A Gift of Time and Perinatal Hospice

I wrote a post on the Sufficient Grace blog about the new book by Amy Kuebelbeck and Deborah Davis called A Gift of Time. There is also a giveaway and more information about perinatal hospice support for families facing a fatal or poor pregnancy diagnosis. Please click here to read about this wonderful book I had the privilege of contributing our family's story to, and read more about the amazing work of perinatal hospice.

A Gift of Time ~ Perinatal Hospice (Giveaway)

Giveaway Closed...Winners Announced

Several years ago, after I was featured as the keynote speaker at the Grand Rounds at Good Samaritan Hospital in Cincinnati, Ohio, my maternal fetal medicine specialist, Dr. Marcotte, recommended that I take part in a project led by Amy Kuebelbeck and Deborah Davis. After reading Amy's book, Waiting With Gabriel, I was intrigued by the book Amy and Deborah were writing. Their mission was to collect stories from families who had chosen to continue a pregnancy after receiving a fatal diagnosis. Their goal was to change the way some may think about continuing these pregnancies. Many in the medical field encourage mothers to terminate these pregnancies, feeling that is the best way to deal with the "situation". Some feel that it is a waste of time, money, and medical resources to continue when the baby's life is expected to be brief. Some, mistakenly feel that it will lessen the burden of the parents' grief if they have less time to bond with the child fated to die.

Families who are given a fatal diagnosis are not often told of the option to continue a pregnancy. They are in the minority, as most people still choose to terminate. Often, doctors do not even use words like terminate, or abortion. Many are either not aware that there is support for these families, or choose not to share this information.

 Hearing that your baby is doomed to die is nothing short of devastating. At first, many looking to their doctors and other experts for advice may agree that it would be easier to just end the pregnancy quickly, in a desire to escape what is to come. The truth many have found, however, is that there is no escape. Grief and sorrow for your baby's life that was lost will come regardless of when and how your baby's life ends. But, those who chose to terminate have an added facet of guilt and regret.

As the authors wrote, "Your heart is going to break either way; why not embrace the opportunity to fill your heart first?"

Perinatal hospice offers a different option. The option of life...the philosophy that every life has value, no matter how brief. It isn't about dying. It's about living, and cherishing the gift of time we are given with those we love. A Gift of Time challenges us to look at these pregnancies in a different light. Instead of feeling hopelessness that our baby is doomed to die, they offer hope that we can make the most of the gift of time we are given with this precious life. They offer support for families throughout pregnancy, through delivery, and beyond...for the duration of the baby's life. They offer compassion and comfort. They offer wisdom from those who have walked this path, those who view death as a part of life..a time that is sacred, precious, and should be done with dignity and respect. While perinatal hospice is not an exclusively Christian organization, it is very life-affirming and offers a perspective I wish would have existed when my family walked this path fourteen years ago and again twelve years ago.

So, I filled out the questionnaire they provided, sharing our journey with sweet Thomas...sharing how we agonized over the choice presented to us...how we chose life for our son...how we waiting and prayed, hoped and prepared...and how we were blessed beyond words at the precious gift of time we received with our sweet boy and the grace waiting for us at the end of our journey. I didn't walk this path perfectly. There were moments of doubt, fear, and weakness. But, inevitably, it was God's grace that covered my weakness and an abiding faith in Him that carried us through that time and have led us to this time.

The book finally arrived last week, after years of Amy and Deborah poring over story after story...weaving their own research and wisdom from walking this path throughout the book. I anxiously opened my copy and flipped through at first to find all of the times I was quoted. My words were marked with Kelly G. in the book, so I could pick them out quickly.

For a few moments, I'll admit, I struggled as I always do when I read my words about my children quoted by someone else. They are words from such a sacred tender place in my heart that I often feel quite protective and guarded. I consider my children such a precious gift, meant to honor God, which is the deepest desire of my heart. My Jesus and my children....both sacred to me. I'm often concerned that my words and thoughts are shared perfectly so as not to mislead another. It is difficult to see only pieces of what was said...absent from the rest of the story. Pieces that only answer part of the question. For instance, the parts where I shared my struggles with trusting and making choices that honored God and protected our family without seeing how God carried us through that time right after I shared the parts where I struggled.

So, I need to say here....that yes, we struggled. We didn't always walk perfectly. One father shared that he told his wife on the day of their diagnosis, "we will hold hands, trust God and sing in this storm".  I wish we had said something so beautiful to one another. I did trust God...and eventually we both learned to sing in the storm. But, Tim and I felt the darkness of devastation on the day of our diagnosis. I wanted to drown in the rain...run as far as I could from the mocking voice asking me "Where is your God now?" In that moment, I didn't have an answer. But, when I lay awake that night, I wept over my bible, desperate for an answer to that question, clinging to the Lord and singing praise to Him, promising that "Yes, Lord...even in the depths of this sorrow, I will bless you...even now". Sometimes we resisted this path instead of embracing it. There was so much we didn't know...so much that is available now that wasn't available to us. We were on our own, pioneers walking this precarious unknown path without a map.

But, know this....we never for one moment regretted our choice to carry Thomas....to trust the Lord with his life. I looked to the Lord during every moment of weakness and doubt and He sustained me. And, in the end...when we met our sweet Thomas and spent those precious hours with him, it was Jesus Himself who met us there and filled me with joy and peace. It was one of the greatest gifts of my life. And, I wouldn't trade the gifts of Thomas' life or the lives of Faith and Grace for anything. Because of them, we learned about believing without seeing...the beauty that rises from the ashes...the grace that is sufficient to carry us no matter what we face.

After my initial struggle with seeing our story quoted in pieces, I decided to embrace what I said. After all, my words and thoughts were true. There were imperfect moments. Moments covered in grace. I began to read the book from beginning to end, and I was suddenly moved beyond words by the testimony of others who had walked on this sacred ground. Mothers and fathers who put words to the thoughts in my own heart. I am humbled to be among these amazing parents who courageously and beautifully chose life for their children, against doctors' orders, against the advice of those they love, embracing the time they were given. Some had varying circumstances. Some babies' lives were quite brief, some lasted days, months, or even years. Some babies faced other complications and disabilities, and those families continue to embrace the miracle of life as they care for their special needs children each day.

Every one of these families are heroes to me. It is hard to even imagine that I am among them. I imagine that they feel the same way I do. At the time, it didn't seem like some great thing we were doing. I was just being a mom, who loved and desperately wanted to protect and care for her baby and family. I didn't ask for that choice, and when met with it, I felt ill equipped and chose to trust the Lord with the things that were bigger than me. After choosing life for our son, it seemed that the idea of choice was almost ridiculous. Of course, he was our son...how could there be any other choice? The next days, we just tried to survive the journey most of the time...trusting, waiting. Some today have the knowledge to do more...to make precious memories, to prepare for that sweet time after you meet your baby. But, we walked this path before all of that. We loved Thomas and cherished that time the best we could. And, we cherish the tangible memories and photos we were given from that time.

As one mother named Jessica says, "I'm his mother. It's not up to me to number his days. It's up to me to provide the best home I can for as long as he's here."

That's what the mothers in this book and other mothers who walked this path did as well. That's what mothers do.

A Gift of Time is a wonderful resource for parents receiving a fatal or poor diagnosis in pregnancy, those already walking the path and awaiting their baby's arrival, those who have walked this path, and those in the medical field who are caring for these families. It offers a map to guide you through these uncharted waters. It offers the comfort that you are not alone, the encouragement that you can embrace this time you are given with your child, and the hope that there will be blessings and precious gifts on this journey. There is sweetness among the bitterness.

There are heartfelt expressions from families who have actually walked this path scattered throughout this book. They share memory making ideas, heart-wrenching struggles, hope and healing they experienced, and inevitably the truth that they are forever grateful for the time they were given with their children. A Gift of Time is incredibly life affirming, and I'm so grateful that I had the privilege of sharing in this project alongside the other families who shared their experiences. Amy and Deborah did an extraordinary job weaving the stories together...giving a voice to these parents with dignity and honoring the precious lives of our babies. It is my hope and prayer that this book will find its way into the hands of those who need it most, parents and caregivers alike. I am also grateful this beautiful work was put together in a way that caregivers can hopefully form a different opinion after reading the overwhelming evidence that parents benefit from giving their babies every opportunity to live, no matter how briefly...that these lives are precious and valuable and worthy of our time.

The authors end with these words of truth, "You are your baby's parent, always. Death is not powerful enough to erase your bond or the fact that your baby lived."

(As a side note, we have served parents who through medical necessity or due to pressure from doctors, or just considering it their best option made a different choice when faced with a fatal diagnosis. I pray that in no way my words would be used to add to your pain. There is hope and healing for the guilt and regret you may feel. While it is always our position whenever possible to preserve life, there is nothing that Jesus cannot forgive and cover with His grace. You are still a parent, grieving your child. And, we will gladly offer you our love, prayers, and support. And, for those forced to induce early due to the fact that both mother and baby were dying, as in the case of a dear friend of mine, God knows that you were in an impossible position. There really was no choice, and He understands that. His grace and love covers it all.)

Sufficient Grace Ministries would like to give away two copies of this book on this post: One to any parent who is walking or has walked this path and one to a doctor, nurse, or caregiver who works with those who may encounter these decisions. You may also enter if you would like to give the book to someone in either of these categories. Please list in the comment section your intent in using this book to enter the giveaway. You can also order the book at Amazon.com or www.perinatalhospice.org. I would love to hear your thoughts on embracing the gift of time you were given if you are a parent who has walked this path. Please share your heart in the comments. Like the families in this book, your words could be a source of great encouragement to another family facing the loss of their baby.