A crushing sense of loneliness engulfs us as we rehash our day. There is no comfort for our hearts and no encouragement to continue on the path we have chosen. I scour the internet looking for information and support. There are some great sites for grieving parents who have lost children, but I find no place for parents who are carrying a baby to term in spite of a fatal diagnosis.
We find one good book on the waiting process, but we are hungry for so much more. At the beginning, I throw myself into making arrangements for the end: a care plan for Pearl at birth, as well as how we will hand her into the arms of Jesus.
So Much Living to Do
One day I realize that I'm focusing so much on the future that I'm missing the present. Pearl is with us now. She is a part of our daily lives; part of our family. I choose to wear Pearl proudly.
And at the same time, we are profoundly sad. As we teach our 6-year-old son how to ride a bike, we cry because we know we will never experience this with Pearl. She will miss so much of life, and we grieve that loss even though she is still with us in my womb, growing and moving. But through it all, we strive to treasure each moment we have with her.
We go to the doctor every two weeks and are thankful for each peek we are able to take into her world. The ultrasound is a gift for our aching hearts, allowing us to see her one more time. We are not wishing the days away. The day of her birth will come soon enough. We try to keep an eternal perspective on our current situation.
Word spreads about our situation and, not surprisingly, we find that people do not know what to say to someone who is carrying a baby who is going to die. Our friends are now uncomfortable around us.
I want to break down the barriers and tell them to just ask me how I am doing. “Stop making excuses about why you haven't called me. Don't be afraid to cry with me. Pearl is not dead; she is very much alive right now.
“Don't treat me like I am walking around with a corpse in my womb. Celebrate her life with us. Honor her. Smile at my ever-expanding waistline, and don't run away from me.
“Don't ignore what is going on with us, and don't give me spiritual platitudes. Just say you are thinking of me and ask what you can do for us.”
We long for emotional support for our hearts and minds.