When our journey with Pearl here on earth was over, my doctor, who is also a personal friend, said to us, "Now I see why you did this the way you did." Also, a precious friend, who is a Labor and Delivery nurse, said to me, "I understand why you did this, and now I see why you love her so much. I will never tell anyone to terminate after a fatal diagnosis again."
Let me start at the beginning of our journey…
It is March 22, 2006 when we go in for our routine 20-week ultrasound. We are informed that our precious unborn child, Pearl, has Alobar Holoprocencephaly with severe facial anomalies. We are devastated by the news. We have three beautiful children and were thrilled to be having our 4th. We do not know how we are going to navigate our way through these uncharted waters.
As I lay on the table in the perinatologist's office, he tells us her condition is fatal and asks us what we plan to do. "Do you think we should terminate?" He says, "Yes." No other options are presented to us.
I convey to the doctor my belief that this life is a gift. We will cherish each moment we have with her. We will not terminate. He informs me of the risks, then steps out of the room for a few minutes 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. We trust that God is in control of a seemingly out of control situation. The perinatologist makes sure that we know time is not going to change the diagnosis. They can do nothing to make this better.
As a labor and delivery nurse, I am familiar with this diagnosis and know that we have a hard road ahead of us. Leaving that office I understand how people can get caught up in a vortex of emotions and choose to escape a hopeless, heartbreaking situation by terminating their pregnancy.
A crushing sense of lonliness engulf 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, and a method for handing 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 know we will never experience this with Pearl. She will miss so much of life, and we grive 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 that 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 your 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.
This journey is also reshaping our family. Our hearts' cry is that this "new" family will be more refined than ever before. Our other three children are incredible. They seem to know when we need a hug and when we just need some downtime.
As I sit with our 6-year-old son and talk about Pearl, he wants to know what she will look like. I think about it for a moment and realize that only the truth will suffice for this curious mind. I tell him about her facial malformations and about our fears for her. 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 different.
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 other two are equally as loving. The four-year-old rubs my belly, talking to "Baby Pearl." He wants to know when she is moving and to ake sure she knows he loves her. Our two-year-old daughter comes to me when I'm crying — which seems to be a lot lately — and says, "You want Daddy? You want Lovie?" — the two things that she knows always make her feel better.
"Daddy" makes me feel better, too. In fact, words cannot describe what a rock my husband is for me. He holds me when I need it and does not waver in our decision to take hold of the time we have been given with Pearl, even though he knows it is painful to walk this path. He assures me he is not afraid; that he knows that God walks with us. That is where his strength comes from and I am drawing from that when I am feeling weak.
I love the way he talks to his "princess" and so lovingly caresses my growing belly. He assures me I am beautiful even when I am feeling the opposite. 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.
The time of Pearl's birth draws near. We know our time with her in our arms is going to be short, so we do everything we can to prepare. 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 with me. Our bag for the hospital begins to look like an aisle in Hobby Lobby; however, each item is meaningful. We have plaster for hand molds, clay for hand and foot-prints, scissors for a lock of hair, cameras, and my favorite oil that I have used after each of my children's first bath. A professional photographer with the organization Now I Lay Me Down To Sleep will donate their time to take priceless bereavement photos. There is not a detail overlooked.
Preparing to Meet Pearl
I am approaching 32 weeks gestation, and the amniotic fluid increases rapidly. My doctor becomes concerned for my health. We have one therapeutic amnio to release the excessive amount of fluid in my uterus, and just five days later all the fluid is back, and more. It is time to meet Pearl.
On June 5th, after a long, emotional labor, Pearl Jean Huene is born at 7:12 am. She weighs 4 pounds, 1 ounce and is 17 ½ inches long. Our time with her is unforgettable. We are able to lovingly release her into the arms of Jesus.
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.
The Gift of Time
We are so thankful to have had that time with our daughter. We do not regret our decision. At the same time, we know we need professionals to help us navigate our way through the postpartum period, as well as the intense period of grieving that follows Pearl's death. 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 a wide range of emotions. Grief is a process that never really comes to a close.
We recently began a new chapter in the life of our family. Lucy Jean Huene was born on June 28, 2007, and is a picture of hope and God's redemptive plan for our lives. The sweet breaths that tenderly brush my face in the wee hours of the morning serve as a gentle reminder of how majestic life is. There is no greater honor than witnessing God's awsome handiwork. All life -- whether a work of art declaring God's creative mastery here on earth or a divine creation whisked straight to heaven — is sacred.
Laura Huene is married to Joshua Huene and they live with four of their children in Denver, CO. Pearl's legacy is that now Laura is reaching out to help other parents who are walking the same journey that she and her family have walked.
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