Let me start at the beginning of our journey…
On the morning of March 22, 2006 our lives were changed forever. At our routine 20 week ultrasound we are informed that our precious baby girl, Pearl, has Alobar Holoprocencephaly with severe facial anomalies. We are so devastated by the news. We have 3 beautiful children and are so excited to be having our 4th. We do not know how are going to navigate our way through these uncharted waters.
Just few minutes later, as I lay on the table in the Perinatologist’s office, he tells us her condition is fatal and he coldly asks us, “So, what are you going to do?” I ask him if he means that we should terminate and he says, yes. I feel like he is presenting termination as the only option for us and there is nothing else presented to us. I proceed to tell him that we have been given this life and we will cherish each moment we have with her and we will not terminate. He informs me of the risks and steps out of the room for a few minuets to let us “think about our decision”.
There is no more decision to be made, we are going to honor Pearl’s life by carrying her for as long as my body will allow and let God be in control of a seemingly out of control situation. The Perinatologist then wants to make sure we know that time is not going to change the diagnosis and that there is nothing to do to make this better. I remind him that I am a labor and delivery nurse and that we are fully aware of the outcome, as hard as all that is going to be to face. Leaving that office I begin to see how people can so easily get caught up in the vortex of emotions and choose to get out of a hopeless situation and terminate.
There is no hope offered for our hearts and no encouragement to continue on the path we have chosen to take. I realize that obstetrically there is nothing they can do for this baby, but there is so much they could do for our broken hearts. At this moment, we feel so alone as nothing is offered for our broken hearts except a pat on the shoulder.
I pour over all I can find on the Internet and at the beginning none of it is good. 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 plans for the end, a care plan for Pearl when she is born and how to hand her into the arms of Jesus.
I think society pressures you into making arrangements for what is to come, because that is what we know how to do, that we forget that we still have so much living to do with Pearl. Carrying a baby with a fatal diagnosis is not a common occurrence, so there is not much support there to help you live with the baby, instead of making plans for how to die. I choose to wear Pearl proudly and she is such a part of our family. Yes, we are profoundly sad. As we teach our 6 year-old son how to ride a bike we cry not only because our heart is now riding around on a two-wheeler, but also because know we will never have the chance to teach Pearl how to ride a bike. So many things we are missing out on with her. We miss her so much, even though she is still with us in my womb, growing and moving. Our 3 children are incredible, so sensitive to when we need a hug and when we just need some downtime. We are not enjoying each day, like you would enjoy a glass of wine, but we are treasuring each moment we have with our precious Pearl.
We go to the Doctor every two weeks and are so thankful for each peek we are able to take into her world. To be offered an ultrasound is a gift for our aching hearts to get to see her one more time. We are not wishing the days away, the day of her birth will come soon enough and that brings a whole new dimension to our lives. We try to keep an eternal perspective on our current situation.
Seeing friends is hard because people appear to be so uncomfortable around us. People do not know what to say to someone who is carrying a baby that is going to die. Death is such a taboo subject, it makes people think about their own mortality.
I want to scream to my friends, “Just ask me how I am doing, and stop making excuses about why you haven’t called me. Don’t be afraid to cry with me. My precious Pearl is not dead right now, she is very much alive and 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, but don’t give me your spiritual platitudes. Just say you are thinking of me and ask what you can do for us.” We just need emotional support for our hearts and minds.
Our whole family is shaped into something different because of this journey; our hearts’ cry is that this “new” family will be more refined than ever before and more precious than ever. Our children are amazing through this process.
Our oldest son, 6 years old, says some profound things. As I sit with him one day and talk about Pearl he wants to know what she was going to look like. I think about it for a moment and realize that only the truth will suffice for this curious mind. I tell him all about her facial malformations and that even mommy and daddy are afraid of what is going to happen. I ask him how he feels about the problem with her eyes and nose. He looks at me with those beautiful green eyes and says,
“It’s ok mom, I’m not afraid. She is my baby sister and I love her. I want to see her.” I hold him as I weep. We should all have that same kind of unconditional love for those around us that appear to be so different.
Then a few weeks later he tells me that he wishes that there were two of him, he says, “I wish there could be one of me in heaven so I could be with my baby sister and one of me here so I could be with my family.” How is he able to articulate so well exactly what I am thinking?
Our four-year-old son is so precious too. He is constantly rubbing my belly talking to “Baby Pearl”. He just wants to know when she is moving and wants to make sure she knows he loves her….and then comes the shower of kisses for my belly. Our two-year-old daughter is such a light to us too.
When I am crying, which seems to be a lot lately, she looks at me and says, “You want daddy? You want lovie?” The two things that she knows always make her feel better! Even when I am crying and talking to my mom she says to me, “Stop talkin’ to mimo!” She just wants me to feel better. What precious children we have that are so in tune to all that is going on in our house. Could there be any greater gift?
We know the time with Pearl in our arms is going to be short so we do everything we can to prepare for her birth. I create a very detailed birth plan so there can be no questions as to what we want during my labor and delivery. I think for a long time about the different keepsakes I want to have at home with me. Our bag for the hospital begins to look like an aisle in Hobby Lobby! I know how precious each item will be. Each of my children has a Christmas ornament with their handprint on it and Pearl will be no different. We have plaster for hand molds, clay for hand and foot-prints, scissors for a lock of hair, cameras, and my favorite oil I use after each of my children’s first bath. There is an organization called Now I Lay Me Down To Sleep that donates their time and services for bereavement photography. The pictures we have are priceless treasures. There is not a detail overlooked.
As I approach 32 weeks the amniotic fluid begins to increase rapidly and my Dr begins to become concerned for my health. We have one therapeutic amnio to release the excessive amount of fluid in my uterus, and just 5 days later all the fluid is back and more. It is time to listen to my body and prepare to meet Pearl.
On June 5th, after a long and emotional labor, Pearl Jean Huene is born at 7:12am. She weighs 4lbs 1 oz and is 17 ½ inches long. Our time with her is unforgettable. We are able to lovingly launch her into the arms of Jesus. Not an easy thing to do, but a decision without regrets.
We have a beautiful memorial service for Pearl and are surrounded by so many who love us. The outpouring of love and support from our community is incredible. We give those around us the opportunity to be a part of her life as well as her death.
We know we need professionals around us to navigate our way through the post partum period as well as the intense period of grieving that follow Pearl’s death. I wish there was one place to go that would cover all that we thought we needed and the things that we don’t even know we need.
There are no words adequate enough to describe what a rock my husband is for me. From the moment we found out in that dim, warm ultrasound room, he has just held me close and promised me that he would walk with me each step of the way. Not even for a second did he waver in the decision to take hold of all the time we have been given with Pearl, even though he knew how painful it would be to walk this path. He continued to get up each day, love me and love our children of so well. He assured me he is not afraid of all that is to come because he knew we are not on this road alone, God walks with us. That is where his strength comes from and I am drawing from that when I am feeling weak. I loved the way he talked to his “princess” and so lovingly caressed my growing belly. He assures me I am beautiful even when I am feeling anything but that. Without this brave man at my side I would not be able to walk this journey. He loves me so well and I can only hope I am loving him well too.
We are so thankful for the gift of time with our precious Pearl and look back on this with no regrets. Hopefully someday we will be able to help someone else as they walk the painful journey of saying goodbye to their child….much too soon. In the past year our lives have been filled with such a wide range of emotions. Grief is a process that never really comes to a close….the pages continue to turn in the book of our lives.
We have recently turned to a new page in the life of our family. Lucy Jean Huene was born on June 28th, 2007 and is the picture of hope and God’s redemptive plan for our lives. The sweet baby puffs of air that blow into my face in the wee hours of the morning serve as a gentle reminder of how precious and sacred life is. There is no greater honor than being a part of God’s art studio as he crafts his masterpiece. Whether it is a piece of art to be displayed here on earth or in heaven….it is still sacred.