd birthday party.

I cried watching my friend’s mother give her a beautiful toast to celebrate her law school graduation.

All milestones small and large that I won’t have with Annie.

I’m trying to be understanding of the way others are dealing with this experience, but sometimes it’s difficult. I have scoured the internet for information in order to prepare myself for the day of Annie’s arrival, and Robert hasn’t even googled anencephaly once. He says he knows what he needs to know, and he’s ok. I cry all the time and I seem to want to talk in circles about things, and he remains calm and steady. I have told him that I worry he is in denial about what is going to happen, and he just calmly explains that we handle things differently, and that’s all right. I know he’s right, and if we were both a mess all the time nothing would get done around here. I am so thankful for his strength and leadership in this time. I know he is hurting as well, and his behavior and performance in spite of that hurt have amazed me and made me fall in love with him all over again.

One of the more painful (and sort of unexpected) reactions I have had to deal with was immediately after we received Annie’s diagnosis several people declined to look at her ultrasound pictures. I can understand now how it may have been too soon for some, they may have not had enough information, or it was just too painful to look at her little hands and feet or her profile. I, on the other hand, needed to celebrate this baby for as long as I can. That’s why we decided to announce her sex and name to the world via social media because I AM having another baby girl. Her name IS Annie, I AM excited, and I DO love her. I wanted to show her sweet little pictures to anyone and everyone I could, because she is my daughter and I’m proud of her. Now after reading several books about grief, death, and processing, I understand that we all grieve in our own way and I can’t force my way on others.

I SO appreciate it when people acknowledge her. It can be awkward at times when my protruding belly is the elephant in the room that no one will talk about. It’s painful, but it’s my reality right now so it’s ok to discuss her. Last night at dinner with friends I was so thankful that two beautiful women (who both have babies in their bellies as well) took a few moments out of a fun and light hearted occasion to talk with me about how I was feeling and what was going on with my baby. (I love you girls!)

About a month ago during my internet trolling I came across an article about anencephaly that infuriated me. The article discussed how ridiculous it was for women to carry these babies to term because they are blind, deaf, can’t feel pain, can’t think or experience anything. The article declared my Annie wasn’t a human being because she lacks these abilities. At first I was so angry I couldn’t see straight. Then I realized I had been so consumed in my own experience I hadn’t for one moment considered what her experience was like. I felt awful. What is life like for Annie? Is she just existing in nothingness? Is she human?

The answer to that final question is ABSOLUTELY yes. She is a human being and a creation of God. She is my daughter. She is a beautiful soul. I believe God is in communion with her at this very moment, and He has a purpose for her. I’ve seen it. I believe that God communicates with all of his children in individualized ways just as I do with my own children. Some people are able to hear the audible voice of God. Dylan says that God sounds handsome (to be fair her experience of God’s voice is Val Kilmer in the movie The Prince of Egypt, so she is correct. God is very handsome). Some of us are able to feel God and be moved by the Holy Spirit. I really and truly believe that Annie is experiencing God in her very own special way right now, and I will never know what it’s like. Just like I’ll never know exactly what your experience with God is like, because it’s just that. Yours. I am so grateful that even though she may not be able to hear my voice or her daddy’s voice, she is able to understand and be comforted by the Lord. Her name was written before we even knew she existed, and her tiny foot that I long to kiss has made a larger footprint on this earth than I could have ever dreamed for her. I am one proud momma.

I want to conclude by thanking each of you reading this. Thank you for taking the time to get involved in our journey. I want to thank all of you who are praying for us. Your prayers mean the world to our family, and we are so humbled by the outpouring of love we have received. I also want to say to all the women who have a similar experience of having lost a baby, my heart goes out to you as well. This story is all too familiar to some, and that breaks my heart. Thank you for letting me share our story.