Today I have the story of Olivia, whose mommy Cynthia was the first mom I talked to once finding out our diagnosis. (Thank you to those of you that connected us!) Cynthia has shown me so many things about living with the grief and heartache in the long run. Her and her husband went on to have three more beautiful girls, making five here on Earth and Olivia in Heaven. I hope you are as touched by her story as I have been.
Olivia's sisters, before her youngest sister Emmie was born, with their Molly Bear to represent Olivia.
How was your baby diagnosed? How far along were you, did you get a second opinion?
-I went in for a routine ultrasound at 12 weeks. The doctor's heart rate Doppler was broken so we just needed to confirm a heartbeat. The ultrasound was absolutely perfect. She was moving all over the place, sucked her thumb and measured right on track. As soon as it was time to scan the head, the mood of the room changed. I knew something was wrong but I had no idea how much our lives were about to change. I had a followup appointment a week later with a specialist but we already knew that the initial diagnosis was correct.
What was your reaction to the diagnosis?
-When we were first told, I was in shock and devastated. I had never heard of anencephaly and had no idea what we were supposed to do. Our doctor told us that we could continue the pregnancy and see and hold our baby. I thought he was insane. I couldn't imagine wanting to carry a baby, knowing that if we made it through birth, she would die in my arms. By the next morning, my mind had changed. I knew I was going to continue the pregnancy, to have as much time with her as we could get.
How did your other children react?
-Hannah and Makayla were 2 & 3 at the time. I was surprised at how much they understood at such a young age. They were very sad and confused. They couldn't understand why their friends brothers and sisters got to come home and their sister wouldn't or why some of their friends moms had 2 babies come home and their sister was going to heaven. Olivia's life gave us the opportunity to share with them about the beauty of heaven and the hope of seeing her again. In the end, they were such proud big sisters. They would tell everyone about their sister in heaven, even cashiers that we had never met. Kids are so awesome, they have no concerns about making things awkward, they just share their joy.
Why did you choose to carry to term?
-Even though I couldn't imagine continuing the pregnancy initially, once the shock wore off, I couldn't imagine terminating. We wanted this baby, we had prayed for her and I just wanted time with her no matter how much or little we would be given. Her life was just as important to us as our other girls, if one of them had a terminal illness we wouldn't end their life the next day. To me, Olivia was not different, every minute of her life was worth living and it was not up to me to change God's plan for her life.
What was your favorite part of being pregnant?
-She moved all the time, it's like she was constantly reminding me that she was still here. And food! I craved meals late at night so we almost always had 2 dinners. Pretty much any food I craved, I went for it. It was my way of letting her have the foods that she would never grow up to taste.
When was your baby born?
-I went into premature labor at 34 weeks, since we had a fatal diagnosis, there was no intervention to stop labor. I had a vaginal birth and she lived for 58 minutes.
Favorite part of meeting your baby?
-Finally getting to see and hold her. In an instant, all of the worries and fears were replaced with love, she was absolutely perfect and beautiful. We couldn't kiss her and tell her we loved her enough. One of my favorite things to do with my babies is to take naps with them, I was blessed with the opportunity to take a nap with her in my arms. It seems like such a small thing but it was a chance to have a "normal" memory with her that I have with all of our girls.
Favorite keepsake?
-Pictures and her hand/footprints. Sometimes this whole journey seems unreal, having those pieces of her helps bring me back to those moments that I never want to forget.
Organ Donation?
-We had looked into organ donation but could not find much support for infant donations at the time. She would have had to be born at a certain weight and she was too small. I wish I had known more about tissue donation at the time. I think the awareness has dramatically increased over that last 7 years and more information is available to parents facing these situations.
How do you incorporate your baby into your family's current lives?
-We talk about her, on her birthday we celebrate and do a balloon release, at Christmastime we have a stocking for her. Her life is intertwined in way that isn't always obvious to others but she is forever a part of us and she will continue to have a place in our family. We have done fundraisers for Molly Bears and for a pregnancy outreach on her birthday, being able to focus on helping others brings purpose to her life.
Would you change anything? Do you have regrets?
-I would have been prepared early for the possibility of going into labor early. I was not prepared at all and did not expect to be in labor when I went to the hospital at 34 weeks. I would have also taken more pictures. Our photographer didn't answer when we went to the hospital. I am thankful for the few we had gotten but always wish we had more. My biggest regret is that our older girls did not have a chance to meet her. She was born in the middle of the night, waking up a 3 & 4 year old at 1:00 in the morning worried us. We didn't know how much time we would have with her so we made the best decision in the moment. In hindsight, I wish we would have had them brought up but I remind myself that it was not a decision made lightly. Having her prematurely changed so many of my plans that I thought would have worked out.
How do you want your baby to be remembered?
-That she was a loved and wanted part of our family. Her life was short but she was surrounded with unconditional love.
Anything else you want people to know?
-The journey of carrying to term is the most difficult but most beautiful experience of my life. When you allow God to carry you, you are capable of so much more than you ever believed possible. I thought my pregnancy would have been the hardest part of this journey but it was just the beginning. Learning how to live every single day without your child in it is the hardest thing I have ever had to do. Through it all, there is a lot of sadness but if you can try to find purpose in it, you can find joy in the midst of the pain. In the end, I would do it all over just to have those moments with Olivia again.
If you are going through this, you will feel every range of emotion. Allow yourself to feel, even the feelings that feel so ugly at the time, the feelings will not always be so raw.
If you love someone who is going through this or that has, don't skip over the hard stuff. We never forget our babies, a simple "thinking of you" goes long way. Birthdays, diagnosis day and milestones will ALWAYS bring up a range of emotions. Whether is been 3 weeks or 50 years, hearing our baby's name spoken is a reminder that we are not alone in this.
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