Embracing the Gift of Time: Micah’s Story

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Over the last couple months we’ve had the honor of walking with the Wilhelm family as they waited to meet their son, Micah. I will let Micah’s mother, Jenna, share the details of their story below. But I wanted to share a bit from my own heart about our time with this beautiful family.

Besides the beauty of this couple, inside and out, I was struck by the love and support they exemplify with one another and their family. The faith and love they share is so evident in the way they’ve walked this journey. We had the pleasure of several conversations over the last couple months as Jenna and Nate planned the birth of Micah and the time they would spend with him.

 

Nate and Jenna

During Micah’s delivery shortly after we arrived at the hospital,  I waited with his grandparents as SGM Remembrance Photographer, Brittany, took pictures of his welcoming and baptism. Jenna had handed me a bag of items that their family and friends had gifted them as they waited to meet Micah. She wanted pictures taken with Micah and each of the items. As we talked and waited in the hallway, I took out some of the contents and asked about the story behind them. The first thing was a teddy bear, given by Jenna’s father. He said it was a tradition in his family that the grandfather give a teddy bear to his grandchild, a tradition he wanted to continue. It touched my heart, the meaning behind the bear that would be given to sweet Micah…and the meaning behind the other gifts as well. There was book from grandma, a cross from the other grandma, and several other special mementos from aunts and others. There was also a tiny Indian toy that had been one of Daddy Nate’s favorites as a young boy according to his mother. The toy came with the movie, Indian in the Cupboard, that Nate used to watch as a child. The tiny Indian would be placed with Micah in one of his pictures.

The bag represented the dreams they had for Micah, and it was an opportunity to celebrate him in the ways that a first child and grandchild should be celebrated. It was an honor to meet Micah, to help his family celebrate his life, to stand with them on the sacred ground where heaven meets earth…and to capture a lifetime of love and memories that will be forever cherished by those who loved him. The Wilhelm family is such a wonderful example of embracing the gift of time they were given with their child. I’m so grateful for the love shared within his beautiful family.  ~ Kelly, SGM Support Companion/Doula

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The following was posted from Jenna a week after Micah’s birth.

Jenna:
“This is an update regarding our family and what we have been experiencing the past few months. A week ago today, we welcomed a beautiful baby boy named Micah Andrew. He was born via c section at 37 and half weeks old. It is with sadness today that we buried him. Although we only had a short time with him (as he only lived a couple of hours), we loved and embraced every minute of it. He was a miracle child in every sense of the phrase.

At 13 weeks we were told at a specialist appointment (which we had gone for something else, a treatable issue) that his chest cavity did not develop and that his organs were forming outside of his body. We received support from the doctors and were told this was random and was not caused by anything we did. We were told that it was very rare (~1-20-30,000). We were also told to terminate the pregnancy as it would not result in anything but pain, heartache, and ultimately his death (not to mention a probable c section delivery). We were told there was pretty much no chance he’d make it full term due to the severity of this fatal diagnosis.
When we chose to continue with the pregnancy, we were given love and support by our families and the doctors, which we will forever be grateful. Despite all odds against him, Micah kept growing.

To say this was/is the most difficult thing Nate and I have been through is an understatement, but we also say with complete confidence that we were able to experience moments of pure joy. God’s hand was in this the entire time, allowing us to feel Micah kick/move often, develop a personality/respond to our voices, and allowing us to love and celebrate this baby as he should be. Carrying a child, was incredible, and unfortunately it is a blessing some families do not get to experience. For that we are grateful. Micah made it to full term, was delivered safely, and baptized. We were able to spend time holding him and loving him. Grandparents were able to meet him as well. Through God’s mercy, Micah was at such peace, we were unable to tell exactly when he passed.

This post was meant to accomplish many things. First and foremost, Nate and I ask out of respect that this does not turn into a pro-life vs pro-choice argument board out of respect for our son and family as this is not the intent of this post. We’d like to take this opportunity to thank everyone (friends, families, churches) for the continued love, prayers, support, gifts/cards etc…It truly has shown what wonderful people we have in our lives. We’d like to thank the doctors for their wisdom, skills, and support/love with this pregnancy. We could not have asked for a better medical team and experience given the circumstances of this pregnancy. We would like to thank Kelly Gerken and Sufficient Grace Ministries for their support. This is truly a wonderful and selfless organization. Nate and I encourage anyone given a difficult circumstance with pregnancy to contact Kelly. They provided many items we are able to keep in memory of Micah, supported us at the hospital, took pictures of our beautiful baby, and countless other things. If you are looking for a great cause to donate to, again please consider this organization, as unfortunately Nate and I have found that many families have dealt with similar situations (many more than we initially realized).

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And last but definitely not least, we thank God and our Savior Jesus Christ for his mercy through these past few months, allowing our boy to beat odds so we couldDSC_1364 meet him, and giving Nate and I strength when we did not have it. Micah means “Who is like God?” and our answer to this is absolutely no one. He is all powerful, merciful, all-knowing, faithful…he is EVERYTHING. We were blessed to see all aspects of life… from the beginning to the end, and it is because of Jesus we are confident we will see and hold him again.

Please feel free to like/share this post, as encouragement for those who have been or will be given difficult situations with their pregnancies. Let this serve as encouragement if you are able to/choose to continue with those pregnancies…that although it will be difficult, there are opportunities for joy and happiness to come from it.
Thank you again- love Jenna and Nate”

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For more information about the perinatal hospice services offered by Sufficient Grace Ministries, please click here.

Under that link, you will also find information about birth planning, memorial planning, and other resources if you are carrying a baby with a life-limiting diagnosis. You can also request Dreams of You memory-making resources here.

*Thank you to Brittany Yankowski (SGM Remembrance Photographer) for taking these beautiful images of the Wilhelm Family.

Ways to Create and Keep Memories With Your Baby ~ Before and After Goodbye

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Guest post by Andrea Soergel

                It is a naturally human thing to desire to be remembered.  In our quietest, deepest times of soul-searching, I think most of us would admit that we ponder what we have done that will leave a mark on this world.  What will be left for future generations to know that we existed?  That we were here, and we lived and loved and we meant something.  There are some things we can do to leave that lasting imprint.  First and foremost, if you’re a parent, you can raise children that are made to feel loved and secure.  We do our best to guide them and provide boundaries that will create adults who do THEIR part to have a positive impact.  If we don’t have any living children, we may do some kind of work that has lasting value, be it our actual job or volunteering.  We can all leave a positive impression on our world.

                So, what are we to do when our anticipated and much-loved child dies?  Where is their legacy?  Where is the chance for them to leave their touch on this life?  It lies with us.  The living, who loved them and nurtured them, whether it was only while in the womb, or for brief moments or days beyond.  We can carry their torch.  We can make sure their story doesn’t end with their physical exit from this earth.

                I was in this spot, and truthfully, feel that I will forever be in this spot, as long as the Lord allows me to be here.  Our son, Haven William, was diagnosed with anencephaly (a fatal neural tube defect) at twelve weeks into my pregnancy.  We were blessed with twenty weeks to enjoy with him, cherishing every little kick and hiccup.  He left us quietly at thirty-two weeks and was born still on February 13, 2004.  Our planning for honoring Haven began before his death and subsequent birth.  We have continued to keep him present in several different ways over the last twelve years.  I have also heard of a lot of really cool ways that other people are remembering and honoring their sweet babies, too. 

Before Birth:

                -Capturing your baby’s heartbeat.  One site (mybabysheartbeatbear.com) provides everything you need to record the heartbeat and place it inside a stuffed animal.  This is not the only place out there, of course, but you get the idea.  Doctor’s offices can often provide print outs of the heartbeat as well.  Some people even choose to then have this turned into a tattoo.  Of course, you can always just have the recording to treasure without doing anything fancy with it.

                -Paint your belly.  This one is fun for siblings to be involved with.  There isn’t a lot of prep work or cost involved~just get some paint, bare your belly, and go to town.  Of course, pictures to document are a necessity.  It is also a good chance to talk to your other children about what is happening with their baby brother or sister in a more light-hearted setting.  I also want to emphasize that, while this may be super fun for kids, you can have just as much fun doing this with you and your spouse or partner.

                -Make a belly cast.  This one obviously involves more prep work and cost, but can be a really meaningful remembrance to have.  Some people choose to have the casts painted and then display them in their home.  They are just as lovely unpainted and stand as a testament to the little life you carried.  The popularity of belly casts is growing and you can even buy kits at places like walmart.com and target.com, as well as many other places.

                -Maternity Photos.  This one is self-explanatory, but there are so many lovely ideas out there.  You can choose a place that is particularly meaningful or fun for you and your family and have photos done there or virtually anywhere.  I have seen beautiful portraits done in studios, as well as in the outdoors or their home.  Maternity photos are always meaningful, but even more so for a baby whose life is expected to be brief.  You can use a professional photographer or even just grab a friend and ask them to help out by snapping a few pictures.  You will be glad you did!

                -Celebrating the kicks.  Full disclosure here-this one is my favorite and it doesn’t require much explanation.  We loved having our other children and family feel Haven kicking away.  We enjoyed it immensely and it is something I will never forget.  One suggestion that I wish we had done was to record some of those sweet moments.

The birth day:

                -Photographs and more photographs.  Some people choose to have professional photographers there for the birth of their child and some prefer just to have family or to take the pictures themselves.  You can’t have this day to do over again, so make it what you want it to be.  Whatever direction you choose to go, you will never regret having a LOT of pictures.  Don’t forget the shots of different family members with baby, too.  My dad passed away two years after our son was born and I treasure the photos of him with Haven.

                -Footprints, Handprints, and molds.  You can purchase inexpensive mold kits in many different places.  Usually the hospital staff is very kind about helping you with the molds and prints.  Once you have them you can do different things with them.  We have Haven’s footprints framed on our wall and we also have a stamp that was made from one of his tiny, perfect feet.

*I have to take the opportunity to plug Sufficient Grace Ministries in this area.  The care they give to families and their babies is top-notch and they provide photographers as well as mold kits and supplies for hand and footprints. If you are in the state of Ohio, they will provide trained support doulas and remembrance photographers to walk with you and help capture precious memories of your time with your baby. They can also help perinatal hospice families with birth planning and offer online and teleconference consultations for families and birth professionals worldwide.

Beyond:

                This is the part that can be so daunting.  It can be easy to come up with ideas to honor our babies when we are right in the midst of the situation.  It is always present in our minds and hearts.  But, as time passes, it can take a little more effort to think of ways to keep our baby’s story going.  Of course, it is always right there in OUR hearts and minds.  It doesn’t go away.  There are some creative ways for your precious child’s memory to endure, even beyond the walls of your home.

                -Love letters in the sand.  I cannot take credit for coming up with this idea, but it has really been huge for us.  When our friends or family travel, they write Haven’s name in the sand, take a picture, and send it to us.  Sounds pretty simple, and it is, but I really can’t tell you how much it means to us.  When we first started doing this, about eight years ago, I wrote a post on Facebook asking anyone who was going on vacation that summer if they would write Haven’s name for us.  It has taken off in a way we never would have expected!  We don’t have to ask anymore and people have sent us pictures from all over the world.  At the time of this writing we have Haven’s name on four of the seven continents.  We hope to get all seven eventually! (Sidenote:  Know anyone in Antarctica??)  This is so easy and I think you will find that your friends and family are more than happy to do this for you.

                -Book drive.  When the year arrived that our son would have started kindergarten we felt like doing something a little bigger.  I am a book lover and so it seemed a natural fit that we would do a book drive for our school library.  We have two older children and we sent out letters to their classmates’ families, as well as to our family and friends, asking them if they would consider donating a book to the school library in Haven’s name.  It was very successful and we added over seventy amazing books to our collection.  They had their own special shelf and each book has a label that says, “This book was given in memory of Haven W. Soergel by the loving donation of family and friends.”  We also had friends and family who donated books to our church library, as well.  I know that any public library would also welcome a donation and they are happy to have labels inside with your baby’s name.  In a similar vein, for one of Haven’s birthdays we requested donations of the book A Gift of Time be given to Sufficient Grace Ministries in his name.  SGM puts a label in the book, which they send out to grieving families all over the world.

                -Random acts of kindness.  I really love this idea.  The idea behind this one is to ask people to do a “random act of kindness” in honor of your baby and then report back to you what they did.  This is such a great example of using your pain and loss to put beauty out there in the world.  An example of what this looks like can be found on the Facebook page, “Acts of Kindness for Manny’s Birthday”.  Stacey and her husband lost their son, Manny on August 7th, 8/7.  Their idea is to try to get at least 87 acts of kindness done in Manny’s name on his birthday.  How cool is that?  This could obviously be tweaked in a lot of different ways to make it personal to your child.  It costs you nothing, brightens someone else’s day, and honors your baby’s memory.  It doesn’t get any better than that.

                -Christmas pictures and family pictures.  I love Christmas and I really get into writing a family Christmas letter and planning out our Christmas picture of the kids each year.  One of my favorite parts of the picture is figuring out how we will include Haven.  Sometimes we do it in obvious ways, for example, one year we had the bigger kids holding a picture of Haven.  Sometimes it is more subtle, and we actually have friends and family who look forward to see how we have incorporated our boy each year.  We have positioned the children in front of the tree so that one of Haven’s ornaments is in the picture.  We have a blue bear that represents him in other pictures.  Some families use their Comfort Bear in each family picture or other beloved item to represent their baby. One year our youngest son was wearing a Pregnancy and Infant Loss Awareness Ribbon.  You can get so creative with how you include your little one.

                These ideas are just a little taste of the numerous ways you can memorialize your baby in your life and the lives of your family.  An added benefit of doing any of these activities is opening up the door for others to speak to you about your baby.  In the babyloss community we all know that so many people are afraid to talk to us about our children because they don’t want to upset us or “remind” us.  When our loved ones see us actively including our baby, it gives them permission to do the same.  And ultimately, don’t we all want the chance for our baby’s story to continue and have an impact?

For more ideas and information about creating memories during pregnancy when a baby’s life is expected to be brief, to find in-person or online support, to request resources, or for memorial ideas after birth and goodbye, please visit the links on the Sufficient Grace Ministries below:

SGM Perinatal Hospice Services

Making Memories Before Birth

Birth Planning

Memorial Planning

What Qualifies You To Do This?

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I pled my case to the anesthesiologist on behalf of the mother I was supporting. These memories, those initial moments in the operating room when her baby emerges from his mother’s womb are precious and fleeting. They may be all she has of his time living earthside. It is her desire to have a photograph of those moments. I promised to respect the need for a sterile environment….to scrub up, cover up, hold my breath.

Not budging on the strict policy not to allow a remembrance photographer into the operating room, she shook her head. And, with resolve and authority looked into my eyes, asking…

“What qualifies you to do this work?”

It’s a legitimate question and one I don’t mind answering.

“I am the founder of Sufficient Grace Ministries, one of the nation’s few stand alone perinatal hospice birth and bereavement centers in the country, a certified SBD birth and bereavement doula. I’ve supported thousands of families online and more than 100 in person since 2004…”

She shook her head again…interrupting.

“But what qualifies you to do this work? What DEGREE to you have?”

“I took training to become a birth and bereavement doula. It is not a degree. It is a certification. I also developed my own birth professionals training (2006), teaching birth professionals about the importance of compassionate care…”

“No…what college degree do you have?”

“I only have an associates degree in early childhood education, ma’am. No college degree in this particular field. But, I do have more than eleven years experience. And, I’m a published…”

“So. What QUALIFIES YOU to do this work?”

“I’m a mother who lost three of my own children, and I know how important it is for this mother to have these precious memories captured of her brief time with her baby.”

She nodded. No more questions.

I am also a professional, highly qualified and experienced to provide the support that we offer, to develop and lead hospital trainings, to publish written materials and resources. But, she is right. I am lacking in the letters behind my name. It doesn’t mean that I’m not skilled and quite knowledgeable in this field. It doesn’t mean that I’m not educated and experienced. It does mean that what qualifies me to walk with another broken-hearted family in the wilderness of grief isn’t something that can be taught in a university, the kind that values letters behind your name. The best way to become an expert on being a poured-out vessel of God’s love is to allow yourself to be poured out in service to another human being in need. I didn’t tell her that what really qualifies me to be in that room comes from an authority much higher than she or I or any university in existence. That there are no letters that she will recognize behind my name, because brave women had to create this model of care.

I am amazed most often by the openness of birth professionals and hospital staff to bend or even change policies to on behalf of a grieving family facing the loss of their baby. Most of the time, they are so compassionate and accommodating and I have nothing but gratefulness for the work they do and the ways they allow us to come alongside families and offer hope as we honor tiny lives together in that hospital room…in the place where heaven meets earth. We stand together, and I’m honored to stand with them.

But every now and then, steely eyes ask that question…what qualifies you to be here? And, I smile.

I smile as I think of the loving God who fills the room with grace for every soul. I smile as I think of my own children and the way that simply being their mother qualifies me to do things I never thought possible. I smile as I think of every tiny baby footprint I’ve placed on the pages of a Dreams of You memory book…footprints carried forever in my heart. I smile as I think of the birth professionals who thank us for being there with the families…and with them. Who hug me as they reflect on a new perspective after attending our training. I smile as the hesitant doctor looks up at me with a nod of respect. Respect earned. Because despite the lack of letters behind our names…we are good at this job. Not because of our own ability. But, because we said yes to a very big God who fills us with love and abilities beyond our own to care for families and their tiny babies in the most broken of moments…shining impossible beauty in the midst of it. I smile, because He doesn’t care and isn’t a bit hindered by the lack of letters behind my name. And neither are the families we serve.

I took the pictures in the operating room that day. If you’re wondering. And, I’m grateful to the anesthesiologist who didn’t allow my lack of “qualification” to keep me from doing so…and to the God who is more qualified than both of us.

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If you have a heart to serve bereaved parents with the support described above, SGM is hosting our annual volunteer retreat and training. Learn more about it at our event page. Those outside Ohio, register here.

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.

Celebrating Every Moment ~ Scarlett & Vivienne

I listened to her message on the way home from a vacation in the mountains. When I called her back, she didn’t answer. I left a message. And, called again a few days later. Because I know the courage it took for her to pick up that phone and make the call to ask for perinatal hospice support.

The first time I met her, she pulled out the copy of A Gift of Time I had given to her through another SGM Volunteer months before. So many pages marked with colored tabs…pages that spoke to her mama heart. We call her Amazing Amanda. Because she is. Amazing. And so are the sweet baby girls who were still swimming around in her womb the day I met her and her husband Travis.
She was carrying twin daughters, and one of them (Scarlett) had been diagnosed with acrania, a life-limiting diagnois. To further complicate the situation, the girls were monochorionic and monoamniotic, contained in a single chorion and amnion, also known as Momo twins. Due to these conditions leaving the girls susceptible to a myriad of possible complications, they were closely monitored throughout the pregnancy.

It was important to Amanda to plan every detail of her time with Scarlett and Vivienne. Planning was a comfort to her. Planning gives parents back some of the control they have lost with a difficult diagnosis in pregnancy. She was very private, and needed to experience her journey on her terms in the timing she was comfortable with each step of the way. During her pregnancy, only a select few were told about her babies’ condition.

“We wanted to celebrate their lives while they were with us. This wasn’t the time for grief and sorrow. That would come later. Right now, they are with us; living,” Amanda shared.

Many families facing a life-limiting diagnosis for their child face regrets for missed opportunities to make memories with their babies. Not the case for Travis and Amanda. They made sure that every moment was filled with love. Amanda and Travis wanted to truly cherish the gift of time they had with their daughters.

Scarlett and Vivienne’s Comfort Bears from SGM were a special way to reveal the big news!

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Throughout the journey, the family rejoiced at each goal set…and met. To give the girls the best chance of optimal health, the goal was set to carry them to 32 weeks unless they showed signs of struggle before then. Amanda spent the last eight weeks of the pregnancy away from her husband and other two children at a well-equipped hospital two hours away from home. The staff celebrated each milestone with the Mangas family.

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Some of the planning included funeral planning, announcements, pictures, writing of the obituary, as well as what her baby girls would wear, what photographs would be taken, special mementos, etc. As we met to plan the time Amanda and Travis would have with Scarlett and Vivienne, Amanda loved the idea of using her own wedding gown to make identical dresses for Scarlett and Vivienne. One of our SGM seamstresses, Tracey Schwiebert worked to make the gowns in different sizes in case the girls were born before we expected.

It was such a blessing to be able to hand the beautiful gowns to Amanda on the day the girls would be born via the scheduled C-section. Amazing Amanda and her amazing daughters made it to their goal. You can see the sense of peace and accomplishment on Amanda’s face as she held the gowns in her arms. It would not be long before she would hold her precious girls.

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The day had finally arrived, and we were honored to walk with Amanda and Travis every step of the way. Erin Foster, SGM Remembrance Photographer and owner of Irish Eyes Photography met me at the hospital to help capture the images that so beautifully tell this family’s story.

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Pastor Tim traveled to the hospital to pray with Amanda and Travis, to sit with the family, and to pray over sweet Scarlett after her birth.

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Nurse Tammy has walked this journey with Amanda since the first day the Travis family heard the news that this pregnancy was not going to go as originally planned. After working her shift, she slept for a couple hours and stayed at the hospital to join the family so she could serve as Scarlett’s personal nurse. Pictured below, Tammy comforts Amanda as she hugs her son before being wheeled away for surgery.

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Both girls were born alive. Vivienne was taken to the NICU where she responded extremely well, breathing on her own, like the fighter she is. Scarlett passed away in the arms of her mother. It was time to soak in every memory of Scarlett, time to celebrate her life.

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Family filled the room with love.

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I had the honor of singing Amazing Grace over sweet Scarlett. Helping to bathe her. Dressing her. Placing her beautiful bracelet made by Marlene (another wonderful SGM Volunteer). Taking her footprints and handprints.

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The journey of this family and these sisters, Scarlett and Vivienne, is a picture of weeping and rejoicing. The love that filled the room for every moment of Scarlett’s life and beyond was beautiful and sacred. That love is carried on in each of them and in the life of Vivienne. It was such an honor to walk with this family, to share in the miracle of the life of both of their daughters. And, to celebrate with them.

I was honored to sing Amazing Grace once more at Scarlett’s memorial service.

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“Scarlett and Vivienne’s birth was filled with much joy as we kept moving forward no matter how hard we wanted time to stand still some days. With out Sufficient Grace and the wonderful services, friendship and assistance offered to Travis and I, I know our road traveled would of been much harder to navigate. Thank you. That pain we felt at her passing, was eased as we instead turned grief into love in celebrating Scarlett’s life with us. You truly are one of God’s Angels.
Thank you,
Amanda”

*This story was shared by Kelly Gerken, SGM/SBD with the permission of the Travis family.
Maternity photos by Jessica Carpenter
SGM photos by Erin Foster
Cell phone pictures shared by the family of Scarlett and Vivienne

A Father’s Love ~ Baby Owen

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He stood beside his wife, feeding her ice chips, tenderly. Sometimes using humor to soften the heaviness of weary moments as they waited to meet their son. Because, if he can make her laugh…then all is still right with the world…even when nothing seems right at all. Humor is a wonderful diffuser for the most painful moments. A man who can make you laugh in any circumstance. That’s a treasure.

I know. I married a man with that priceless gift.

They planned every detail, as they waited for Owen’s arrival.

Beautiful outfits, a Cuddle Cot, how they would spend their time, what pictures they wanted captured, support through SGM.

I had the privilege of walking with them a bit, during the months of planning. As baby Owen’s mother labored. And, as he was welcomed earthside.

His mother planned every moment…beginning his legacy, even before his birth, through Owen’s Gift. I’ve never met a mother who was already planning a way to help others, while still walking her own agonizing and beautiful path as she soaked in the moments with her son.

As Owen’s heart slowed on the monitor before his delivery, it was his father’s hands searching along mother’s belly to find their son’s sweet last kicks. He took her hand and gently led her to the spot where they could feel their son’s goodbye together, as she clung tightly to her Comfort Bear.

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Owen’s father wanted to give him his bath. And, so he did.

His father helped us do the footprinting, and the foot molds. His father helped to dress him. Not only his mother, but his father held him lovingly in his strong arms….arms that protect and provide for those he loves.

A builder by trade and a problem solver by nature, he used ingenuity to help us maneuver the mementos and dressing time.

Both mother and father were able to parent in the sacred moments they spent with their son.

I am so in awe of their courage and strength…and most of all, the great beauty of their love. Love can sustain a family pushed beyond the brink more than once. Love can enable a father to stand and care for his tiny son, born silently. Love can help a mother plan for a brief life. Love can carry them both through the moments and years to come.

As we are often concerned with many mothers walking through loss, let us never forget the sacred love of a father…and the deep and real grief he carries in his strong daddy heart. Not all dads are able to stand so boldly in love and protection of their families, even speaking bold truth in moments when it is needed.

For the dads carrying this weight quietly, you are not alone. Your part in your child’s life and your family’s life are so important and valid….and so is your grief.

A poem shared in the Walking With You for Fathers Booklet:

It must be very difficult

To be a man in grief,
Since “men don’t cry”
and “men are strong”
No tears can bring relief.

It must be very difficult
To stand up to the test,
And field the calls and visitors
So she can get some rest.

They always ask if she’s all right
And what she’s going through.
But seldom take his hand and ask,
“My friend, but how are you?”

He hears her crying in the night
And thinks his heart will break.
He dries her tears and comforts her,
But “stays strong” for her sake.

It must be very difficult
To start each day anew.
And try to be so very brave-
He lost his baby too.

Eileen Knight Hagemeister

If you are a father walking through loss, and would like a copy of Walking With You for Fathers, please email sgm dot shipping at gmail dot com and we will send you a copy free of charge.

To request a Dreams of You package, click here. To learn more about birth and bereavement doula support or perinatal hospice services through SGM, click here.

*Photos by SGM/SBD Birth and Bereavement Doula and Remembrance Photographer, Kelly Gerken

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