Capturing Sacred Moments ~ Colleen

At Sufficient Grace Ministries, we have the honor of walking on the sacred ground where heaven meets earth…again and again with families as they say hello and goodbye to their precious babies.

We enter in with families, walking with them awhile on that sacred ground. Empowering them with options. Helping them to tell their story.

Capturing the sacred moments…of lives that are brief.

It was a great privilege to walk with the Burkhard family as they treasured the life of their daughter, Colleen, a couple months ago. They knew their daughter’s life would be brief before she was born. They knew she had the same condition as her older brother, Colin…Meckel-Gruber Syndrome. They chose to use the time they were given to plan, to soak in precious memories, to dress their baby girl and to pour a lifetime of love in the moments they were given.

As Colleen’s father, Larry (who was originally hesitant to get the photographs), powerfully said, “I like to relive the moments in the pictures, because the pictures tell the story. Her story. I love to see the people in the background, the people who were there with us.”

The love is evident as mother and father, husband and wife…lean into one another, after a long labor, and the birth of their baby girl.

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There is nothing like a mother’s kiss…

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A family, fitting a lifetime of memories and love into the moments…

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Generations of love filling the room…

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Beautiful handmade jewelry covering tiny wrists…
Because every life matters…


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Because the most painful of goodbyes comes from a heart that loves so deeply…

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A mother’s love lives on. And, a mother’s heart continues to dream her dreams of you…until heaven’s sweetest reunion…until we meet again.

*Photos by SGM Remembrance Photographer, Kelly Gerken ~ Edited by SGM Remembrance Photographer Angela Keck
Copyright protected, property of Sufficient Grace Ministries.

Finding Purpose in the Pain

I have walked with thousands of mothers over the course of the last decade. Mothers who have said goodbye to their sweet babies, who often, after the initial shock and devastation of grief, find themselves longing to mother…to birth something beautiful from the pain, to find the purpose in her child’s life…and through her loss. After all, a mother is made for mothering. That’s what she does. When her baby is not with her, she is left with an ache that begins in her arms and settles deep into her bones.

Through that longing, beautiful organizations are sometimes born. Outreaches that make the experience different for families walking through loss…outreaches that offer hope. Support. Resources. Something beautiful to hold as you endure the missing.

Sufficient Grace Ministries is one of those organizations, but we were not born during fresh grief. It took me many years to wander through my grief wilderness. To heal some of the wounds. To learn who I was again. To feel the pain of and taste the salty tears. Because in the oozing and bubbling up, in the tearing open and pouring out, healing happens. And, it is not a fast process. I had to learn to laugh again, to know the restoration of joy and perseverance of hope planted deeply into the human spirit. We need hope like breath. I needed to see my marriage heal and grow stronger. To nurse babies and nurture my earthly children. I needed to walk awhile in my own shoes before I was ready to walk alongside someone else.

It was eight years after our losses before we started SGM. And, even then, it was not to satisfy my broken…but to reach out to help meet the needs of another grieving mother.

Everyone’s timetable may be different. But, I do get to watch the walk of many in this wilderness, through companioning others in grief. And, one thing I notice is that in our very real need to create beauty from the ruins, sometimes we skip a few steps in our own healing. In a recent article in Still Standing Magazine, I touched briefly on the desire to see purpose born from our pain and loss…purpose from the lives of our children.

“You don’t have to lead an organization or stand in front of a group to see that your baby’s life changed this world. (In fact, sometimes I think in our longing to see a purpose born from pain, mothers can rush into “creating” something. It is good to take time to heal. Joining an already existing organization may be a healthy alternative to building something new in fresh grief.) It doesn’t have to be something giant that the entire world witnesses. You just have to look deeply into the eyes staring back at you in the mirror. You are his mother. You are her mother. Even if right now the pain of that is fresh, know that someday, the gift of that truth…the gift of being their mother…will so outweigh, out value, and overshadow everything else. Don’t be afraid to let it…to embrace it.”

Unfortunately, what sometimes can happen when we create something with a desire to see that purpose, to form a legacy for our children, as the grief moves to the next phase (which often includes a desire to put some of the heavy away and learn to live again), when we enter a new season of our grief, the outreach birthed from the pain can fall away, if the purpose wasn’t built on well-prepared foundation. Some also find, once entering into the wilderness with another grieving heart, that the heaviness is too difficult a burden for shoulders already bending under the weight of fresh pain. While our children are part of the beauty born from outreaches to help others, they and our grief cannot be the sole purpose behind the ministering. We have be ready to minister to the person in front of us, to help carry her bucket. There is a season for that…a season after our own healing…when we are ready to enter in with someone else. But, it is good to take the time to allow that healing…that festering and bubbling up pain, without covering it with a mask…that leads eventually to a stronger foundation, where we’re free to live again. And, ready to tiptoe back into the ocean of grief without drowning ourselves. We have to learn how to swim in this sea for awhile, before we’re ready to help someone else to shore.

If you are feeling the desire, the very REAL longing to birth beauty and healing from your child’s life, there are many healthy ways you can reach out to others. I don’t believe it is effective for us to keep “re-inventing the wheel”. We will help bring about greater change by working together, respecting one another in what is already being built and finding our place in the building process…every single brick has such value and meaning. Everyone has something to contribute.

1. First of all, know that you do not have to start some large organization to bring meaning to your child’s existence. Your sweet baby has already changed the world with his or her time here. In the gentle ways your heart has changed. In the way you cherish every moment of life with those around you. In the way you learn to laugh and live again. Second of all, there are many organizations already in existence you can get involved in. Your local hospital may have needs, or a local support group. You can begin there. I would suggest being part of the support group yourself before trying to start your own. Finding community first is important.

2. Sufficient Grace Ministries has branches throughout the country and we’re looking for others who are well-along in the grief journey and in a place where they are ready to help support a family. We hear from others sometimes who say they were inspired to start an organization after seeing our work. What we would love, if you’re inspired and at a healthy place in your journey, is for you to join with us in this sacred, amazing work. We provide training for birth and bereavement doulas (who receive training from SGM and are also certified through stillbirthday.com), remembrance photographers, crafters of items and more.

You can apply to serve as a birth and bereavement doula or remembrance photographer in an already existing SGM branch in: NW Ohio, NE Ohio, SW Ohio, Columbus, Central Kentucky, St. Louis, Central New Jersey Shore, Massachusetts (near Boston), Maryland, Southern Michigan (Detroit), and possibly New York. Nebraska is also in the works. Just follow the links below to apply and also we will need 2 letters of recommendation.

SGM/SBD Birth and Bereavement Doula (support person to walk alongside families)

SGM Remembrance Photographer

We also have needs for seamstresses to make Comfort Bears and burial gowns and crocheters to make wraps, hats, and gowns.

If you are further along in your grief journey, you can learn about starting a branch of SGM in your area here.

Please note that Sufficient Grace Ministries is a faith-based organization. Although we serve families from all faiths and walks of life without discrimination, we do ask that those serving with us also agree with our Statement of Beliefs.

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3. If you aren’t looking for faith-based organizations, can get involved in an organization that’s been established, that has helped your family through loss. There are many to choose from, and can be local or online. Many different perspectives are offered at Still Standing Magazine. Stillbirthday.com is a great resource. There are organizations like MEND, Faces of Loss, SANDS, and others.

4. You can create something beautiful with your hands as well. Paint, draw, write, sing. Let it all pour out and mix together until something is birthed from all that’s oozing from you.

5. When you’re ready, listen and show love to one mother. One friend. That is the best way to change the world. One heart at a time. Just being there. Just loving the person in front of you, and helping to meet one need.

6. Some people like to do random acts of kindness in their child’s name. That is a simple and life changing way to see your baby’s life make a difference in someone else’s life. We don’t have to travel the world to find our mission. It is often right in front of us.

No matter what, your child matters. Every life is precious. Every life matters. And, every life impacts this earth greatly.

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

Let it Go

Can’t sleep. In the wee hours of this morning, the words are begging for release. So, here I am.

Last night, I watched the Disney movie, Frozen. Several parts spoke to me in the deep recesses of my heart, the places most often tucked safely away.

When Elsa sings the words from “Let it Go”…

Don’t let them in, don’t let them see
Be the good girl you always had to be
Conceal, don’t feel, don’t let them know
Well, now they know…

My soul aches with recognition.

And, as she finally releases it all, she finds sweet freedom, creating beauty from her curse, dancing as she transforms into the gorgeous creature she was created to be. I think of His redeeming promise to make all things beautiful in His time.

And, by release, I mean, she embraces her curse, and sees the gifts hidden beneath the surface, beauty rising from the ashes.

Proclaiming…

It’s time to see what I can do, to test the limits, break on through.

A kingdom of isolation…no right, no wrong, no rules for me. I’m free.

So much like when a heart heavy with the woes of grief breathes it’s first breath of life in the land of the living. When the haze clears enough to remember what it feels like to live. The first foreign-feeling, hesitant laugh that arises from deep in your belly, sounding like it came from someone else…because in this unfamiliar new skin, it’s easy to forget the sound of your own laugh.

Or what it feels like to really live. Free.

And, maybe…maybe you never knew what that felt like anyway.

Before.

Maybe it’s impossible to know that depth of freedom and release, that fullness of life, until you have tasted the air in the valley of the shadow of death. Until you’ve been locked in the room, frozen with the curse. The one you can’t even explain to those closest to you.

It’s funny how some distance makes everything seem small
And the fears that once controlled me can’t get to me at all
Up here in the cold thin air I finally can breathe
I know I left a life behind, but I’m too relieved to grieve…

I am often asked how I can perpetually walk in this shadowy place, alongside those who are broken with grief.

I guess my answer would be…

Here, I can finally breathe.

 

 

Something We Need You to Understand

 

As I write these words, I’m praying you will feel the urgency that words on a page just can’t convey, and that you tell as many people as possible what I’m about to say.

Too many times to mention, we hear from families after a loss. Families right here, within driving distance of SGM. They received a fatal diagnosis in pregnancy and walked this path alone, because no one told them we were here. They delivered a baby into silence so thick it’s hard to breathe, and no one was in the room that understood what it’s like as parent to gasp for breath in that moment. They didn’t get beautiful pictures, or the perfect gown to wrap around their tiny baby. They didn’t get support that would continue long after they left the hospital.

Because they didn’t know we were here.

No one told them.

They come to us later, and over and over again we hear the words, “I wish we would’ve known about you before.”

Sometimes, they hear about us shortly after the loss of their child, sometimes years after.

Why?

Because no one spends their days thinking about what they would do if a baby dies. Well, no one except those of us for whom that wondering has become a reality. They hear about organizations like ours, and think, “Oh, that’s a nice thing.” Forgetting, or not paying attention to the irrelevant details.

And, another reason, the reason that spurs me to tell you with every fiber of my being to listen to what I’m about to say. Because this reason…this reason should never happen again.

When people hear that a baby is going to die or that a baby dies, they think it is too tender of a time to “invade” and tell the parents about this organization that can help. They will just wait until things “settle down”.  Give the parents some time. Or, they wait until they feel comfortable bringing it up. Or, it seems strange to have someone at the hospital offering support or taking pictures, so they don’t tell them at all.

THAT THINKING IS THE OPPOSITE OF THE WHAT THE FAMILY NEEDS.

Yes, I used all caps. Yes, that is how strongly I’m saying this.

Tell them. Tell them immediately. Put aside your own comfort and uncertainty. I have walked with hundreds, probably thousands of families online and a growing number in person. We can’t take away the pain of grief, and we shouldn’t try…but we CAN make sure there are as few regrets as possible and that the family is able to have every opportunity to cherish the gift of time they are given with their baby. We don’t just help AFTER the loss. In fact, there is much more we can do for the family before and during the time of saying goodbye to their child.  Even if there is little time, in an emergent situation when a baby dies without warning, we can still come and answer questions, offer support and walk with the family…providing services at the hospital. It makes a difference in the experience for the family. And, regular hospice, while wonderful, does not speak to the specific needs of a family facing the loss of a baby like perinatal hospice does.

Please.

Please put aside your own preconceptions about what is best for a family experiencing the loss of their baby. And, please, pay attention to all that I’m saying we offer. It isn’t just a package to get after your baby dies. We have trained birth and bereavement doulas and remembrance photographers, and resources for families from the time of diagnosis to years after the loss of their child.

And, don’t just tell them we’re here. Encourage them to contact us. Even if it seems out of their comfort zone. They can always decide if this isn’t something they want. I haven’t met a family yet, though, who wasn’t glad to have us enter into this sacred place and walk with them…even if they were hesitant at first.

In fact, I can give you several testimonies of families who weren’t sure what this was when first being told about SGM Perinatal Hospice and Bereavement Services. But, they soon changed their mind and said….”Call them back, get them here. We want what they offered.” And, they were so glad they did.

So much better than hearing…”If only you were here, it would’ve been so much different. I wish we would’ve known.”

Hearing that makes my heart ache and my stomach turn. We could’ve been there. We would’ve. But, no one told them we were here.

If you don’t sew, crochet, or make bracelets, if you’re not a photographer or doula, and you don’t feel led to volunteer in another capacity at SGM, there is something you CAN do. Something EVERYONE can do.

Make sure people know we’re here. Don’t hesitate to tell them. Don’t wonder if it’s the right thing. Don’t go by what you think you would comfortable with in this situation. You have no idea what it is like to walk in this place. Listen to the words of someone who does.

Please. I cannot convey this enough. It will make all the difference to a family walking this path. And, I guarantee, someone you know will need this information.  1 in 4 pregnancies end in loss. We provide services for conception to infancy, and beyond in some cases. Visit the links below if you’re unsure what SGM does. Everything we provide is free for families. They are never charged for our products or services.

SGM Perinatal Hospice Birth and Bereavement Services – 24 hour availability

SGM Remembrance Photography

Dreams of You Remembrance Materials (including a specially designed memory book, Comfort Bear, gowns, and other items)

Walking With You  Facebook Support Group (also meeting in person at SGM the first Monday of each month at 7pm)

Walking With You on the Blog

FAQs about SGM Perinatal Hospice Services

The SGM Staff

 

 

Holy Week

Holy Week.

This morning, while watching for school delays, due to a Spring Snow Storm, I heard the news mention that it was Holy Week.  It’s almost Easter.

Holy Week.

The words pierced through again. And, I closed my eyes. Fifteen years ago, I spent Holy Week on my knees, tears dripping on my worn bible, begging for an answer.

Asking for wisdom for what seemed an impossible choice.

I laid on the examining table wearing my dark green dress pants and soft ivory sweater. Usually by this stage of pregnancy, I was wearing full on maternity clothes.

Incompatible with life. Your baby has a condition called Potter’s Syndrome. This condition is incompatible with life. You have some decisions to make. They need to be made within a week….insert words about what happens to babies in the womb with amniotic fluid….poor lung development, no kidneys, possible contractures from trying to grow with no fluid….

You can induce labor early, or continue the pregnancy to term, or for as long as the baby lives. (There were other words. I can’t remember.)

We’ll need to know your decision within a week, due to the gestational age of the baby.

I didn’t even know what it would mean to induce labor early. Didn’t know what it would mean to terminate. I was 23 years old.

I called my regular OB doctor.

He said, “If it were my own wife, I would do the induction immediately. There is no sense prolonging the inevitable. It will be best for everyone.”

We sat around my kitchen table, Betsy, Dinah, Ginny, and me. Desperate to make sense of it all.

I wasn’t trying to be a hero. I was just trying to survive. To do what was best for the child in my womb and the husband and son who would have to watch me carry a baby sentenced to death for the next four months.

Would continuing the pregnancy in a womb without fluid hurt my baby?

Would my husband and son be better off if I just ended this quickly?

We had already stood beside one tiny grave and buried our twin daughters. How could we do this again? Would it be easier if I just took care of this?

In the middle of the night, I wrestled with the voice, dark and persistent, taunting…

Where is your God now?

I ran to my bible. Rain pouring outside, desperate tears pouring from me, lightning flashing, thunder crashing…the storm raging outside as desperate as the one raging inside me. Lord…help me. Show me.

That Holy Week, I searched. I asked questions of professionals. But, the real questions…none of them could answer. What does this choice mean eternally? What does this choice mean for my heart and soul? Not clinically. Not medically. But, spiritually.

And, how will we heal from this?

It was Holy Week, so eventually, I was led to read the scriptures leading up to the death and resurrection of Jesus. When I came to the part about Pontius Pilate, the words leapt from the page.

Pontius Pilate washed his hands…symbolically. He didn’t want the blood of Jesus on his hands.

I stopped.

The grief will come either way, I felt the whisper. I didn’t want the decision to be in our hands. We needed to leave it to God, to trust Him to carry us and to carry our Thomas.

And, He did.

The next day, I had an ultrasound scheduled. And, I had to deliver the answer. Our choice.

It was hard to see much on the screen, because of the low fluid. But, his face was turned toward me, and it was if we were looking directly into each other’s eyes. I never questioned my choice again.

This was my son. And, I was his mother. I may not be able to parent him long on this earth, but I would love and protect the baby growing within me for as long as he would stay.

You can read the rest of Thomas’ story here.

If you are facing this choice, and hearing only the clinical side from the medical professionals, we invite you to consider another path. To learn more or find support, visit our Perinatal Hospice pages.

 

 

Chicago Trip, The Haven Network, and Some Big Plans that Need Big Prayers!

Holly and I recently took a trip to Chicago, Illinois, to meet with some sweet blog friends and the amazing ladies at The Haven Network. We are currently doing research to support our plans to implement a new perinatal hospice and bereavement program in Northwest Ohio. We already offer many beautiful memory-making materials and online support to the families we serve. We would like to expand our services to local families to include more hands-on support. In addition to the current materials and services we offer to grieving families, we hope to:

Provide support for families facing a fatal diagnosis in pregnancy, including meeting with families to help create a birth plan to fit their individual needs.

Walk with families through the journey as they carry their baby, cherishing the gift of time while they wait through continued support, doctor appointments, etc.

Offer emotional and/or Spiritual support during labor and delivery and spending time with baby, if desired by the family.

Provide mementos: Dreams of You Memory Book, Comfort Bear, baby gown/layette, memorial jewelry, etc.

Capture the precious time with baby through professional photography services.

Follow-up support for families, including a support group at the SGM facilities.

Holly and I are so excited about all that God is doing and the incredible ways He is growing this ministry. We now have a beautiful building to meet with families in need of our resources, and we share a vision for future growth. Currently, we are praying for the financial provision and willing volunteers to keep moving forward with these plans. Please pray with and for us!

Stay tuned for some special Christmas Walking With You posts…and this year’s SGM Christmas Extravaganza 2012 giveaway!

Now…some fun snippets from our Chicago trip…

After a Steve-McQueen-inspired drive to the train station to get Holly and I to our train on time (due to my pathetic lack of time management), we anticipated our very first Amtrak ride in the wee hours of a chilly morning.

We were so pleasantly surprised by the comfortable, clean, and quite roomy seating on the Amtrak train. A trip to the dining car for a delicious breakfast of French toast quickly confirmed that I would not be travelling to Chicago any other way, if possible.

Bellies full, we allowed the rhythmic clickity-clack of the train to lull us into peaceful slumber…

We awoke happy and refreshed…

Soon, we arrived at Union Station in Chicago and made our way into the hustle and bustle of city life. It was apparent as we stepped into the taxi line that we weren’t in “Kansas” (Ohio) anymore. Life is much faster in the city than the country life Holly and I are accustomed to. Baby Evanee just went along with the flow happily, as usual!

After enjoying a delicious Reese’s cupcake at the Hershey’s store and spending a bit of time “girl” shopping at the Disney store, we made our way to Gino’s East for some authentic Chicago-style, deep dish pizza.

The lovely and sweet, Mary Yee, met us for lunch. It was great to hug her in person and we were so blessed that she took time out of her busy work day to meet us.

By then, we were ready to make our way to the next train to Geneva where we met up with my father, who took us to his Rockford home.

The next morning, we met with Kathy and Jean from The Haven Network. They were so gracious to answer our barrage of questions, as we tried to soak in as much information as possible to take back with us to Ohio. We are so grateful for the amazing work these beautiful women are doing to comfort grieving families. They are such an inspiration to us as we take similar steps to point hurting hearts toward hope. We can’t wait to work with them and share ideas in the future. It seems our hearts are knit together with the same purpose, and that is such a beautiful gift.

This inscription is written at the base of a statue standing outside The Haven…

We met sweet Kate Ferguson and her adorable girls, Molly and Lucy for lunch. I was enamored with Molly, a girl after my own heart, when she confidently gave her detailed order to the waiter. That child knows her way around a lunch menu, let me tell you. A classy lady-who-lunches at the ripe old age of five. Love it! And, love her!

 

Later, Carol took us shopping at the Crimson Ridge…an eclectic and stylish store with a plethora of goodies ranging from clothes to jewelry to flowers to cheese. We sampled the most fabulous cheese straight from across the border in Wisconsin…the cheese capital, don’t ya know.

Dad and Carol took us to Union Station to board our evening train home on Saturday. We had a wonderful, whirlwind, “swooping” trip, and it was so nice of Dad and Carol to take such fabulous care of us…as always!

Holly and I listened to a man playing a Johnny Cash song on his guitar while waiting to board the train for our sleepy ride home.

We arrived at the station in Bryan in the wee hours of the morning only to discover we would have to drive the (usually) hour ride back to Deshler through pea-soup-thick fog. We made it back, grateful to find Holly’s husband Anthony waiting to drive her the rest of the way home! Everyone made it safely home…and we were grateful for God’s grace, yet again.

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.