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

To Better the Man

Alpha Sig flyerA couple years ago, Ian, one of my son’s best friends, used to sit in my kitchen telling me how fraternities weren’t all about partying and mayhem. He spoke of philanthropy in flowery words filled with conviction. An excellent spinner of the words, I listened to his spiel with a smile and allowed him a slight victory this time. His examples were valid and respect worthy. Still, I wondered as a skeptical and protective mother does.

The years my son and his friends spent in my kitchen, eating and telling their boy stories were the most fun season of my life thus far. It was easy. I felt like they always blessed me more than I ever did for them, even then. They went off to college, and one in the Navy. Sometimes, they come back for visits, and tell their stories again, in my kitchen. Those times are sweet gifts.

Last year, Ian’s fraternity, Alpha Sigma Phi Gamma Zeta Chapter at Bowling Green State University, invited the ladies of SGM to bring our Comfort Bear supplies so they could help us stuff bears for mothers with grieving hearts. We gathered in the middle of their frat house and worked. It was such a blessing. I’ll admit, my heart softened a lot that day toward the idea of a college fraternity. All that I love about grace and way our Jesus accepts us as we are, well making our bears in the middle of a frat house…I think that sounds about right.

Last month, when Ian called me to ask if the gentlemen from Alpha Sig could host a fundraiser/service project for us, we were thrilled with the idea. We would set up in the middle of the student union and students could donate $5 to stuff a Comfort Bear for a grieving mother. So, not only would they be raising money for SGM, but also making bears! The boys worked and planned the event, making beautiful flyers and precious ribbons, all themselves. Those who couldn’t stuff a bear due to time constraints, could donate $2 for a ribbon. Ribbons made with the hands of these fraternity boys. The SGM Comfort Bear Team of six ladies worked hard, as well, cutting and sewing 125 bear shells to be stuffed in less than a month’s time! So grateful to the dedicated and hard-working volunteers at SGM. You ladies rock!

ians ribbon

This is what 125 unstuffed Comfort Bears looks like:
unstuffed bears

We were so excited for Tuesday’s event as Lynette and I loaded the van with stuffing and bears!
stuffing and bears

We arrived to find the gentlemen of Alpha Sig well prepared.
alpha sig boys

Students stopped to inquire about the enticing cute bears, and I listened as college boys explained to each one that these bears would be offered in packets sent by Sufficient Grace Ministries, to comfort grieving moms who have lost a child in pregnancy or at birth. My heart swelled with pride and a myriad of other emotions as I listened to Ian speak words that many seasoned adults would ignore listening to, much less have the courage to speak. Because people don’t want to know that sometimes babies die. Some members of my own family do not come to SGM or speak the names of my children. But the boys from my kitchen know their names. The faces of the students changed when they heard that these bears had such a somber purpose, and one by one, many dug into their wallets to donate $5 to stuff a Comfort Bear.

The managers of Starbucks came to ask about our setup and donated $40 after the gentlemen explained about SGM.
zachwork

three

sweet

quality control

pedro

more stuffing

letters

lauren

group

girls

girls stuffing

danny

cuilin

boys

boys sewing

audrey

anthony2

anthony

 

my hannah
Above is my son’s beautiful girlfriend, Hannah, a student of BGSU and fellow SGM volunteer.

This is my Ian, the young man who used his position as philanthropy chair of Alpha Sigma Phi to make this amazing Build a Bear for Moms event possible. His incredible efforts and hard work, along with his team of brothers and the generous students and staff of BGSU earned $900 for SGM and stuffed 85 Comfort Bears to be sent around the world in Dreams of You care packages!!!! I love him like a son, and could not be more honored by him or proud of him for what he accomplished on Tuesday, and for his willing and beautiful heart to do it.

my ian

The motto of the Alpha Sigma Phi fraternity is to Better the Man. On Tuesday, I would say these brave young men took giant steps toward being better men than most. The courage to show compassion, to look on the pain of another and offer something…even if just acknowledgment, to look even when it hurts or makes you feel emotion, the willingness to stand in the gap with another, to lay down your own comfort for someone else, to speak while others remain silent…that is the making of a better man. Those are the kind of men worth following.

Tears fell from my grateful cheeks as I struggled to find the words to convey to these gentlemen what their efforts meant for me and every other parent who has said goodbye to their sweet baby. I still can’t find the words, or stop the tears. The beauty of their hearts and their willingness to stand with us awhile, to offer all they could…well how can a mama find words for what that means to her heart? The ladies of Sufficient Grace Ministries love the gentlemen of Alpha Sigma Phi. And, you boys are welcome in my kitchen anytime. You will always have a place in my heart. Thank you is not nearly enough.

Bereaved parents, this day, the students of BGSU stood with you.
group pic build a bear day

*You can read more thoughts on this day and a bit about another Alpha Sig member named Zeke on my Still Standing post.

More pictures of the event are displayed here.

This…

Some days, I wonder about all the sorrow and brokenness this world holds. I wonder about the heaviness of grieving hearts. I wonder if what we do matters. I wonder if we are doing enough. Some days, when the tasks, needs, and shattered pieces of broken hearts stand like a mountain before us, I wonder…

Then, the answers come, quiet and still, but solid and true as they are whispered to my weary heart.

Why…why do we press on? Why have I become like a walking commercial for SGM on Facebook? Why do we keep looking at the hard things…weeping with those who weep…so many tears?

Why?

This is why…this…beautiful Ezekiel, son of Jennifer, holding the Comfort Bear that represents his sweet older brother Isaiah, who lives in heaven…two miracles at Christmas. Hope twinkling in the background…

 

And this…two beautiful parents giving back in the name of their precious son Michael Clifford “Peanut” Vollmer, donating Dreams of You items for grieving parents to Defiance Regional Medical Center. Thank you, Dan and Nancy, for your continued support.

 

And this…women gathering together to stuff and sew Comfort Bears at the new SGM facility…to encourage, share, and pray…so that mothers will have something to hold to comfort the ache of empty arms. In addition, many generous hearts recently donated about 70 yards of fabric to SGM due to a recent Black Friday sale on ivory blizzard fleece from JoAnn Fabrics. That will make more than 150 Comfort Bears!!

 

This…An amazing dad, Stacy Decker, father to sweet Chloe, who recently facilitated the donation of ALL our office furniture and some other necessary items for the SGM office from Xavier University!! Tim and I drove to Cincinnati and loaded our truck and trailer with items for SGM! Thank you, Stacy and Xavier…you have blessed us greatly!

Sometimes I just sit in awe, that we have such a beautiful place to meet with families and do our work. His grace astounds me. Those moments chase away any doubts or accusations of “not enough” and “what if”. God’s hand is evident in this place, in the generosity of each person we encounter, in His faithfulness to meet every need and go before us, in the swift ways He is moving to grow and build.

And…this…my children in heaven. The reason we have this passion in our hearts. The reason we press on, when we’re weary and heavy with the threat of “not enough”. The reason we once again crawl to the cross, asking for the eyes that look beyond what is seen, hearts that seek to believe in what remains invisible this side of heaven.

Faith, Grace, and Thomas. The first time I had a meeting in the office, I kept looking over at their wall, astounded by the gift of their lives, the beauty before me. Astounded that I am privileged to be their mother. I looked over at a picture of my own mother on the shelf as well, feeling the scripture in Hebrews which talks about being “surrounded by so great a cloud of witnesses”. I sit straighter, pressing on.

 

This…the names of sweet babies in heaven…added to our SGM Angel Tree

 

 

And this…women gathering. Sharing our stories. Crying together, laughing together, remembering together. United as mothers who have walked a similar…and yet individual and unique…path. Walking together.

This is why I will keep going, seeking the Lord, stretched and small, carried by a God whose “big enough” always covers my “not enough”. Even on days when I want to hide out and wallow quietly in the smallness, you may see me doing more of this…

 

So that we can do more of this…

Thank you for your continued prayers and support of this ministry.

Walking With You ~ Sibling Grief

Walking With You was created to help support those who have lost a child. Together we share our stories, helpful information, scriptures, encouraging words, prayer requests, and more. Thank you to those of you who have joined us for the past few weeks…for courageously sharing your stories. If you haven’t joined us yet, and would like to, you are more than welcome.

This week, we are sharing about the effect our loss(es) had on our children (sibling grief). If you did not have children at the time of your loss, we are also sharing about subsequent pregnancies (after the loss). If you have not had a pregnancy following the loss, yet, you may share your feelings about facing your next pregnancy. Hope that wasn’t too confusing. For this post, I will be focusing on sibling grief. To read about our family’s journey with pregnancy after loss, click here.

Timothy was two years old when we were expecting Faith and Grace. His little life was turned upside down by my extreme illness and constant vomiting. Then there was a long hospital stay and little contact from me. Of course, he was doted on by his grandmas (my mom and Tim’s)…so much so that when I finally returned from the hospital, I had to peel him off my mom. He was getting used to the “spoiling”!

When Faith and Grace passed away, I told him as simply as I could, in language he could understand. He has always been a very perceptive person and a deep thinker. I told him that Faith and Grace were very sick and too sick to stay…that God took them to heaven to heal them. I shared that He gave them new bodies in heaven…bodies that were perfect and they would never be sick again. He seemed intrigued about the fact that they would have new eyes to see differently than we do.

In the weeks following their passing, Timothy drew pictures of his sisters (stick figures with really big heads!). He would sometimes give me a picture when he saw me crying…to “make me feel better”. He knew instinctively how much I missed them. I ran a home daycare at the time and during the early weeks of my grief, I was not working. For Timothy that meant no children filling our house with life. Lonely and sad, sometimes he would stand at the window and say, in the saddest little voice…”no kids coming today”.

He loved to talk about his sisters and look at their pictures. He didn’t seem to notice their brokenness. That was so refreshing to me. Because I didn’t see their brokenness either. As time went on, others grew uncomfortable or tired of hearing about Faith and Grace. But he never did.

We would talk about what heaven was like and what they would be doing in heaven. On their first (and subsequent birthdays), we would celebrate together (with my friend Ginny sometimes) with cookies and cupcakes…pink, of course for our little girls. He would blow out the candle. We would talk about them playing in heaven and Timothy decided they would be wearing Barbie pajamas! I loved his child-like faith…and I loved his openness in sharing about his sisters. Sometimes he would even run to get their picture when a visitor came…making others uncomfortable. I loved his lack of inhibition. And, truth be told…I think we could learn a little from the way children experience grief. They live their lives and let out their feelings as they come.

With Thomas, Timothy had already experienced loss. So, he knew that pregnancy did not guarantee a baby. It broke my heart that he knew that at the tender age of four years. He prayed for this baby to stay. He prayed for a brother. A brother, he was given. But, we soon found out…that this baby would not stay either. We told him that Thomas was very sick, and the doctors say he probably will not stay. He will go to heaven when he is born. It was so confusing, because Thomas was still alive in my growing belly. He shook his head and his little voice sounded strangled as he choked out the words. “So, I won’t get to hold this baby either. He will not come home.” We told him that we could pray for God to heal Thomas…and let him stay…that God could do anything. And we needed to trust Him. I hugged him. He was heart broken, but trying to be tough.

When Thomas was born, it seemed like such a whirlwind. As long as I walk this earth, I will regret not bringing Timothy to meet his brother when he was alive…not letting him hold him. Tim was in so much turmoil and I didn’t want to add to it. I didn’t know if it would be more painful or confusing to Timothy to meet his brother. But, that decision caused Timothy great sorrow…and I’m so sorry for it. Not meeting his brother and holding him was very hard for Timothy…and he talked about that for a long time. I did bring him privately to the funeral home, and he touched Thomas’ cheek. But, his skin felt different than a baby usually feels. And the experience was not a comfort.

We talked often about Thomas and what he would do in heaven also. We shared pictures. Timothy kept praying for a brother. We started traditions, like giving a shoebox filled with presents every Christmas to the Samaritan’s Purse organization in memory of each child. In the early years, we bought Christmas ornaments to remember the babies. We had birthday celebrations…sometimes just Timothy and I…for many years. We would read “Mommy, Please Don’t Cry” and “Someday Heaven”… we loved to talk about heaven. And those talks were a comfort to my heart as well as his.

In the fall of 2000, God answered Timothy’s prayers and blessed us with another pregnancy.  Timothy spent the time praying that this baby would stay. He would often ask me, “Mom, do you think this baby will stay?” I could never say yes for sure. I would say that I hoped the baby would stay…and that I was praying, too. We almost lost James, and there were complications in the first and second trimester. I don’t think I shared those with Timothy. His prayers for his brother to stay were so heart-wrenching. He was six years old by this time. So young to have faced such serious truths of life and death.

His brother, James, was born in May of 2001. And, this time, he came to the hospital. He held his brother, with a sigh of relief. James came home. And, he doted on him lovingly (for the first couple years, at least!).

When my mom passed away in October 2006, Timothy walked the path of grief once more. This time, as a young man. My mom was sort of “his place” where he was always adored…loved…accepted, just how he is. She was his person, you know…the person you go to know matter what. The one who will love you unconditionally. They had a very special relationship. I know it has been heart breaking and life changing to say good-bye to his grandmother. And, I know all of the loss he has experienced has shaped his heart and his life. He had to learn very young what most of us don’t know until we are much older.

Sometimes, we do still talk about what life would be like with all five children here in our little house…and what they would be doing now. We have always focused on the hope of heaven…that we will see our loved ones again someday. And there will be no more good-byes…no more tears. And bodies will not ever be sick or broken.

And I heard a loud voice from heaven saying, “Behold the tabernacle of God is with men, and He will dwell with them, and they shall be His people. God Himself will be with them, and be their God. And God will wipe away every tear from their eyes; there shall be no more death, nor sorrow, nor crying. There shall be no more pain, for the former things have passed away.”

Then He who sat on the throne said, “Behold, I make all things new.” And He said to me, “Write, for these words are true and faithful.” ~ Revelation 21:3-4

For more thoughts on sibling grief, and to read how the Dreams of You Comfort Bears have been helpful to children in working through their grief, click here.

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Not a lot of resources this week. I just want to encourage you to talk to your children. Include them as much as possible in the process. Share moments and make memories with them that include your babies in heaven. Realize that siblings are grieving as well. Be available to talk and listen. Answer their questions simply and age-appropriately. Shower them with love and reassurance. Keep their schedules stable and structured. Routine can be reassuring. Share comforting scripture about the promise of heaven. Pray with them and encourage them to pray. There are things, as I have shared, that I regret…it’s difficult sometimes to make the best decisions in our own grief. Know that God’s grace can cover our mistakes.

A few books:

Sibling Grief ~ Wintergreen Press

Mommy Please Don’t Cry

Someday Heaven

Tear Soup

Someday We’ll Play in Heaven ~ Strannigan (Standard Publishing)

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Next week, we will talk about “What People Say”…some of the words people have said to us in our grief…for better or worse. How have our friendships changed. I also would like to share a little about grandparent grief. Thank you so much for joining us.

Love to all…

Children and Grief

 

Sarah from She Brings Joy recently wrote a beautiful post about her son’s attachment to the Comfort Bear SGM sent her after the loss of her daughter Beatrix. I read it after a week of reading many emails from grieving mothers…a week of preparing shipments, praying prayers, talking to mothers preparing to meet little ones and fill brief moments with a lifetime of love and memories, a week of watching the inbox fill again with requests from grieving hearts.

Sarah’s words were honest and real. They answered the question of my weary heart. They reminded me of the reason we press on, doing what little we can for broken hearts. Sarah wasn’t thrilled with the idea of a bear to fill her empty arms when all she wanted was her daughter. I could relate. I often wonder the same thing. How can a bear help this canyon of sorrow? She took out the Dreams of You Memory Book, and set the bear aside. I probably would have thrown it, in the early days of my grief filled with anger and despair, to be honest. Like Sarah, I am not much of a hugger of bears. Although, since my mother has gone home to heaven, I’ve spent a few nights curled up and hugging one of the last bears she made, tightly, aching for her. Some mothers have held the bears and cried. Did it fix the ache…no, but it was a small comfort.

It was Sarah’s son who asked for the bear, and formed a precious attachment to it as he found a way to grieve his sister, naming the bear Beatrix…and now affectionately called Bea Bear by his family. Bea Bear sleeps with him at night, hangs out on the couch with him, goes everywhere with him. Sarah says, “I have come to realize that this bear is his memory box. I have my box that I retreat to when I am sad, pulling out her tiny clothes and smelling the hospital smell. He carries his around, wearing his heart on his sleeve.”

 

Sarah’s story is not uncommon, we have found. Many families write to us that their children have formed attachments to the Comfort Bears, playing with them, calling them Brother Bear, or naming them after their siblings in heaven. Children grieve with a refreshing honesty that we adults often lack. They live out loud, play out loud, laugh out loud, and grieve out loud. They embrace the concepts of faith, heaven, and Jesus with a simple exuberhance…unyielding, unquestioning. Perhaps it’s the reason God requires a child-like faith from His people.  We can learn a lot from the way children handle loss and life.

This picture from another sweet mama named Heather also touched my heart recently. Heather and her daughter are pictured below, with their “Journey Bear” at the October 15th Remembrance Service. I still hope to hug Heather in person one day.

 

My mother originally created the Comfort Bears to fill a grieving mother’s empty arms. We never anticipated how they would be used to comfort the ache of a brother or sister’s grieving heart. The bears offer a simple way for siblings to act out their grief. They can play, snuggle, hug, and nurture the bear…activities they are longing to do with the baby that they were anticipating as a playmate and friend. The baby that never came home. These are natural ways for young children to express their grief on their own terms. It feels safe, non-threatening. The stories we hear are similar, and tug at our hearts each time we read one.

I was sitting at the funeral home recently with a child who lost his father. In awe of his bravery, I sat awhile with this special friend of mine. We talked a bit, and quietly played the games that a friend had brought to the funeral home. A few of his friends, students in his class, filed in, and some plopped down beside him. Others gave him small gifts they made. He accepted the gifts with grace. We played a little, talked a little, and sat side by side a little. We talked about big stuff and small stuff, everyday stuff, school stuff, memories of his dad, and just whatever. I thought about Job, and his friends. I thought that they were a comfort to him when they just sat quietly with him. It wasn’t until they started judging that they became hurtful. Kids don’t do that.

Kids know how to just sit and be with you awhile.

I like that. It’s the whole idea behind walking with you. Sometimes, the best we can do is just sit with someone awhile, where ever they are on this walk. Maybe walk alongside them, praying, weeping, rejoicing, living…one foot in front of the other. The other thing my young friend has taught me is that it works better when I do more listening than talking. Children will lead the conversation. And, they need to let out their thoughts and words in whatever avenue works for them. Whether it’s writing, drawing, playing, talking, etc. Just be there…be available. Let them lead the way. Grown ups aren’t a whole lot different when their world has been shattered into a million pieces that don’t make sense. They want a friend that will love and listen, without judging. A friend that will just sit and be with you awhile.

For more ideas on talking to children about grief and offering them comfort, please visit this former Walking With You post.