The First Anniversary of Your Baby’s Death

By Monica Novak -

From Open to Hope ‘Ask the Authors’

Deborah writes in: Infant grandson passed away on the day of his birth, anniversary is coming, do you have any suggestions on how to celebrate this day, mom and dad are sooo sad.
Thank you for your help.

Response to Deborah:

Dear Deborah,

I am so very sorry for the loss of your grandson.  The year following the death of a baby takes a family through such a wide range of emotions, often culminating on the first anniversary of that death (or on what would be the baby’s first birthday if the baby lived a short time), that it can be difficult to decide how to spend the day.  There are many ways to celebrate the baby’s life and make it a special remembrance, and the key is finding what feels right for your family.  If there are other living children in this family, a fun activity could be planned with them in mind.  If not, I would suggest the parents find something enjoyable to do together or with other family and friends who will understand their sadness and provide support while offering love and upliftment at the same time.

When the first anniversary of my stillborn daughter Miranda’s death came around, I felt I should do something, but didn’t know what.  Because Miranda had been cremated, we didn’t have a cemetery to visit.  My mom remembered it was Miranda’s day and called to invite me and my 2-year-old daughter to the beach for the day.  I sat in the sand and wrote a letter to Miranda pouring out my feelings.  That night, after looking through Miranda’s memory book together, I put a candle in a cupcake and my husband, daughter, and I sang Happy Birthday to her.  It was a nice way to enjoy the day, while still remembering the importance of it.  And I so deeply appreciated every card or phone call that came from other family and friends to let me know they remembered Miranda too.

Friends from my support group celebrated in various ways.  One family had a meal at a restaurant down the street that had given them balloons one year earlier to release at their son’s funeral.  Some made special trips to the cemetery where their babies were buried, either taking flowers or releasing balloons.  One family took cupcakes to share with medical staff who had cared for their baby.  Another family donated three tape recorders to the NICU where their triplet babies had lived and died, so the staff could play music for other sick infants.

Some families light a candle and let it burn all day.  A wonderful way to commemorate and honor the baby’s life is to plant a tree or flowering shrub.  My dear friend Cathi Lammert of the Share organization spent the first anniversary of her son Christopher’s death gathering with family at a church Mass in honor of their son, followed by a brunch at their home.  They were given the gift of a small blue spruce which became their symbol of Christopher every day.  The tree became such an important part of their lives, that when they moved five years later, they had the tree moved to their new home just in time to decorate it for the Christmas season.

It’s okay to spend a quiet day in reflection, and it’s okay to invite family and friends to share in a celebration of your grandson’s life.  What you choose this year might become an annual tradition, or you might find that in time, the remembrance will evolve into something else.  On the anniversary days that followed the first year, as the intense grief subsided, my support group friends and I sometimes gathered at someone’s home for wine and dessert, or held cemetery picnics with food, games for the kids, and a balloon release.

It’s important for the parents to give themselves permission to treat themselves with care on this special day, taking the day off of work if possible, and doing something that allows them to treasure the gift of their son’s life, which hopefully in time will bring them more joy than sorrow.

Monica Novak is the author of The Good Grief Club, the highly-praised memoir about her friendships with six other women that carried them through the ups and downs of grief and motherhood following the loss of their babies in miscarriage, stillbirth, and infant death.  She also serves as editor of Open to Hope’s Pregnancy and Infant Loss page.  For more information about her book, and for pregnancy loss and infant death resources, please visit her website at www.thegoodgriefclub.com or e-mail her at monica@thegoodgriefclub.com.

Holding On and Letting Go

By Beth Seyda -

After my infant son, Dylan, died I started jotting down various things and scenes I recalled from our experience.  I wanted to write about these memories not only to capture the details of Dylan’s life and death as a personal keepsake, but I also wanted to send it to our health care team.  I wanted them to learn from our experience.  Writing our story felt good, it was therapeutic for me. I wanted to share the parental aspects as well as the medical.  Writing allowed me to release all this “stuff”. 

Afterward, I felt different.  For a while I was weepy and wondered if I was having delayed post-partum depression.  Or maybe I was moving onto some new phase of grieving.   I called DJ, our grief counselor, and described this to her.  Did she have any idea what this was?  She said writing was helping me let go of a lot of things and it was allowing me to move on.  And it would feel different.  That was good enough for me, as long as this made sense to someone who was trained in grief counseling, I was OK with it.

As time went on, more of these “letting go” feelings occurred and I struggled with them.  I kept holding onto those two weeks of Dylan’s life so tightly, but what had wrapped itself around the wonderful memories of his brief life were layers upon layers of pain, loss, and grief.  All those layers were heavy and I became accustomed to drudging that around.  So it felt like if I let go of the pain, I would let go of everything, including Dylan.  And I would not let go of him.  The pain from the loss and my love for Dylan were so intertwined. 

Very, very slowly I learned that I could let go of the pain and Dylan remained.  It took me a while to recognize that, though.  After shedding some of that weight, he just felt so light, like he wasn’t there, which terrified me.  But then I could feel his presence, his spirit, he had not gone anywhere.  I just had to get used to feeling lighter and know that Dylan would always be in my heart.

Beth Seyda’s life was transformed in 1997 with the birth and death of her critically ill newborn son, Dylan.  She combines her 25+ years of professional experience in consumer research with her personal experience as Co-Founder and Executive Director of Compassionate Passages, Inc. The mission of her non-profit organization is to give a voice to pediatric patients and their families through advocacy, education, and research with the goal of improving pediatric end-of-life care and providing support to dying children and their families.  Compassionate Passages donates the book Empty Cradle, Broken Heart: Surviving the Death of Your Baby to bereaved families. 

Beth lives in Chapel Hill, N.C., with her husband, Mark, and their 7-year old son, Tyler.  To learn more about Beth’s non-profit organization, go to: www.compassionatepassages.org

Growing Together

By Chuck and Cathi Lammert -

Over the many years of working with bereaved parents, my husband, Chuck and I have had many questions asked of us about coping and growing together as a couple after the loss of one’s baby(ies). Interestingly, when we were running support groups, many women in the group would line up to ask Chuck more questions about their partner’s issues than their own dealings with the loss. It is common in relationships to have a need to understand and attempt to fix the other person. One of the biggest worries after the death of a baby is the fear of separation or divorce. I can honestly say those couples we supported who truly worked on their grief issues were less likely to face this challenge.

Following are some suggestions for dealing with your own issues, and solid advice for a couple’s dealings on this difficult journey. Chuck and I hope that by sharing these coping strategies, we might help your relationship not only survive this tragedy, but become stronger and happier.

• Your relationship as a couple is the most important relationship. Let it take precedence over all others.

• When a baby dies, the grief affects both of you at the same time. Other stresses in a relationship usually do not impact both individuals simultaneously. Therefore, your closest support is not always able to respond to you because he/she is trying to cope with his/her own grief.

• Each person in the relationship will grieve in individual ways. Learning to understand your partner’s ways may take some time and may be difficult.

• Sometimes words are not needed; just your listening ear may help.

• Difficulties may arise in the best of relationships. This may be the first time you may struggle with major differences of opinions. Keep working at communicating your emotional and physical needs.

• Your partner does not have to be your sole supporter. It is OK to share with someone close to you or a support group during this difficult time.

• Reading bereavement materials may help validate your feelings. In addition, you can point out in your reading, your parallel feelings to your partner. It is also a great source to initiate a discussion.

• It is OK to reach out for professional help, it is not a sign of weakness.

• There may be stresses on your sexual relationship. Communicate your intimate feelings openly. Remember, human touch and hugs can be healing.

• Each of you may need some privacy with your feelings. Respect and give each other that space.

• You may feel differently about the choices regarding memorializing your child. Talk about your differences and try to work out a compromise.

• Each of you experienced the death of your baby but you may have had different hopes and dreams for your baby. Sharing your lost dreams can give you some insight into each other’s feelings.

• You are not the same person you were before your baby died. It may take time to accept and understand the new person.

• Each of you will search for a meaning of your loss; one or both may turn to faith or spirituality, one or both may not.

• Your baby has given you many gifts, exploring those gifts may warm your heart. Your priorities in life may change for the better.

• It is okay to enjoy life again. Your baby does not expect you to be sad all of the time. Sharing laughter and tears together helps you to heal. Search for some relaxing things to do; it may help give you a new perspective.

• This is a difficult time for both of you. Remember that if your relationship was secure prior to your loss, it can become a deeper relationship during and after your healing.

Cathi Lammert, R.N., is Executive Director of the National Office of SHARE Pregnancy and Infant Loss Support, Inc. www.nationalshare.org.  As a bereaved parent, Cathi combines her personal experience with her education and professional background as an obstetrical nurse. Her son, Christopher Michael lived just 4 days and died due to Hydrops Fetalis, a complication of Rh sensitization.  Cathi was a guest on the radio show Healing the Grieving Heart with Dr. Gloria & Dr. Heidi Horsley, to discuss Finding Help and Hope After Pregnancy Loss.  To hear Cathi being interviewed on this show, click on the following link:  www.voiceamericapd.com/health/010157/horsley011509.mp3 

For more information, you can e-mail Cathi at:  clammert@nationalshare.org

Blogger’s Baby Hoax Stemmed From Real-Life Grief and Loss

By Monica Novak -

As I walked into the house Friday morning, my husband, Al, handed me the front page of the Chicago Tribune.  “I think you should read this,” he said.  The headline story read “Blogger’s baby a hoax.”  An unmarried Chicago suburban woman named Beccah, also known as “April’s mom”, had been blogging for two months about her pregnancy with a terminally ill baby, gaining support from thousands of people nationwide who encouraged her to continue the pregnancy.  By the time Beccah claimed to have given birth at home to a girl named April Rose who died hours later, even posting a photo of her alleged baby wrapped in a white blanket, her blogsite had one million hits.  The photo tipped people off.  The “baby” was actually a lifelike doll, and followers who recognized the doll realized the truth, which Beccah later admitted.

There was no baby.  At least not this time.  But as Beccah apologized and tried to explain her actions, she confided that she had indeed lost a son shortly after birth in 2005.  Her blog, she said, was in part an attempt to help her deal with that loss.

The personal irony of the story’s timing was not lost on me.  I had just come from Advocate Good Samaritan Hospital where I had been invited to speak before a national nursing review board about the community outreach of the hospital’s Share pregnancy and infant loss support program.  When my daughter, Miranda, was stillborn there 14 years earlier, we were given immediate support-physical, emotional, and spiritual-helping us to say hello and goodbye to our baby.  After we went home, the Share program walked alongside us on the grief journey by way of support group meetings, memorial services, and personal one-on-one counseling when needed. 

Those services are provided free of charge to anyone in the community, regardless of where you delivered your baby.  Hospitals, churches, and communities all over the United States offer Share or similar support programs.  For those who don’t have a group in their immediate area, help is available by phone or online from national organizations like Share, Compassionate Friends, Miss Foundation, and many others.

Beccah’s fabricated story greatly angered her followers who had formed an emotional connection to her.  But I feel like the real victim here is Beccah.  I’m not excusing her actions, but I can’t help but feel a certain amount of sympathy and compassion for a mother who experienced the death of her son and four years later still seems to be struggling to come to terms with her loss.  I can’t help but wonder, did she hold her son, name him, get a photo of him?  Did she have any emotional support in the hospital or at home in the days, months, and years that followed?  If the answers to those questions are no, how might this story have been different if the answers to those questions had been yes?

Monica Novak is the author of The Good Grief Club, a memoir about her friendships with six other women that carried them through the ups and downs of grief following the loss of their babies in miscarriage, stillbirth, and infant death.  She also serves as editor of Open to Hope’s Pregnancy and Infant Loss page.  For more information about her book, and for pregnancy loss and infant death resources, please visit her website at www.thegoodgriefclub.com or e-mail her at monica@thegoodgriefclub.com.

Suggestions for a Well-Deserved Mother’s and Father’s Day

By Cathi Lammert -

Often times Mother’s Day and Father’s Day are two of the most difficult days for bereaved parents. Some have told me that these days are so painful that they are not able to even acknowledge it for their own mom or dad, and they celebrate with their parents on a different day. Over the years, parents have looked at me with tear-filled eyes and asked me “Am I really a parent if my baby is not here with me?”

I equate parenthood with love; the greatest kind of love. Does love stop when a baby dies? Of course not! You will always be your child/ren’s parent. No one can take this role away from you.

You may question whether you have the right to celebrate or be remembered on these days, but a parent’s love needs to be acknowledged and celebrated. If you can’t imagine joining the rest of the world in the typical activities of celebration, do something different or not at all. But also know, that even without your precious baby in your arms, you are parents and parenthood can be celebrated as you choose. Whatever you choose to do on these days, know that it is okay if it feels right to you.

The following suggestions are some ways to celebrate your parenthood on these difficult days:

* Acknowledge that you are parents.

* Be gentle with yourselves. Do only what you can handle. 

*Acknowledge that this day could be difficult and determine how you can comfortably spend the day.

*Alert yourself to the most difficult challenges of the day, such as attention given to moms and dads at church. Some parents have talked to their clergy about the importance of recognizing all parents at these celebrations.

*Family gatherings may make you feel uncomfortable. Discuss this with your family and let them know that you appreciate their love and support, but that you may not be able to attend or manage your composure throughout the entire day. Assure them that these feelings will not be forever.

*Plan ahead. Waiting until the last minute can cause frustration and hurt feelings.

*Share with family and friends how they can help make your day a special one. Sometimes they need specific suggestions, such as sending you a card, flowers, or a donation to Share or another favorite charity in your baby’s name.

*Treat yourselves to a special gift, an outing, or flowers. Send each other cards for these special days.

*Remember your baby by lighting a candle, placing a rose on the alter or dinner table, or planting a tree or bush.

It is important to tell others what you need. Do not assume that everyone will be aware of how you are feeling on these days. Being aware in advance that certain situations may be difficult, such as family gatherings or church services, allows you the opportunity to plan accordingly. If you’ve been asked to do something that makes you uncomfortable, listen to your heart. For some, spending the day in bed with the covers pulled up, or on the couch watching movies, might be the right thing. Be sensitive to your own feelings and needs, and above all, know that you are parents.

Cathi Lammert, R.N., is Executive Director of the National Office of SHARE Pregnancy and Infant Loss Support, Inc. www.nationalshare.org.  As a bereaved parent, Cathi combines her personal experience with her education and professional background as an obstetrical nurse. Her son, Christopher Michael lived just 4 days and died due to Hydrops Fetalis, a complication of Rh sensitization.  Cathi was a guest on the radio show Healing the Grieving Heart with Dr. Gloria & Dr. Heidi Horsley, to discuss Finding Help and Hope After Pregnancy Loss.  To hear Cathi being interviewed on this show, click on the following link:  www.voiceamericapd.com/health/010157/horsley011509.mp3  For more information, you can e-mail Cathi at:  clammert@nationalshare.org

Healing from Within with guests Tracy Swanson and Susan Toro

From Healing the Grieving Heart radio, March 12, 2009

Listen to radio show archive: MP3 Link

1st Guest: Tracy Swanson is the Executive Director of “Empty Cradle” a nonprofit support group for parents who have experienced the loss of a baby through early pregnancy loss, stillbirth or infant death. Volunteer parents have offered emotional support, friendship and community education since the group was organized in January 1982.

2nd Guest: Suzanne Toro’s personal experience of pregnancy loss and seeing her husband through a course of cancer treatment has reawakened her true life purpose to be of service. She is the author of Bare Naked Bliss and host of karmadharma radio Radio.

Listen to radio show archive: MP3 Link