Arya’s Story

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May is Anencephaly Awareness month. At Sufficient Grace Ministries, we wanted to share a couple stories of perinatal hospice families who have given birth to precious babies with this life-limiting condition. Comfort Doula, Kelly Gerken and Remembrance Photographer, Brittany Yankowski had the honor of walking with Brittany Lacourse and her family through their time waiting to meet her sweet daughter, Arya. They were able to help with birth planning, attending meetings with Brittany, providing support and encouragement along the journey, creating lasting and tangible memories of her time with Arya, and capturing some of the images of their time together. SGM continues to support and encourage Brittany and her family as they navigate life with their baby girl in heaven. We are inspired by Brittany’s courage to choose a lifetime filled with love for her baby girl, and by the amazing family and friends who walked alongside her on this beautifully broken path.

 

From the heart of Brittany (Arya’s Mommy):

On November 12,2017 my baby girl , Arya, was born silently into the world. She was absolutely perfect. Arya suffered from a fatal defect called anencephaly. When her condition was confirmed at 13 weeks, we were told termination was our best option. In the words of the doctor we saw, Arya would be gruesome to look at and she was incompatible with life. At that time I was working for a life affirming organization and had never thought in a million years I would be told to terminate my child, but here I was in that place. In that appointment it was drilled into my head all of the reasons I should end my pregnancy and not give her the chance to live.

I stood my ground and said no! My choice is life. I won’t lie. At that point I started to feel alone in my decision and wondered if I was doing the right thing because of all the pressure I had to abort. Thankfully I had my amazing coworkers, family, and an amazing ministry, Sufficient Grace, who stood behind me and helped to celebrate my girl.

When I first told my son about his sister’s condition, he was so upset. But, eventually he understood and had peace in knowing she would be with the Lord. Throughout my pregnancy, Arya continued to fight and was so strong. I would lay in bed and tell her how much she was loved and wanted. I would pray over her and just ask God to please allow me more time with my little one. Then at 27 weeks I stopped feeling her move.

I went to the hospital just to make sure she was okay but they told me she no longer had a heartbeat. I was devastated but thankful God had given me that long to bond with her. Her delivery was so peaceful and I got to spend three days in the hospital with her thanks to the Cuddle Cot that was borrowed from Sufficient Grace Ministries. Thanks to them I was able to make memories with my daughter as well as be a mama to her in the ways I knew how even though she had gone to be with God. Had I not had the support that I did through her journey I don’t know that I would be in the same place I am today. They helped get me to a peaceful and hopeful state despite my hurt and heartache. I don’t regret my decision for life. To show my daughter unconditional love and to show my son that all life is important no matter the diagnosis. I hope Arya’s story can help someone else facing this heartbreaking time to know they aren’t alone and that choosing life leaves no regret.

 

Creating precious memories with your baby, pouring a lifetime of love into moments, can be a healing process both in the moments and for years to come. Every baby is worthy of celebration. Brittany and her friends and family made the most of the time they were given, filling the time with prayer, capturing prints and images, and so much love.

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For support and/or resources if you are carrying a baby with a life-limiting condition, please visit the SGM Perinatal Hospice Link.

For more information about anencephaly, please visit: Anencephaly Info.  

The Miracle Before Christmas: Gianna’s Gift

I spoke with Heather just a day before we would meet. Neither of us knew the extent of the miracles waiting for us as we chatted about the upcoming delivery of her sweet baby, diagnosed with Trisomy 18 earlier in the pregnancy. We weren’t sure whether she was having a boy or girl or how long she and her family would have to spend with their little one before saying goodbye. Together, we planned the best we could in our brief conversation. I packed a bag of items that would be fitting for either a boy or girl and an overnight bag for myself in case I needed to stay in Columbus for longer than expected. (I actually spent the next few days in Columbus supporting families, but that is for another post!)

Heather and Dan were prepared to have moments with their baby as she was not expected to live long after her birth. We asked to have both the photographer and the priest in the operating room, bending hospital protocol for these most special circumstances. Sometimes I have to fight to get birth professionals to allow the photographer in the OR, so to have a priest and photographer there was unprecedented. It was important to Heather and Dan to have their baby baptized immediately, while she was here. We were so grateful that the hospital made an exception to allow that to happen. The entire staff was very supportive of the family’s wishes and helping us to make the most of the time with their sweet baby.

It was the first time the young priest would support a family facing the loss of their baby. Father Tony didn’t look much older than my twenty-one year old son. And, although he was quite capable and comforting as he supported this family, I felt myself wanting to make sure he was ok, feeling protective and compassionate, as I knew he would be forever changed by the events that were about to unfold.

There is always an excitement when waiting to welcome a life into this world, even when that life is expected to be brief. I met the family as we waited for Heather to go into the OR, the sweet brother Luciano and sister Ava, the grandparents, the aunt, the godparents. Love filled the room, even as we waited to meet Baby H.

We gowned up and sanitized. I held my camera, positioning myself strategically in the operating room. It was my first time being allowed to photograph in the OR. I spoke a silent prayer for the family, for Father Tony, for my own photography abilities.

Lord…please give them our best. Please give them time with this sweet baby. Please give them the grace and strength to endure what lies ahead. Please carry them.

Heather’s face was filled with the peace that surpasses all human understanding and the sufficient grace God gives…just the right measure when we need it. She shone with the joy that mothers feel as they wait to meet their babies. They had hoped and prayed just to get to this moment. It was already a miracle that their sweet baby had come this far.

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She was born, so tiny and beautiful. I snapped the pictures, as Mom and Dad glimpsed the first glances at their baby girl. After assessing her, the nurses and doctors said we needed to move quickly for the baptism as it seemed Baby Gianna had only moments. She was not breathing, but her heart was beating slowly. I grabbed the Baptism bib Heather and Dan brought. Father Tony held the holy water in his shaking hands. Dan, father to baby Gianna, released the emotion he had carried for months as his knees buckled a bit. I put down my camera to hold him up for a moment as the tears fell. Dan found his voice to speak his daughter’s name with authority after a moment. Father Tony poured the water over her head, and as he said the familiar words, “I baptize you in the name of the Father, and of the Son, and of the Holy Spirit” …the next miracle happened. Baby Gianna coughed and sputtered and breathed, and her heartbeat rose to a normal rate. Her skin turned a healthy shade of pink. We all stood in awe: medical staff, support staff, and family. Godparents and grandparents listened over a special system the hospital uses to communicate.

Dan carried Gianna down the hall to meet her brother and sister and the rest of the family. Tears fell. Love filled the room.

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Heather was finally able to hold her sweet baby girl, and she glowed with the peace and love that oozes from a mama-heart. They hoped for moments with their baby. God gave them days to love on their girl. She was passed around the room. Moments were captured. Her first moments.

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Her sister and brother were able to give her a bath.

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The family soaked in the miracle of those moments as time stood still. A lifetime of love filled the room to welcome baby Gianna. With her life came the gift of time.

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Gianna breathed on her own and was able to eat, such a mighty little warrior!

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Just days after her birth, she was able to go home with her family. She passed away in her home, feeling nothing but the love that filled the room…the love that will be carried in the hearts of her beautiful family all the days of her life. It was an honor to meet Gianna and her amazing, brave family.

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Here are their words about the experience:

From mom, Heather:
Trying to find the words to express my gratitude to Kelly & SGM…
From the moment we first spoke the phone I knew we were meant to meet. If I was blessed enough to meet my baby…I wanted to have family pictures. I waited until the day before my c-section scheduled to reach out. It’s hard to find the words to explain to someone that I’m not able to keep this baby with me. Only days before would I even allow myself to pick out a few items. I was so scared to buy any items and never be able to even use them. Due to other circumstances of
my pregnancy I found out very early in my pregnancy my unborn baby would be diagnosed with Trisomy 18. I’ve had so many people tell me how strong I am. I’ve only been able to get through this experience with faith. Every day of my pregnancy was a blessing. Gianna was a special gift. Sharing her story makes me smile & so happy. My heart aches & I miss Giana dearly. Every bit of heartbreak and pain was worth it. I would carry her all over again just to have those precious hours. I had hoped and prayed so much that I had a misdiagnosis, to then praying that I could have even a few minutes. I find it so comforting to share.
Kelly not only captured this by photographs but witnessed first hand the most personal raw & loving moments of Gianna’s birth & Baptism. Gianna had a purpose. I adore that she & Father Tony were able to witness such a miracle with Dan & me in the operating room. She also made sure to include older siblings Ava & Luciano. The photos & sharing her story & keeping her memory alive. Dan & I are blessed to have such an amazing community of support from our parish & friends & family. We hope this helps others by sharing Gianna’s story & to share SGM.

From dad, Dan:

My Dear Gianna,

We were so extremely lucky to have you in our life for 47 hours. When we were told of your Trisomy 18 we knew from the beginning you were a gift. It was only fitting that you were named after a saint. You taught me so much about strength and fight that I will carry for the rest of my life. I asked you to fight so we could have time and you responded to allow everyone to experience your love. You brought so much joy to your mother, brother, sister and myself. I can’t believe the impact you have had on so many lives in a short amount of time. I am so proud to be your father and will think about you everyday. It is hard to let you go but know you have a purpose. I know you will watch over us and protect us. We will miss you dearly but thank you for teaching our family about faith, strength, love and compassion.

Love you
Dad

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To learn more about the support offered by Sufficient Grace Ministries, please visit www.sufficientgraceministries.org.

The Love that Lives On….Because Every Life Matters

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We do not write every story, and try to guard the privacy of the families we serve. Some are more open to sharing their journeys than others. And, that’s completely understandable. Their stories are sacred and personal. SGM has walked with about 25 families at various hospitals throughout Ohio in the last few months. It is an honor and a privilege to meet and care for each precious life…to come alongside every family. But, I want to share about a recent experience that touched our hearts deeply.

I met Ahna at a restaurant just that morning to iron out her perinatal hospice birth plan for their baby, due to be born in about a month. Gavreel had a life-limiting condition known as anencephaly. The connections that brought us together were no accident. And, I marveled after our meeting at the mystery of our God and the ways He works.

Some of you may know that SGM has been blessed to have Bethany Conkel on our team as an SGM Doula and Remembrance Photographer. Bethany also is the the founder of Purposeful Gift, a non-profit organization founded to help connect and advocate for families carrying a baby with a life-limiting diagnosis who are seeking the option of neonatal organ donation. She connects families with the resources, researchers, and available organ recovery surgical teams through organizations like IIAM and Life Connections. Some families may find comfort in having the option to donate their baby’s organs to help save another life.

This family had chosen organ donation. And, it was my first time supporting a perinatal hospice family as a doula through SGM who had chosen donation. I have been so deeply touched by the experience and by the incredible family we walked with over the past few days including those who came together to ensure that we were able to give them the most we could during their son’s brief and amazing life.

We didn’t expect to get the call late on the night of the same day as our birth plan meeting. But babies come on their own schedule! When I entered the room, mother was about to deliver as her loving family surrounded her bed, holding her hand, stroking her hair. We talked through the contractions and pushing. And he was born not long after my arrival. I communicated with the incredible team made up of Bethany and the organ recovery surgeons from Life Connections as they traveled in the wee hours of the night/morning over 3 hours to perform the surgery…to honor this child’s precious life…to give this family one of their wishes for their son’s legacy…and to help save the next baby’s life…because he lived. Because this child lived…someone else’s life may be impacted. Because every life impacts this earth…no matter how tiny. No matter how brief.

He was passed around and loved on, held for his whole life. Knowing nothing but love during the hour he lived. I stood in awe of the love that filled the room. The familiar glory of comfort and peace while standing in the place where heaven meets earth. We captured the memories and created mementos. When the recovery team arrived and went over details and procedures, I stood in awe again of my beautiful friend, Bethany and the way God is using her to make such a difference in so many lives through her organization. I love the way he has brought us all together to give families all that we can, connecting them with resources.

I wondered about the surgeons who would drop everything in their lives to drive hours in the middle of the night. That act alone gave me a window into their hearts. When I met them, I saw the care and passion in their eyes for what they do. I saw first hand how gentle and loving they were, how much respect they had for this precious boy. And, I walked away thinking….they share the passion we carry in our own hearts at SGM. They’re our kind of people. People who would leave their lives in the wee hours to give what they have to give to a family saying goodbye to their baby. Mutual respect all around. Which in itself is a miracle born from those few days…because so few people understand the willingness to allow your own world to stop as you step into someone else’s story for awhile…in order to walk with them. But, they do. And, they did.

In addition to partnering with Purposeful Gift for this family, we had the privilege of using the Cuddle Cot, donated to SGM by Owen’s Gift (founded by another wonderful family we were honored to serve). The Cuddle Cot helped them keep their son in the room with them during their entire hospital stay.

I can’t say how humbled and grateful I am to have known this tiny hero. And, to have known his beautiful, love-filled family. Not to mention how my heart melts to think of all who came together to honor their wishes. It is always a struggle when there aren’t adequate words to say what’s rattling around in my heart. But, when such stark, take-your-breath-away beauty rises from the broken, there is nothing like it this side of heaven. No word worthy to describe it. It changes you, becomes part of you, humbles you, astounds you, touches you so deeply…so profoundly…that you carry it with you always.

Sometimes the raw beauty in the midst of brokenness is astounding. The love that can fill a room…love for a little life. Love for one another. The impact a tiny life can have on the entire world…on one soul…on a thousand souls. Because every life really does matter. My heart cannot even describe or contain the overwhelming beauty of what happens in the sacred place where heaven meets earth. Or the humbling privilege that I’m allowed to walk there bearing witness to the treasure of such love wrapped in the tiniest miracles.

How blessed am I among women to walk in such sacred places.

For more information about support offered by Sufficient Grace Ministries for families facing a life-limiting diagnosis, please click here.

To request support materials, please visit our Dreams of You Shop for Parents.

What I Wish People Understood About Perinatal Hospice

Support is available for bereaved parents. To learn more about the items and support Sufficient Grace Ministries offers for youth and siblings touched by grief, please click here: SGM Youth Service Projects and Sibling Grief Support.

We hear the words hospice, and often think, “the end” or “giving up”. The opposite is actually true. Hospice can be empowering and freeing, bringing comfort and even hope. It isn’t just about the end of life on this earth. It is about living every last moment, the way you choose.

In the case of perinatal hospice, it is even harder to convey a message of hope. Families facing a life-limiting diagnosis for their sweet baby, a baby who has not yet even taken his first breath on planet earth, can spark a parent to feel fiercely protective. Protective of the right to hope. To believe in miracles and the preciousness of human life. Everyone around the parent may feel the same protective instinct. How…how, when that sweet baby is still kicking happily in her mother’s womb, can I speak to her about finding support from those who walk with families through loss?

“I will tell her later…when she’s ready to hear it.”

It is so hard for a parent to know they would want this type of support, and even harder to understand, as a friend, that it would be essential to be aware of resources before the time of the baby’s birth. A parent is not prepared for the words “incompatible with life”. Most people do not know what they would do if they heard those words about their baby, and few would ever spend time thinking about or researching such a painful topic. So, little is known about resources to help in these circumstances, until after a loss occurs. I cannot count the number of families who have conveyed to us, after losing their baby…

“I didn’t know you were here. I so wish I knew that I could’ve had support, or beautiful photography, or an outfit for my baby.”

Another parent: “We needed to know the resources and birth plan information 3 months ago…not handed to us in a folder with some pamphlets, and little to no explanation at the time of our baby’s death.”

“I called the hospital perinatal hospice program and they never returned my call.”

“At first I thought…no way…I don’t want some stranger coming in here. Then you walked in, and you were gentle and understood. Now I want every parent to know, they want this. They may not know it, but they want this support. People need to know.”

“I didn’t know I could…”

“If only…”

Those are the stories that tear our hearts out. We can’t bring someone’s baby back. We can’t make this canyon of grief and sorrow better. We can’t fix this kind of pain, and we would never try. But, we can alleviate many regrets. We can do something about “if only”.

Perinatal hospice is not meant to take away hope. We will hope with you, pray with you as you wait to meet your sweet baby. We will enter in and walk with you, helping you to embrace the gift of time you’re being given with this precious life. We will help you plan for your time with your baby. Your story. Your way. If your baby defies the odds and the life limiting diagnosis, we will rejoice with you, and continue to help capture precious moments of the miracle of your sweet child’s life. And, if you have to say goodbye to your child, we will be there too. In the moments, making sure you have what you need, and the time is spent the way you want to spend it. Honoring this tiny life. Filling every sweet moment with love.

And, the support doesn’t end there. We can walk with you to plan a remembrance ceremony, funeral, or other end of life celebrations, help capture that time, and provide support in the coming days, weeks, months, and years.

Together, we at Sufficient Grace Ministries are working to change the way hospitals and caregivers deliver this difficult news to parents, and the kinds of support offered to those walking through the wilderness of a life limiting diagnosis, and later through grief. No parent should have to walk here alone. We are here to walk with you.

Through…

Hospital education to train on the benefits of perinatal hospice birth and bereavement services, compassionate care for bereaved parents, and understanding the grieving parent’s perspective. We are also equipping many hospitals with SGM Perinatal Hospice Birth and Bereavement Services and Dreams of You support/memory-making items. Many hospital training programs offer a “checklist” of things to do. Give family mementos…check. Get baby’s footprints…check. Hand them a folder with some support group information…check. Our program is not a checklist. We are here to enter in and walk alongside you awhile, offering a listening ear from someone who understands, and resources that may be difficult to find on your own when you’re overwhelmed and don’t know where to look.

Dreams of You Memory Books, Comfort Bears, clothing, mementos, and Walking With You support resources sent to parents worldwide.

Online, telephone, and in a growing number of locations, in person support from Stillbirthday certified birth and bereavement doulas.

Remembrance photography in a growing number of locations.

This video shares just some of the services provided through Sufficient Grace Ministries:
Dreams of You Song by Tim Gerken III (Kelly’s son) and Lyrics by Kelly Gerken

A Gift of Time Book Tour

For those new to this site, my name is Kelly Gerken, and I am the founder of Sufficient Grace Ministries for Women and Families. You can learn more about our non-profit ministry which offers comfort and hope to hundreds of families each year all over the United States and beyond by clicking the link in this post or the Home Tab at the top of the page. This ministry was born from our own family’s journey through the loss of three of our five children: twin daughters, Faith and Grace, who suffered from twin to twin transfusion syndrome and a son, Thomas, who was diagnosed with Potter’s Syndrome. You can read more about our family’s story of hope and healing by clicking here.

I mentioned in a previous post that part of our story was shared in a recently published book co-authored by Amy Kuebelbeck and Deborah Davis entitled, A Gift of Time. This book is a wonderful resource for families who are facing a fatal pregnancy diagnosis and for those who walk with them through this journey. Kathleen Benson is hosting a question/answer virtual book tour today, so I joined in to share some thoughts along with a few of the other contributors.

I answered some of the other questions, especially my initial reaction/feelings after reading the book in a previous post. Click here to read those thoughts.

And, now I’ll try to answer a few other questions on the tour:

· As a bereaved parent, how have you continued to celebrate the memory of your deceased infant, and what resources did you utilize to help you cope with your loss?

During a past session of Walking With You (our online bereavement support site), I shared more details about how we remember our babies. In the beginning, we had little birthday parties with cupcakes or cookies with a close friend. We don’t always make a big deal out of those days now, many years later. But, we never forget. Hanging special ornaments on the tree at Christmas, donating bibles in their names, purchasing presents to give to needy children at Christmas through Operation Christmas child…these are all different things we have done. One of the most significant ways that their lives have touched the lives of others is the legacy they have through Sufficient Grace Ministries. Every Dreams of You Memory Book that is given to a grieving family, every Comfort Bear that fills a pair of empty arms…every one of the items we give says that Faith, Grace, and Thomas were here. Their lives mattered. Because they lived, because God comforted us in our grief, we can reach out to offer comfort and hope to others.

· For most of the contributors to A Gift of Time, many years have now come and gone since the deaths of our babies. Looking back on your pregnancy and experience since the birth and death of your child(ren) has your perspective changed at all over the years? Do you have any regrets or think that you would do anything differently, “knowing what you know now?”

It has been fourteen years since Faith and Grace were born still, and twelve years since we spent six precious hours with our Thomas before saying goodbye. When we carried Thomas, after learning of his fatal diagnosis, we didn’t know that we were making some brave choice. We were just trying to parent our son the best we could, and do what we felt was right in the eyes of the Lord. We didn’t know the significance of that choice. Looking back, I realize that there was so little support because most of the time families in our situation chose to terminate. We were sort of like pioneers in many ways. But, we didn’t know that. We were just trying to survive it…praying for a miracle, while planning a funeral.

Regrets…

Yes, I have many. I regret not taking on the perspective that we could take Thomas to different places while in my womb, making memories…soaking in that gift of time for all it was worth. I sang to him, prayed for him, talked with him. I did cherish the time. But there was so much more I could have done. I could have written him letters. I could have had beautiful maternity pictures taken. I could have planned to have our oldest son at the hospital to share that precious time, along with other family members. We could have chosen comfort care…and would have, if we would have known there was such a thing. I could have written a birth plan, if I would have known there was such a thing. I could have given him a bath like I wanted, instead of allowing the nurse to tell me that would just be “too hard”. I wish I could have had beautiful photographs of all three of our babies and our family like parents have today through organizations like Now I Lay Me Down to Sleep. I wish I had pictures of me kissing his face. I wish I would have unwrapped him and taken pictures of his feet and hands.

There are more. I could fill books with my regrets. But, I did the best I could. We did the best we could. We loved our children…all of them. And, one thing we do not regret. We do not regret giving them every opportunity for life. We view our time with them as the most precious of gifts. For that we are grateful…and for the promise that our regrets will one day be wiped away along with our tears. All will be right in heaven, where they wait, complete and safe.

· Whether or not you believe that “everything happens for a reason,” what good have you found that has come from your experience parenting a baby that did not live long before or after their birth?

I could fill books with the good that has been born from this journey, as well. We believe and have witnessed, that God makes beauty from ashes. We would have never chosen this path, but it is the path we have walked. And, there have been beautiful gifts in our lives because Faith, Grace, and Thomas lived. We were broken, more than once, in our sorrow. We learned to cling to God in such a profound and deep way…a way that can only be learned through being so broken, so desperate, so in need of His strength. We learned what it feels like to experience His sufficient grace. Our marriage went through incredible struggles, and seemed that it would barely survive at one point. And, yet…He healed not only our broken hearts, but our marriage has been restored to a place I never imagined possible. I mentioned before the work of  Sufficient Grace Ministries. That is a beautiful picture of the good being born from so much sorrow. And, we stand in awe of the privilege of being able to watch this story unfold.

Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles so that we can comfort those in any trouble with the comfort that we ourselves have received from God. ~ 2 Corinthians 1:3-4



Because we were comforted by a loving God, we want to reach out and offer comfort to others walking this path.
This verse has also held true for us:


Those who sow in tears will reap with songs of joy.
Psalm 126:5

Thanks so much for stopping by on the tour. You can meet some of the other contributors to A Gift of Time by visiting Kathleen’s site, linked below.
To continue to the next leg of this book tour, please visit the main list at Four of a Kind.




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.