Kimberly Dunn, Heartstrings Mother
Shemeka Fox, Heartstrings Mother
Shemeka L. Fox is a native of Sanford, NC and currently lives in Kernersville, NC. She is married to Jerron Fox, Sr. and works for the Administrative Office of the Courts. Shemeka is a 1998 graduate from Winston-Salem State University and holds a Master of Management in Public Administration from University of Phoenix. She is currently a doctoral candidate in the Management in Organizational Leadership program at University of Phoenix. Shemeka enjoys singing, dancing, listening to music, reading and spending quality time with her family.
Returning to work after losing a child is a difficult process, but returning after a miscarriage and/or fetal demise is tormenting. I had to return to work one week after my first loss at 7 weeks and pretend like I was perfectly fine. While on the inside I was torn apart and grieving the loss of my first child after trying to conceive for two years. Not too many people even knew I was expecting, but I wanted to tell the world that I was hurting, but I felt that they would not understand my pain. I was faced with so many insensitive comments and gestures from other coworkers who had been notified of my loss. Through this experience, I was surprised to learn how people can be so oblivious to the feelings of others. However, I later chalked it up to simple ignorance of grieving an infant.
I struggled with thoughts of sadness and withdrawal, but I made it through. Six months later I was pregnant again and went through the process smoothly. The office had planned a shower and was excited about the baby boy on the way. After a routine two week checkup, I was told that my baby did not make it, and my life changed drastically at that very moment. I drove myself to the hospital and was immediately prepped for delivery. The support I received was overwhelming while I was away from work. However, when I returned to work, I felt isolated and struggled with my feelings.
I wanted people to ask about my baby and they totally ignored the fact that I had given birth to a perfect 2 lb. 15 ounce baby boy at 28 weeks. Based on both of my experiences, I learned the importance of a workplace being prepared for situations such as early infant loss and stillborn deaths when employees return to work because of the sensitivity of the situation. This is a very serious problem that has been swept under the rug for years, but I would suggest that it is time for a change through awareness and education. The fact that early infant loss is a taboo topic gives everyone a reason to overlook these issues and pretend that everything should go back to normal. Unfortunately, that is the worst thing that people can do when dealing with grief especially within the workplace.
Resources are available to parents who experience this tragedy, but little is known about this until someone who has had the experience shares the information. I received outstanding support following my losses from Heartstrings, as well as grief counseling I received through a local hospice, but the word needs to get out more so that everyone has access to these wonderful services to gain hope for the future. Awareness is the key to hope and adjusting to your new normal as a parent who has experienced loss of a child. Therefore, employers should become more proactive by providing comfort to their employees simply by providing information, guidance, support, and understanding within the workplace.
Dei Angel, LPC, NCC, Heartstrings Board Member
Dei Angel has been a member of the Heartstrings Board of Directors since 2011. Dei is a
counselor in private practice at Angel Works Pediatric and Adult Counseling in
Kernersville. Her specialties include grief and loss difficulties with adults and children, as
well as, anxiety disorders and high functioning autism challenges.
A Grateful Heart
A writer once said that facing our death or the death of a loved one, teaches us to become
more grateful of life and look at the big picture. In my experience, when a loved one
dies, we lose a tolerance for day-to-day minutiae. We become increasingly unable to
“sweat the small stuff”. As a result, it becomes easier to focus on what is truly
meaningful in our lives. An attitude of gratitude is an important step of healing and
instilling hope in our hearts.
Therefore, I challenge you all to stay present when you are with your 2 legged AND four
legged loved ones. Do your best to absorb all of the moments that create our lives. Take
in all the sights, sounds, and scents of the season, staying mindful of the opportunity to
share them with those we love. Our active participation in living is a wonderful way to
honor the loved ones we have lost. If we approach each day with a grateful heart,
focusing on simple moments and experiences, we can renew purpose and meaning in our
Dei will be speaking at Heartstrings upcoming Living With Hope presentation on November 17, 2015 - "Hopeful Holidays - Balancing Joy and Grief” 6:00pm - 7:30pm at 2085 Frontis Plaza Boulevard, Winston-Salem, NC 27103 (Meeting Room #2). "Hopeful Holidays - Balancing Joy and Grief" will explore relevant topics that affect grieving families as they face the upcoming holiday season. This dynamic presentation will also allow opportunities for questions with our professional presenter specific to your experience, as well as connection with other grieving parents. This presentation is intended for adult participants who have experienced pregnancy, infant and child loss.
Register now for this free event by clicking here.
Heartstrings Walk Teams
This month we're shining a spotlight on some of our amazing Walk Teams who are raising funds, competing for fun prizes, and helping pay it forward to continue Heartstrings programs! There are almost 50 teams working towards these awesome goals, and we would love to shine a spotlight on all of them. If you set up a team and wish to have your team highlighted in the November Newsletter, please email Annie at email@example.com. And thank you so much to all who have spread the word and contributed! Team Fundraising Prizes will be awarded at the Walk for Remembrance & Hope based on totals as of 5pm Friday, October 9.
Team Captain & Mom- Amy McKinney
Team McKinney Angels
"We walk to honor not only Emma, Josh, Hallie-Lula and One-Half, but to honor all the children represented. We walk to raise awareness and to give back a small offering to an organization that gives so much to so many Piedmont families.
We walk because we love.
Go Team McKinney Angels!" - Amy
Team Captain: Amber Gordon
Team Vylet Skye
"My team I created in honor of my beautiful baby is team Vylet Skye. There are mostly family members on my team and a couple friends of family who all wanted to walk in remembrance and honor of our baby to show their support! My Vylet was born on February 12th, 2015 to me (Amber) and my husband Justin Gordon. We got to spend almost 6 wonderful and exciting weeks with her until she sadly had passed away from SIDS on march 25th, 2015. There are no words to even go about describing the pain we were left with after our vylet was taken from us so sudden! I am so happy to be able to be apart of heartstrings and participate in the fundraising and the walk. I want to do anything possible to show recognition and honor my baby and this is an opportunity for me to do that. I vow to always keep Vylet's memory alive! We love you our beautiful baby girl!" - Amber
Team Captain: Ty Jackson
Team T.A. Angels
"I am Ty Jackson, my children our Trenton, Trinity, and Tahira. All my children have a middle name that starts with “A” which is why our team is called the T.A. Angels. What you don't know about our team is the support we have received from Heartstrings has caused us to spread that support to others…even those who have not experienced a lost. So every month on the 13th (Tahira’s date) the T.A. Angels pay kindness to someone else. We call it “Tahira’s Favor of Kindness”, sometimes anonymously, sometimes announced, always with love . This has become a monthly family tradition, one that has helped in our healing, brought us closer together, and all motivated by our littlest team member." - Ty
Natosha Lambeth, MSW, Facilitator
Natosha Lambeth has been a Heartstrings Facilitator since 2013. She worked in child welfare and has investigated Child Abuse and Neglect for 11 years. She has also worked with adults diagnosed with Multiple Sclerosis. She discusses how paying it forward helps in the healing process.
In January 2007, I experienced the loss of a child through miscarriage. At that time, I didn't know anyone else who had experienced pregnancy loss. My doctor brushed it off and said it happens all the time and even if I miscarried 3 more times, there would still be no cause for concern. The doctor’s indifference really upset me but I wanted nothing more than to have a child. Later that year, I became pregnant again. While a new pregnancy brought some happiness and relief, it also brought so much anxiety and fear.
Eventually, I sought treatment through individual counseling and medication and worked through much of the grief. Then in 2013, a colleague introduced me to Heartstrings. Heartstrings was looking for a facilitator for one of its upcoming Pregnancy and Infant Loss Support Groups and I knew immediately that I wanted to be a part of it. With each group I facilitate, I continue to heal, even when I have thought there was no more healing needed. Since being introduced to Heartstrings, I have found a lot of healing in becoming involved in other activities as well. Last year, I volunteered at the Walk for Remembrance and Hope. The event was incredible and I will volunteer again this year. In August, I had the opportunity to help with group activities for the Circle of Hope. Each event is an opportunity to learn from others, meet others who understand, and share my story too.
Through these opportunities with Heartstrings, I have met many amazing and strong people, people who understand where I have been and where I am now. Every program and event provides an opportunity to continue meeting others who have experienced the loss of a child and who understand the long road to healing. Through Heartstrings, I am able to stay connected with others who get it.
Many studies have been conducted regarding the benefits of volunteering and have found there are both physical and psychological benefits. Through volunteering, you will find new friends, friends who know and understand. Volunteering opens doors to stay in contact with others and helps you build a support system, which may lead to less loneliness and depression. It may also increase your energy and activity level, which encourages better nutrition and exercise. It may also reduce stress, leading to lower blood pressure. You may learn new skills or have opportunities to practice current skills. These new and improved skills may lead to new job opportunities, including promotions or a new position in a field you love. Of course, with all of these benefits, one can’t help but have an improved self-esteem.
Through volunteering your time and energy, you can make a positive difference and pursue personal interests. It is an opportunity to honor your child while also helping others in your community. There are many ways people have given their time, creativity and energy. Some have given through remembrance photography, scholarships, writing or blogging, and making crafts such as remembrance stones, stuffed animals, blankets, etc.
Every single person has something to give. Some may prefer to be out front while others prefer behind the scenes. No matter your preference, Heartstrings offers many opportunities to pay it forward, through support groups, connections matches, administrative assistance, and of course community events, like the upcoming Walk for Remembrance and Hope.
Leslie Miller, Support Group Facilitator
Leslie Miller is a facilitator with the Heartstrings Support Groups. She first began working with Heartstrings around 2009 and was blown away by how powerful these groups are and the transformations she sees for families. Most of her work as a counselor centers around children: she worked as a School Counselor for 5 years and now is a Children’s Bereavement Counselor in Greensboro. She shares with us today thoughts on how to support living siblings after the loss of a child.
For parents experiencing the death of a baby, this is the most difficult time of their lives. Fortunately, the support and skills gained through Heartstrings is a lifeline and a place to find understanding and hope. However, families with children may be wondering how to support their other children during such a difficult time. The child is also mourning the loss of their baby sibling.
For many families experiencing a loss, it is difficult to know how their children understand what has happened. Depending on a child’s developmental level, their understanding of loss can be very different from that of an adult. For example, young children may continue to ask where the baby is and why this happened. Younger children may think that their sibling can come back; many kids say they want to visit their sibling in Heaven. These comments and questions can be really hard for a grieving parent to answer, but they reflect that the child is trying to understand what has happened. To really understand, children often have to be told repeatedly since they are testing to see if their belief is true. It is important to answer their questions with honesty, but it is okay to use child friendly language.
To help support siblings as they grieve, it is important to do our best to keep the family structure and schedule stable. In other words, let parents be the adults and the children be kids. When children grieve, they may be more emotional in general, have many questions, and feel frightened that other deaths may occur. These are typical reactions. It is also normal that at other times, your child may act like nothing has happened. This doesn’t mean that children are oblivious or don’t care, it is simply how their brains work.
It is also important for children to be included in activities that honor your baby such as funerals, memorials, and other events; unless they do not want to attend. Many times, we have an impulse to protect children but it can be very healing for children to be included on saying good-bye or “we remember and miss you” to their siblings.
Since you are grieving yourself, don’t be shy to ask others (like extended family and friends) to step in to give extra support and attention to your other children, allowing them times to be silly and be a kid. If you see changes in your child that are serious or linger such as emotional problems, failing grades, changes in behavior, nightmares, anxieties, etc you may want to consider bereavement counseling for your child. That is a place where they can learn about loss, how to understand it, how to cope with tough feelings and how to still feel connected to their sibling that they lost.
Above all, if you are a parent, grieving the loss of a baby and also raising children, be kind and gentle to yourself. Don’t be afraid to ask for help so that each member of your family can get the level of support they need in such a difficult time.
Heartstrings staff is always here to help. Contact Cheri at firstname.lastname@example.org with any questions or needs you may have.
ANNIE Vorys, DIRECTOR OF Advancement
Annie Vorys came to Heartstrings as a support group participant in 2012, following the stillbirth of her son, Carpenter. She began volunteering however she could, ending up serving as event planner for the Walk for Remembrance & Hope that same year. After delivering her rainbow son, she was invited to join the Heartstrings staff as Director of Advancement. She discusses one of her favorite projects to date below.
In 2013, Heartstrings changed a lot. Over that summer, Executive Director Ashley Wall found herself needing new staff after long-time supporters Mary Schultz and Mary Easton found themselves moving in other directions. I was excited to be brought on board, and with the new Director of Support Services, Cheri Timmons, the new Heartstrings staff was formed.
Around the office, we have a tongue-in-cheek way of saying that in these past two years, we’ve tripled the number of programs with our part-time staff of three. With Ashley’s leadership, we have gone in directions uncharted in previous years, and are bringing Heartstrings to families in need in unprecedented ways. Expansion of services to parents of older children, speaker series, and training of medical professionals in bereavement care have increased the impact of Heartstrings across the Triad and beyond.
Ask me during any given month and I may have a different answer to “What’s your favorite Heartstrings program?” But over the past three months, I’ve been consistent with my answer. I am proud and excited to be putting the final touches on Heartstrings H.O.P.E.
Heartstrings H.O.P.E., or “Helping Others through Personal Experience” is a series of brochures and videos intended to be given to parents by the hospital or doctor’s office immediately following a fatal diagnosis or child’s death. This series created by Heartstrings includes interviews and direct quotes from families who have gone through a Heartstrings program.
The first in this series, “Heartbroken & Bewildered” focuses on the questions parents find themselves answering after the loss of a baby to stillbirth or neonatal death. The goal of this package is to take some of these questions and provide parents with the voice of experience. Imagine sitting in the hospital, faced with making funeral arrangements, or deciding on whether or not to take pictures. Words from a parent who has been in your shoes would be invaluable.
Over the past few months I have gathered responses from parents for a brochure and we have filmed an expanded version of their answers. By the end of this month, we will be ready to deliver this package to subscribing area hospitals. In six months’ time, we’ll be ready to roll out our next package in the series covering earlier losses called “Promises Lost”.
H.O.P.E. is marking a new era for Heartstrings programs. For more than a decade, we have helped families in our support groups, well after they left the hospital. In 2013, we began training medical professionals in how to care for the bereaved through programs like Heartstrings Heroes and Practicing Hope. Now we will be able to give the most intimate support to families in the hospital room, sharing options that will help ease those difficult decisions.
I remember sitting in my hospital bed, faced with too many questions we'd never considered. I answered the best I could, but now I know I could have done better. Through Heartstrings H.O.P.E., I strive to do better for parents like myself in the future. Back when I joined Heartstrings, I never imagined being able to make a difference for families in this crucial situation. Now, with our amazing Heartstrings community of staff and volunteers, I know that we can make a difference. Together we are changing the impact of loss in our community and beyond.
Interested in supporting programs like Heartstrings H.O.P.E.? The greatest needs right now are donors and volunteers. Click here to donate in honor or memory of a loved one, and click here to sign up to help. Thank you.
Mike Vorys, Co-facilitator & Support Parent
Mike, a bereaved Heartstrings dad, shares his story in his own words:
My name is Mike Vorys. I am a loss dad. 3 years ago, our first born son was taken from us at 23 weeks 6 days gestation. His name was John Carpenter Vorys II. Since then, I've gone through the Heartstrings support program and, with my wife, Annie, have been involved with Heartstrings as a co-facilitator to support groups, a Connections partner, and have assisted with the annual Heartstrings Walk of Remembrance & Hope. Why? So other dads might get a small glimmer of hope.
Growing up, I was raised in a pretty typical household. Dad, 70 years old this year, was, and always has been, a "man's man." In the house he grew up in, men didn't cry. While he never told me I couldn't cry, I only saw him cry twice during the 22 years I lived in his house. I grew up thinking not that men couldn't cry, but that they shouldn't cry.
Quite frankly, society never did anything to dissuade me of that notion. All the male leads in TV shows, books, and movies that I enjoyed were the "tough guy" type that never shed one tear. It's not that I blame society or anyone else, for that matter. Anthropologically, women tend to look for a mate in someone that is strong and seen as a protector. The "macho" type. The type that doesn't show emotion.
When we lost Carpenter, all I could think about was shielding my wife and daughter from the immense hurt. Luckily (if you want to look at it that way) our daughter was only 7 months old when her little brother passed. So, I could focus my attention and efforts on being there for Annie. Whenever our time wasn't consumed by sleep, work, or taking care of our daughter, we weren't distracted anymore and our grief consumed us.
Since I was still in "shield Annie" mode, I would push my personal grief to the side to make certain that her needs were handled. All the while, I thought I was doing the right thing. The "manly" thing. That's not to say that I never cried. I did. I sobbed. I would go to a place where I thought Annie couldn't see me and I would cry. I would sob. I would throw the heaviest object I could find. I would lash out. I would get it all out of my system so that when I went back to Annie, I wasn't "bothering" her with my feelings.
And so it went. Day after day, night after night. Until, finally, Annie lost it on me, and rightly so. She screamed at me telling me that she didn't know how I felt because I never told her. She said that she felt alone because I was the only person she could talk to about losing her child. The only other person she knew that lost a child. The only other person that had an inkling of what she was going through.
I maintained that I did not know completely what she was going through because she was the one actually carrying Carpenter. She said she needed someone to talk to someone who knew what it was like to bury a child.
Enter Heartstrings. We both went. Wow. Am I glad I did that. I met other dads who had buried a child, other couples going through the same torture. I learned all sorts of things about processing my grief. Among them were two very important lessons: first, there's not a right way to grieve; there's YOUR way. Second, as long as you are not having feelings of hurting yourself or others, every feeling is acceptable.
Rage. Sadness. Guilt. Desperation. Anger. Denial. Sorrow. Even happiness. Yes, I even went through happiness knowing, according to my belief system, Carpenter was already in heaven. Through the support group, I learned that all of these emotions are completely normal in finding your new normal. Through the support group, I learned that society is wrong—it’s ok for guys to show emotion, ok to let down the "machismo" attitude, ok to cry.
Walk for Remembrance & Hope Committee
Amy McKinney, Kendrah Kidd, Lauren Martin, Sahirah Hobes, and Erica Palmer make up the amazing team planning this year's 11th Annual Walk for Remembrance & Hope on October 10 at Triad Park. These Heartstrings mothers volunteer countless hours to multiple projects to spread hope to other families like theirs. We are proud to recognize their service. This month, these ladies share with us their thoughts on a very sensitive topic for many mothers.
"How do you celebrate Mother's Day?"
Erica - "Mother's Day is complicated for me, as it is for many of us. I am a daughter, granddaughter, step-mother, and loss mom. I honor and celebrate my mother and grandmothers on this day, yet I am keenly aware of the gaping hole left in my life and in all of our lives by the death of my children. This year, my teenage step-children will navigate their first Mother's Day after the death of their mother and my grandmother will pass her first Mother's Day after the death of her only son. This day of honor and celebration for all that it means to be a mother cuts deeply for some of us. For our family, Mother's Day this year will be much like it is each year: low-key, with some smiles and laughter and some tears, with some joy and some sorrow. I will choose again not to attend the Mother's Day sermon at church as an act of self-care, and I will not dwell too much upon the holiday. I will honor the memories of my children, I will celebrate all of the wonderful mothers in my life, and I will hold in heart those who struggle with this day. May we all find peace this Mother's Day and each day. "
Sahirah - "My husband and I usually try to go to GA to visit our mothers on Mothers Day Weekend. I was pregnant on Mother's Day last year, so I got to enjoy the "perks" of the special day with gifts, cards, and pampering. I don't even want to celebrate it this year..."
Amy - "As a loss parent, Mother’s Day can be a rather bittersweet day. For many who have living children, I imagine the “sweet” wins out. However, for me it is a rather bitter day. I have known since I was a young girl that I wanted to be a mom. Playing with the babies in the nursery and hanging out with my nephews were some of my favorite moments as a child. I even had my little girls name picked out from about the age of thirteen. I found out I was pregnant the weekend of Fathers Day in 2008 and I was so excited to share the news with my husband, but I just kept thinking about how special the following Mother’s Day would be. I imagined the twin boy and girl I would be hold in my arms. I imagined their smiling faces and the little matching outfits I would put them in for church. But, instead May rolled around and I was the mother of two angels instead of two living children. The day was filled with anguish and hurt. And even now, so many years later, the sting of Mothers Day is always quite tough. I could go to church and put myself through the long list of “It’s ok, you are still a mom”, or the pity hugs and tears from parents who have no idea how I feel, or hearing my least favorite comment, “Once you stop trying it will happen.” Because, the truth is, we do not all get to live this life with our children. It may not happen. That is a reality I have accepted, but it does not mean it is an easy pill to swallow. It also means that I do not want to be around other women as they celebrate getting to have everything I have ever wanted. So, instead, I focus on my Mom; who is pretty spectacular. We usually have lunch and spend the day together doing whatever she wants. She always gets me a Mother’s Day card and a great big hug as well. We have even been known to share a few tears for the children I miss and the grandchildren she loves. I try to focus on how blessed I am to have my mother as my best friend and to have had the weeks I did with my children on this earth. Thanks Emma & Josh for being my precious babies. Until I hold you again… Love you always and forever."
Lauren - "In many ways, Mother’s Day is the cruelest of holidays. If you are a loss mom, have lost your own mother, never knew your mother, have a very sick mother, etc., it is a holiday that hurts. At the very least for me, it is bittersweet. I think the day has the best of intentions as being a mom is the hardest job in the world and should be celebrated. But it helps to be real and recognize ALL types of moms. My first mother’s day after I lost my daughter, Isabel, I thought I was strong and could get through it without having to adjust anything. Big mistake. We went to brunch to celebrate my mother-in-law whom I love dearly (seriously, I really do). That brunch was one of the hardest meals I have ever sat through. Watching all the moms with their beautiful families. The chubby bouncing babies. So cute and so not mine. Oh the anger I had for those moms and their families. The anger I had for my husband for making me endure this brunch. But what misplaced anger. I know my husband was hurting as well. And you can’t not celebrate other mothers in your life. Especially your MIL. And those other moms at brunch; I don’t know them. I don’t know if they have struggled with pregnancy or infant loss. I don’t know if they struggled with infertility. I don’t know. If there is one thing losing my daughter has taught me, it is that I don’t know other people’s struggles. It’s not something we wear on our sleeves. It has now been almost five years since my loss and I now have two rainbow babies. What will we do on the big “M” day? I am now okay with celebrating. I am okay with going to brunch. But I do wish someone other than me will say her name. Because to say her name is to recognize her existence. I am the mother of three, not two. So this Mother’s Day, I will celebrate the other mothers in my life as well as with my own family. I will also find time to thank Isabel for being the first one to make me a mother and I will probably cry. A lot. And that is okay."
Kendrah - "Before becoming a mother myself, Mother's Day was a day that I got flowers for the women in my life: my mother, grandmother, and great-aunt. I would call for a quick "Happy Mother's Day!", or sometimes make a visit home, it was simple and nice. My first Mother's Day after becoming a mom, I was 30 weeks along with our son, Osmund, who had been diagnosed with a 50% chance of survival. We had so much hope. We just "knew" we would defy and beat the odds. I never believed that the following year I would be spending Mother's Day at his graveside, cleaning his stone and placing fresh flowers in his vase. No chubby baby, no hand print craft, nothing to hold but framed pictures, blankets, and memories. This will be my sixth Mother's Day. I now have two beautiful children to celebrate. I cherish the crumpled wildflowers and hand print crafts, and the hugs, the wonderful weight of their hugs. This does not negate the sadness and longing I feel, the space that will forever be there for our first son and our third baby lost at 12 weeks. This year, as has become our simple tradition, we will go to visit their brother's grave, take him flowers, then go someplace quiet with a beautiful view and just be together."
Mother's and Father's Day are the topic of the upcoming Living With Hope Presentation on May 4. To register for this free event, click here. The Walk for Remembrance & Hope Committee is now looking for corporate partners to sponsor this powerful outreach event. For more information, please email Annie at email@example.com.
Cheri Timmons, LCSW, CEAP
Cheri Timmons is an LCSW, CEAP, working as Director of Support Services with Heartstrings. She has worked in the mental health field for over 20 years helping adults, families and children. She seeks to support other parents on their journey towards healing and hope. She lives in Greensboro, NC and finds each day a wonderful adventure with her husband and 6 year old son.
“Navigating Murky Waters – The Challenges of Ending a Wanted Pregnancy”
For the past 10 years, Heartstrings has provided support to parents who have lost a pregnancy or an infant. These bewildering experiences of grief are so difficult to navigate, as these losses are so sudden and unexpected. Pregnancy and infant loss at its core can create feelings of isolation and intense pain.
For some expectant parents, they receive a severe prenatal or maternal diagnosis during their pregnancy and are faced with the insurmountable decision of whether to continue their pregnancy, heightening risk to fetus and/or mother or to terminate their pregnancy that they want so much. There tends to be very little societal acceptance for parents who have made the decision to end their pregnancy due to medical reasons, leaving most parents to deal with their grief alone.
Our purpose in writing this piece is to provide more awareness of this type of pregnancy loss (frequently termed “A Heartbreaking Choice” or “AHC”), in the hopes that parents who have undergone a similar loss feel less alone, less isolated, better understood and supported in their grief.
Faced with Difficult Decisions
Congenital brain defects, such as Agenesis of the Corpus Callosum, Anencephaly or Hydrocephalus; congenital heart defects, including Hypoplastic Left Heart Syndrome; Thanatophoric Dysplasia; Trisomy 13, 18 or 21, Triploidy and many, many more are the incomprehensible and disorienting words numerous parents hear from their doctors and genetic counselors during their pregnancy. As parents struggle to understand exactly what these medical conditions are, as well as what this means for the viability of their baby (and for some the survivability of the mother), they are also confronted with the decision of which path to take.
These parents are faced with the excruciating decision of whether or not to stop a much-wanted and oftentimes much-planned pregnancy. Only the parents themselves can determine what is right for their baby, themselves and their family. Although there is very little support from the larger society for parents who make this decision, which can contribute to increased feelings of isolation along their grief journey, below unique aspects of this type of grief are acknowledged and ideas are offered on how to talk with others.
Tidal Waves of Grief Reactions
For all types of pregnancy loss, expected and unexpected, a myriad of grief reactions are experienced. The hopes, dreams and expectations that parents develop once they learn they are expecting, are lost along with the sweet baby they loved from the start. Each parent’s grief reactions are unique to their own loss and include physical, cognitive, emotional, behavioral and spiritual responses.
Physical grief reactions: Fatigue, physical aching to hold your baby, change in appetite, change in sleep (sleeping more or trouble sleeping), headache, stomachache, joint/muscle pain, rapid heart rate, constipation or diarrhea, excessive sweating, dry mouth.
Cognitive grief reactions: Trouble concentrating, confusion, poor short-term memory, difficulty thinking clearly or making decisions, poor reading comprehension, wrong words come out, dreams or intrusive thoughts about your baby and experience.
Emotional grief reactions: Shock, disbelief, anxiety, anger, guilt, numbness, denial, searching/yearning, blame, regret, depression, embarrassment, irritability, helplessness, sadness, jealousy, emptiness, resentment, feeling broken/inferior, loneliness, relief, frustration.
Behavioral grief reactions: Overactivity (working/keeping busy all the time), taking feelings out on others, blaming others, second guessing your decision, withdrawing from others, acting as if death did not occur, refusing to talk about baby’s death, self-medicating with drugs or alcohol.
Spiritual grief reactions: Blaming God (or your higher power), questioning God for allowing this to happen to you and your baby, moving closer to God for strength, distancing yourself from your God, praying for peace or guidance, asking others to pray for you at this difficult time.
For parents who have ended their pregnancy due to poor/fatal prenatal diagnosis, serious maternal health complications, or for the health of another fetus (selective reduction), these reactions may also include:
A mother still feeling the baby’s “kicks” or “hearing” the baby’s cries. During the post-partum period, a mother’s milk comes in, adding a unique aspect of grief – her body still acts as though her baby is living. This experience is also true for mothers who have experienced late term stillbirth loss.
Fathers or partners may feel very helpless and overwhelmed by the intensity of reactions the mother is experiencing. Intensity in her emotions is also impacted by the still present hormones of pregnancy and post-partum. (It is important to note that hormonal balance may not occur until after 3 months post-partum for some mothers.)
Managing Response to Reactions of Others
In the child loss community, it is common for parents to pick and choose how and with whom they share that their child has died. Responding to innocent questions such as, “How many children do you have?” can elicit such intense, overwhelming emotions in moms and dads. Many parents want and need to tell their story over and over. This not only facilitates the natural healing process, but also empowers parents to remember and honor their baby to the larger community.
Parents who are grieving need compassion, understanding and support. The unthinkable has happened for them and they struggle to navigate this unknown path. Many receive warmth, understanding and acceptance for loss of their baby in light of the heartbreaking choice they made. However, some responses to a parent’s decision to end a wanted pregnancy may be filled with judgement, distance or a lack of understanding. These types of reactions from close friends, family or others in the community may lead to increased isolation and pain for grieving parents at a time when they need the most support and understanding.
Where to Turn for Support
Heartstrings offers peer support for parents who have had a pregnancy termination for fetal or maternal indications. Parents can request a Connections match for one-to-one peer support with another parent who has had a similar loss experience. Connections matches are arranged for a 3-month period and our Connections Support Parents offer compassion, understanding and insight into how to navigate these murky waters.
Heartstrings can also arrange for a specific support group, unique to parents who have lost their baby through ending a wanted pregnancy. These groups are arranged on an as-needed basis and focus on providing specific grief education; self-care instruction; connection with other parents who have experienced this similar type of loss; support, understanding and compassion for their loss; and a safe place where parents can share their story, talk about and honor the life of their babies.
These distinctive groups only include parents who have experienced pregnancy loss due to pregnancy termination for fetal or maternal indications. If you are interested in learning more about this type of peer support available, please contact Cheri Timmons, Director of Support Services, at 336-335-9931 or firstname.lastname@example.org.
This article is intended to raise awareness of the challenges parents face when deciding to end a wanted pregnancy for fetal or maternal indications and acknowledge the support that they need. It is not an exhaustive article and additional informational resources are provided below:
Termination for Medical Reasons Group on Babycenter US
Termination for Medical Reasons Group on BabyCentre UK
Katherine Hill-Oppel, M. Ed.
Katherine Hill-Oppel has been a volunteer for Heartstrings since 2006 and is a Trained Support Group Facilitator and Connections Support Parent. She generously shares her time and talent with our families through facilitating the Write From The Heart Writing Workshop for Bereaved Parents. You can register for the next workshop on April 18 by clicking here.
Journaling to Heal
In 2005 my husband and I lost two sons, in separate pregnancies. It was a devastating time for us. We had suffered from infertility, and had been thrilled to find out we were pregnant. Unfortunately, as you know, being pregnant does not equate necessarily with having a live child.
We were now part of a group that we never expected. Being a bereaved parent started us on a journey that continues to this day. I can remember standing in my living room, staring at the walls, wondering how in the world I could survive this tragedy. In the beginning, my grief journey started in a deep, dark, seemingly never-ending hole.
Heartstrings gave us a lifeline and a chance to know that we were not alone. The group process was hard but so rewarding. However, the grief group is just the start of the healing path.
In graduate school, I studied the grief charts and theories. I was able to abstractly understand the steps involved in the most basic, elementary way. We have all heard them: shock, anger, denial and bargaining, acceptance, etc. The charts are a tidy way to show how the process may work, but in reality grieving is anything but neat and tidy.
For me, it was like being in a leaky boat, in deep water during a hurricane. I’d bail as fast as I could to stay afloat, but then a huge wave would come over the bow and ruin any progress I had made. Healing seemed so far away, and I was already exhausted.
There are no easy answers, or pathways in this journey and it’s as individual as each person. However, there are ways to help you cope with your grief such as taking part in a grief support group and/or doing individual counseling. I have found, like many other bereaved parents, that writing about my grief journey has helped tremendously. When I have suggested starting a journal to others, many times people will tell me, “but I’m not a good writer.” or “I don’t know where to start.”.
As with many things in life, writing is all about the process regardless of the end result. The first step is usually the hardest…sitting down and devoting 10 minutes to writing your thoughts on a page. There doesn’t need to be an “agenda” or even a directed point, just write about what you are feeling at that moment. Don’t worry about having perfect grammar or correct spelling. Just write and follow your stream of consciousness. You don’t have to share your work, or even look at it again. Allow yourself the freedom of putting your invisible thoughts into something more tangible.
As you get used to making a habit of writing, you can then better direct that process into what gives you relief. People have shared with me that writing has given them an outlet that they wouldn’t have had otherwise. One bereaved parent said she spent several days writing letters to loved ones, her doctors and her baby. She was able to pour out her feelings in each letter, even the feelings she was afraid of such as anger or guilt. Afterwards, she took each letter and burned it. The ashes of the burnt letters were symbolic to her as a milestone where she could work on moving past those feelings towards healing.
Sometimes having a writing assignment can help people who aren’t sure where to begin. A sentence prompt can be a way to get your thoughts in order initially. Prompts such as:
- How are you feeling right now in this moment?
- My biggest regret is….
- Where do I want to be in 1 year?
- I feel happy when I am…..
- My biggest supporter is…..
Try to answer the prompt but give yourself lots of leeway to just “go with it”. You may end up writing about a totally different topic. Your writing may surprise you. Again, focus on the process and don’t worry about the finished product. Unless you plan on publishing your work, you don’t need to bother about editing. There is a raw power in stream of consciousness writing. So consider adding writing into your pocket of supportive processes. This is your grief journey, and an opportunity to reflect and grow.
You can read some of Katherine’s work at her Wordpress blog: grief journey to hope.
Daniel P. Hall, MA, LPCA, NCC, Facilitator and Board Member
Heartstrings Facilitator and Board Member Daniel Hall writes about the ways losing a child can affect romantic relationships, and concrete ideas to help you grow and heal together.
Healing As A Couple
The butterflies of newfound love. The euphoric beginnings of romance. At the beginning of new relationships, we may not have thought ahead to difficult times and how our romantic partners would share in those experiences. The partners we chose to share our lives with and the relationships we have with them can be shown in a new light and take on new meaning during these difficult times. All relationships require a combination of individual and collaborative work to maintain or improve the quality of the connection between two people. During challenging, sad, and stressful times, the work that needs to be done can seem especially daunting. When a couple suffers the loss of a child, the grief that follows can be a potent combination of emotions that has the potential to both bring couples closer together or create distance within a relationship. Grief has a funny way of changing relationships. With intention and awareness, couples can navigate these changes to add depth and quality to their relationships, and ultimately enhance the quality of life for both partners. Here are a few things to remember while navigating difficult times as a couple:
- Try to recognize what you are thinking and feeling and find some way to communicate that to your partner on a consistent basis. Not knowing how your partner is feeling can be one of the strongest contributing factors to feeling alone and distant within a relationship. Be intentional about finding some way to communicate your thoughts and emotions, whatever they may be, to your significant other. If it is difficult for you to verbalize your experience, try writing it down and letting your partner read it. The simple fact that you communicate things within a relationship matters much more than how eloquently you are able to say or write it.
- Respect differences that may exist in the grieving process. Grieving holds the unique position of being one of the most universal life experiences, yet each individual’s experience of grief is distinctly unique. There are common themes across experiences, such as sadness, anger, struggling to find a new normal, and many others. However, each individual experiences these emotions in unique ways that can lead to feelings of isolation. Even when individuals are experiencing similar emotions or thoughts within a romantic relationship, the differences in their unique experiences can cause tension, resentment, and anger. The follow-up to having open communication within a relationship is developing an intentional appreciation for the differences that exist between partners. This means not expecting or trying to force your partner to conform to your own emotional experience, which is difficult. Empathy, putting yourself in someone else’s shoes, takes practice and is not always a natural or easy thing to do, especially when you are going through a difficult emotional experience yourself. Developing an empathetic understanding and acceptance of your partner’s experience can be a major tool in working on your relationship.
- While it is all hard, it doesn’t have to be all bad. Suffering the loss of a child is always hard, both as a couple and as individuals. There is no way around the grief and the only way through it is a difficult one. However, what research and personal experience have shown us is that relationships are often forged to a new level of strength when put in the fires of grief. Couples that experience the loss of children have to rely on each other and heal in ways that many couples may never understand. Within the difficult experiences are opportunities to come closer together and understand one another in new and fulfilling ways.
Let’s face it, implementing these things is not easy. Even the most intentional and dedicated of individuals and relationships are going to have times where things just don’t feel like we want them to. When a couple faces the devastation of losing a child, the difficult times can be in plentiful supply. However, going through difficult times does not mean that relationships have to be difficult themselves. With dedication, intention, and love, couples can build strength and support each other as they navigate life together.
Heather Burress, BSW, Facilitator
Heartstrings Facilitator Heather Burress writes about how she joined Heartstrings and came to lead Pregnancy & Infant Loss Support groups. She walks through details about the group which demonstrate the unique approach of Heartstrings to restoring hope for grieving parents.
Heartstrings will always hold an important place in my life. I first learned about Heartstrings from my obstetrician in 2006 following the miscarriage of my first baby, Aran. My husband, Tim, and I participated in the Support Group Heartstrings offered soon after our loss, an experience that played a significant role in our healing process. Later that year, I became involved with Heartstrings as a Connections Support Parent volunteer and also joined the staff as Heartstrings’ Program Coordinator. I began facilitating the Greensboro Support Groups in 2012, something, as a Social Worker myself, I’d been eager to do since the group Tim and I had been a part of had such an impact on us.
It is a profound honor to have the chance to walk with grieving parents in the Support Group setting. Witnessing the parents’ transformation from despair to a sense of hope within a few short months is extraordinary. It is very powerful to watch these moms and dads support, encourage and validate each other during their time together and I’m often moved to tears as I see the way they support and ‘companion’ each other.
Groups are open to parents whose babies have died from conception to one year of age. Although circumstances that have resulted in the loss of each baby may vary greatly between families, the grief that parents experience and the ways people respond to their loss are very similar. Each group session allows parents time to talk with each other while facilitators provide some guidance that aids in educating parents about what to expect as they grieve.
It takes a tremendous amount of courage for parents to attend a Pregnancy and Infant Loss Support Group. Entering a roomful of strangers while living in the aftermath of the death of a baby can be very stressful for a grieving parent. Sometimes parents feel as though they have made some progress toward healing but after attending the first group session decide not to return because of the feelings that resurface as parents begin to share about their babies. I urge parents to return for the second session, even if feels too overwhelming. Moms and Dads who take the time to acknowledge and experience their pain and to connect with others walking through similar circumstances are allowing themselves an opportunity to thoroughly mourn and remember their child. As parents express their anger, tears, exhaustion or numbness within the group they are, in essence, cleansing a wound and allowing it a chance to heal.
It is so important for grieving parents to be able to talk about their babies and to have opportunities to share their story many times with people they trust. Often times friends and family feel awkward looking at photos of a stillborn child or may be not know what to say to a grieving mom or dad. Offering parents the chance to honor the story of their baby in several different ways throughout the eight group sessions, through letter writing, telling their story, sharing a special physical memory item and creating a memorial art piece in honor of their baby allows parents the space, and time to mourn, honor and celebrate their child. Parents who are able to take the time to experience the pain and reality of the loss of their child and to have many opportunities to freely express their love and longing for their baby are more likely to be able to continue on as whole, healthy—albeit changed—people.
There is something powerfully healing about the opportunity to share stories and form relationships with others who are experiencing a similar loss. Many times Support Group members become friends and remain a significant source of support for each other through subsequent pregnancies. Facilitating Heartstrings Support Groups is one of the richest experiences I’ve had as a Social Work professional. And as a mother who has experienced a pregnancy loss it gives me a chance to give back to the organization and the program that has had such a profound impact on my own life.
To find out more information about how you can join a Heartstrings Pregnancy & Infant Loss Support Group, click here.
To support our mission through financial donation, click here.
1Schwiebert, Pat, RN. Strong and Tender, Grief Watch 2007.