This week for Walking with You we are sharing our experience after we heard the news that changed our lives. (You can read my 1st WWY post about it here.)
If you are a mother who has heard the words incompatible with life, what happened next for you? Share about the waiting if your journey continued. How did you walk that path? What were some of your feelings? What did you do to form lasting memories? What were your struggles? Things you found comfort in?
We received our diagnosis on December 15, 2008. We left for our family vacation to Hawaii on December 19th, one we had planned for 3 years. The days in between were some of the most difficult I have faced. I cried a lot and I looked up as much information that I could about anencephaly-facts, articles, stories from other parents, and even pictures (which I would not recommend). My mom came down for those days and stayed with us to help out with my daughter. I would listen to several songs over and over and just cry. Why must this be my path? I trusted God and I had some level of acceptance about it but it still felt so unfair. I didn’t want my daughter to die.
I think one of the best things that happened for us was going on vacation. It was so good to get away and just leave reality behind. We had decided to not worry about what we would have to face but just enjoy our time in Hawaii. Everything could wait until we got back.
We did have an appointment with a Maternal Fetal Medicine specialist before we left on our trip. It was sort of a second opinion kind of thing even though I knew it wouldn’t tell us anything different. The appointment was a waste of time. The genetic counselor was joke (I knew more about anencephaly in my few days of research that she seemed to know!) and the dr only really gave termination as an option. My decision was made after the initial diagnosis and I was carrying my daughter to term no matter what anyone said, even my husband.
When we got back from our vacation I decided to start making prearrangements for the funeral. I was able to find a funeral home that was so very nice to us. We met with them several times before Carleigh was born to finalize everything. Our pastor went with us for support (God bless him). I think the hardest part out of all the arrangements was opening up the catalog to look at baby caskets. It was the only time I cried during the planning. Caskets that small shouldn’t have to exist and just imagining my daughter in one of them was too much.
I also decided to start a blog for several reasons. I’m so thankful that I did. It has not only helped me in many ways but other people too. This blog will always remain as a testament to my daughter’s life. She lived, if only inside of me, and her life will always matter even when I am gone. Her story will be here for other families going through the same or a similar path.
I didn’t pray or read the Bible very much while I carried Carleigh. Not because I didn’t have faith or was angry, but because I felt such closeness with God that it didn’t seem necessary. It sounds weird to put it like that. I learned quickly that I had no control over the fate of my daughter. Her life was in His hands and I had to trust in that. I am a planner by nature so not knowing what was ahead of us could have been very frustrating for me but God gave me the peace even among the hurt to enjoy my daughter. I can’t put into words how thankful I am for that.
When we got Carleigh’s diagnosis I was 22 weeks pregnant. I made the decision to induce at 37 weeks. I knew for 15 weeks that my daughter would die. Would I take any of it back? Certainly not. I wish that I would have done more. Taken more photos. Created more memories. You only get one chance. I am thankful for the things I did do while she was with me.
We got a 3D/4D ultrasound, which was so amazing. I treasure the video from this session very much as it is the only footage I have of my daughter alive. I remember smiling through the entire session. I was so happy to see her move and she had such chubby cheeks!
We got maternity photos through NILMDTS. I had never had them done before but I knew it was important to get them. After I got them I wish I had done maternity photos with my first daughter because those photos we got when I was pregnant with Carleigh are so special and capture a very special time in our lives, one of both joy and sorrow.
Our pastor’s wife threw us a prayer shower. We had food and cake (so yummy!) and we had guests bring bottles of change to donate to our local women’s center in honor of Carleigh. A few songs were shared and scriptures spoken. Prayers were prayed over us and our pastor anointed me. The prayers of so many on this journey meant the world to us and we felt them!
I had a belly casting party with a few high school friends and they helped me create belly cast, which is such a wonderful keepsake. I never imagined doing one before but a friend gifted me with a casting kit. I also never thought it would come to mean as much as it does to me. It took me over 2 years to finally get it painted. My friend Stephanie at Beyond Words Designs painted it for me and did such a beautiful job, even better than I imagined. Carleigh’s prints are even positioned on the inside of the cast where she laid in my belly.
I truly believe God carried us the entire time from the moment we got the diagnosis to the time of her birth and even beyond. I can’t explain how we handled things so well and had so much joy when we should have been so sad. Of course, there were times of tears and sadness but I’m so glad those moments didn’t overshadow the time we had left with her. I never wanted my pregnancy with her to be tainted with darkness but with light. She was and continues to be a light in our lives. A blessing, a gift from God that I will always be thankful for. I have said it before but I would rather have known her this way than to have never known her at all. I can’t imagine my life without her in it.