Sixteen weeks into our pregnancy we had a routine ultrasound that showed our baby had a congenital diaphragmatic hernia.  This would prevent the lungs from developing and growing properly during pregnancy and our baby would have a 50% survival rate when born.   

We learned we were going to have a boy and named him Dylan.  One objective during our pregnancy was to bond with Dylan. We wanted him to know and feel that we loved him, we wanted him and we would do everything we could to help him live.  So we constantly talked to Dylan.  We told him about his Dad running every morning and collecting pennies and other coins he would find on the street. All the coins were being dropped into a piggy bank for Dylan.   We read to Dylan every night.  We played music, especially classical as it was soothing for us.  Our favorite was Pachelbel’s Canon in D.  

Dylan was born full-term and lived for two weeks in the neonatal intensive care unit. We continued to shower him with love, stories and music. As we cradled him and he died peacefully in our arms, we asked Dylan if he might at some point send us a sign to let us know that he was OK. 

The day after Dylan died Mark and I wanted to be outside to get some fresh air since we had been living in the hospital for two weeks.  We listened to our local classical radio station as we drove twenty minutes to our favorite forest preserve.  We started walking but quickly both felt uncomfortable.  Although we couldn’t figure out why, we decided to leave.   

Driving back we noticed a path through another wooded area near our home.  We decided to stop and give this one a try.   After walking for a while, we came upon some boulders in a creek and sat down on one.  As we stood up to return to the path, there was a bright, shiny, new penny lying on the boulder we just stepped on.  We picked it up and immediately thought of Dylan. Both of us commented on how interesting it was to find a penny way out here. 

We walked back to our car and when Mark turned on the ignition, Pachelbel’s Canon in D was playing on the radio.  We burst into tears – we knew that Dylan had sent us these signs that we would easily recognize.  And now we understood why we had felt uncomfortable at the first forest preserve — that was not where we supposed to be.  The place and timing had to be perfect to find the penny and hear Pachelbel.     

We thanked Dylan and were very grateful he sent us the signs so quickly.  From that point, while our grieving was just beginning, we no longer worried about Dylan.  We knew he was in a Heavenly place.  As we slowly healed from the loss of our son, it was comforting to know there was still a connection with him and that he could let us know that he was around. 

That was the first of many penny and Pachelbel stories that continue to this day.  Early on it seemed like when we were having a particularly bad day, Mark or I would find a penny.  It  would lift our spirits and remind us of our bond with Dylan that started in the womb.     

One of the more remarkable penny and Pachelbel stories happened just a few years ago.  Dylan inspired me to create a non-profit organization, Compassionate Passages, which improves pediatric end-of-life care. We had been successful supporting families and educating healthcare professionals locally and nationally.  

I then began getting signs about Africa—being attracted to African art, attending an African drum concert, and receiving an African postcard.  One day it occurred to me that maybe we would take our work internationally, and specifically to Africa. That same day I was doing some errands, going to the bank and post office.  While walking along I found a penny on the sidewalk and just put it in my pocket.  I noticed the penny was smaller than usual, and I remember thinking that it must be foreign.  

Later that day, I finally looked at my newfound penny. It was foreign and from “Afrika”.  I cried happy tears; Dylan had once again sent a sign and confirmed that Africa was in my future.  Within a year I made my first trip to South Africa, presenting at an international pediatric hospice conference. I have since been back three more times to help develop pediatric palliative care programs at Cape Town hospitals and hospices.  One evening having dinner at a restaurant with a physician there, Pachelbel’s Canon in D quietly played in the background and I shared the story with her.    

How the heck did an African penny come to be on Franklin Street in Chapel Hill, North Carolina and me be the one to find it?  I’ve given up trying to figure out how these pennies and Pachelbel appear exactly when they’re suppose to.  But all the signs from Dylan have confirmed for us that there is an afterlife and that love never dies.    

Beth Seyda

The post Pennies and Pachelbel: Signs from a Son appeared first on Open to Hope.

So my husband, Mark, and I decided to see an early movie and have dinner.  This would keep us away from our house when the young kids were coming around and get us back home before the college kids got wild on Franklin Street.  I turned off all the lights in our house so it was clear that no one was home as I left to meet Mark downtown.

The little ones had already started the door-to-door ritual as I drove out of our neighborhood.  I cried as I saw all the little ghosts and goblins.  It was another reminder that our little one was not here.  I would not be able to hold Dylan’s hand and walk him around our neighborhood on this holiday.  This was just one of the many things we would never get to do.

When we returned from the movie and dinner, Mark and I talked about how it was good to be away.  We needed to take care of ourselves this time.  There would be other Halloweens.

The post First Halloween appeared first on Open to Hope.

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 accustom 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, NC 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

Beth appeared on the radio show “Healing the Grieving Heart” with Dr. Gloria & Dr. Heidi Horsley to discuss “Miscarriage and Infant Loss.”  To hear Beth being interviewed on this show, click on the following link: www.voiceamericapd.com/health/010157/horsley103008.mp3

The post Does Grief End? Mom Holds On While Letting Go appeared first on Open to Hope.

Introduction

One of the many challenges parents may face after their child dies is how this loss fits within their spiritual/religious beliefs.  Families may not have had their faith tested before and this experience may force them to consider those big life and death questions.

This article offers some families’ perspectives, including my own, on soul-searching that may assist caregivers in how to better support bereaved families. The terms “spiritual” and “God” are used here in a very broad sense and are not necessarily connected with organized religions/institutions.

Debra and LeRon

One of the stories from my award-winning educational film, When a Child is Dying, includes bereaved mom, Debra, talking about her son, LeRon, who died at age 10 from cancer.  Throughout her story Debra shares the struggles with her spiritual/religious beliefs during the five years of LeRon’s illness and after his death.  Debra has a more traditional religious background, belongs to a faith community, and regularly attended church services.  Debra describes how when LeRon was ill she hid her Bible, stopped praying, and was angry at Christ.  Later she gave Him a piece of her mind and “just let it all out”. After that she started reading the Psalms and a couple of them kept her going.

During particularly tough times Debra turned to friends who were more religious and they went to church together.  She felt “the Lord had given me this wonderful child and there was not a time limit. I believed that the going out was just as important as the coming in.  We had a wonderful pregnancy and now this was another test.  I didn’t know what or how to do it, but I felt like I would know how somewhere along the line.”

Near the end of LeRon’s life Debra’s “religion was outside”.  She planted every inch of her mother’s yard and didn’t have to buy any vegetables for six months.  Debra felt like God was teaching her that although He was taking her son, “there is still life, there is still something else and whatever it is you can do it with abundance.”

After LeRon died, Debra held a celebration of his life with his favorite music and Disney songs.  His purpose, as Debra looks back, “Was grand.  He’s left a lot behind and I’m still feeling the ripples of it as I go about.  There’s never a day that somebody doesn’t ask me about him or remember something.”

Me and Dylan

It has been eleven years since the death of my infant son, Dylan.  I refer to my experience as a spiritual awakening.  My husband and I were raised in religious homes (Jewish and Catholic, respectively), but neither of us has practiced any religion for 30+ years.  We are exposing our seven year old son, Tyler, to a variety of spiritual concepts and religious rituals so he can decide if/what he wants to believe.

I too was angry and Dylan’s death forced me to ask many of those big questions. I primarily devoured books that I hoped would provide some insights.  My heart felt like it had broken, so it was open and I wonder if that is why I seemed more receptive to new spiritual ideas.  I did not agree with everything I read, but they made me consider possibilities I never imagined.  For example, I had envisioned Heaven as a place where souls just hung out.  But now I believe the universe is an active place full of angels, spirits and guides that help us with our journeys here on earth. I had never given much thought to reincarnation, but now past lives could explain some things.

I would also see and hear things (e.g., on TV, in magazines) that resonated with me and helped put into words the shifting that was taking place inside. These include his “illness was a gift”, “use your work to make a difference”, and “maybe what happened today didn’t happen to you, maybe it happened for you”.  Please see the list at the end of this article for the books I read on my initial spiritual quest.

Back when I was about six months pregnant with Dylan, one of my sisters called to see how I was and what was the latest update from the doctors (we had received a prenatal diagnosis of a congenital diaphragmatic hernia). I proceeded to tell her how much I was having to learn – be patient, no control, anatomy, medicine, etc.  She very matter a factly responded, “Oh, Dylan is a wise, old soul, he’s here to be a teacher.”   “Why do you say that?” I asked.  “Did you just listen to yourself, would you be learning any of this if it weren’t for Dylan?” she asked. “No”, I replied.  I recalled that conversation months after Dylan died.  I thought about how much more I learned during our pregnancy, Dylan’s time with us and since he died.  Family and friends tell us what they have learned.  Now when I think about what my sister said back then, I know she was right.  Dylan was here to be a teacher.

I have signed up for the life-long journey on this, it’s been a slow evolution and I am not the same person I was 11 years ago.  Dylan’s birth and death taught me to be more present and pay attention to my life, I am a better mother, I am more compassionate, and I know that his spirit is always with me and guides me.

Asking “the BIG questions” and Spiritual Stages of Grief

Since the death of a child goes against what we believe about life — that we will not outlive our children — the automatic question is often WHY.   Why did my child die?  Why did my child/family have to suffer?  Some parents might be able to verbalize these questions and feel comfortable engaging others in discussing them.  Others may be quieter with internal dialogues, as it can be frightening not only to ask the questions, but then possibly to receive answers.

Some other common big questions are — Are we being punished? (possible translation — Did my child die because I did something bad?) Where is my child now?  Did s/he go to Heaven? (possible translation — Is there an afterlife? Is my child safe?)  Will the pain ever go away? How can I go on? (possible translation — What will my life be like now?)  Do we want another child? (possible translation — What if our next child dies?)

Whether members of a faith community or not, parents may be confronted with some of the following emotions about their spiritual beliefs:

Anger:  Families may for the first time doubt and question long-held beliefs. They may turn away from God and not participate in their faith community.  This is when they are often asking “Why?”.

Working through the Anger: Parents may actively search for answers to their questions. They may do this within their church, they may seek other resources, or “try” other religions. Current faith communities can pose obstacles — questioning faith might be viewed as sacrilegious/sinful and/or cause guilt.  If not active in a faith community,  parents may not know where to turn.

Reexamining Faith/Rethinking God: Parents may examine their previous beliefs, let them go and create new ones.  They may have strayed from their church and now return. This can be a time of great change and exploration of new ideas. This might be when someone may move from being purely religious to a broader, more spiritual view.

Parents often ask the big questions when they are experiencing many emotions. So while they may be asking, they are not ready for any answers.  And then there are the people who just offer you their unsolicited opinion of God’s plans.  I love this quote from Amy Kuebelbeck’s book, Waiting with Gabriel: A Story of Cherishing a Baby’s Brief Life, because this type of thing happens all the time.  ” ‘You are so strong.’ ‘You are taking this so well.’ ‘I could never handle losing a child — I don’t know how you do it.’  These apparent compliments, given by well-meaning people to parents whose baby has died, are not particularly welcome.  Perhaps the most puzzling platitude is ‘God never gives you more than you can handle.’  What’s that supposed to mean? That weak parents get to keep their babies and strong ones don’t?  If that’s the deal, I wish somebody had told me that going in.”

Debra’s anger phase is clearly recognized, but then over time she became more reflective about LeRon’s purpose and what this experience meant to her.  She walked away from her religion and came back.

Parents Bob and Mary, had some spiritual differences after their premature twin, Gabriella, died.  Bob found it helpful to go in the church that was in the hospital and say a prayer every day for Gabriella. He didn’t ever feel angry at God or betrayed by Him. Mary did question her religious beliefs and because she was questioning them wondered if her beliefs were not as strong as she had thought. Mary hasn’t figured it out yet and she is trying to put it all together.

We had a lifetime of plans and dreams for Dylan.  At first that was all we could think of, all the things that were never going to happen.  I felt robbed.  But as we replayed all the events, we freaked out because it was clear how close we were to losing Dylan twice in those first 24 hours.  This helped change our perspective, we were so lucky to have 2 weeks with him.  Those 2 weeks were a lifetime.

Lessons Learned

The death of a child can be a profound and transforming experience for families, a “new normal” emerges.  Parents may slowly figure out how to integrate the love for and loss of their child into their lives.  Families may be changed as a result — different priorities, outlooks, and dreams for the future.

Her daughter’s death made Mary realize that nothing is guaranteed in life and taught her how precious life is.  Mary now tells the people she loves, she “loves them” every day, and lives her life that way.

Pat, mother of teenage son Jodie who died, looks at the world totally differently. She appreciates things “a hundred thousand times more, very simple things.”  Pat knows that being here is all about love and Jodie taught her that — how to accept love and how to give love.

My experience has me feeling very vulnerable, but not the kind where I am afraid to do anything because something bad may happen.  Because our sweet, innocent Dylan died, I know now we are not special and protected from tragedy.   We never know when someone we love will be taken away, so I want to take advantage of all opportunities to live, learn, and love.

From talking with bereaved parents, reading stories, and collecting eulogies, here are some common themes and spiritual lessons learned:

• Love never dies
• Be present, in the moment

–          Pay attention to life

–          Live life passionately (don’t just go through the motions)

• Compassion

–          Better understand pain and suffering

• Gratitude

–          Appreciate small things

–          Focus on what have vs. not have

• Inspired by child’s courage

–          Examine own fears

• Focus on what’s really important (don’t sweat the small stuff)
• Balance head and heart
• Beauty of the circle of life
• Teach what you have learned

–          Live by example

Supporting Families

Caregivers can support families in various ways:

• Acknowledge it’s normal to question spiritual/religious beliefs

–          Struggles can occur any/multiple times — at diagnosis, during illness, after death

• Journey with the family — allow them to go through spiritual stages of grief

–       Uncertainty is challenging

–       Religion may/not provide comfort

–       Institutions may foster blame and guilt

–       Be wary of those offering “the answer”

–       Be open to wherever insights may come from that cause reflection and clarity

–       Stick with them as it can be a long and lonely journey

• Suggest discussing issues with a “spiritual care” counselor

–       Not necessarily a religious person/clergy

–       Needs to be open to/support the journey

–       Good listener

–       Try to uncover the real concerns behind the questions being asked

–       Offer options/resources

Spiritual journeys can take many paths and detours, there is not only one way.  I was reminded of this when I spoke with a woman sitting next to me on an airplane. During our flight we learned we both were bereaved Moms and exchanged stories. Our religious/spiritual beliefs came up and we were polar opposites.  She believed her daughter would remain dead until Jesus Christ arose.  She looked at me like I was from Mars when I described some of my spiritual beliefs. But what struck me was that the end result was the same, we were both at peace.

Final Thoughts

It is difficult to accept that “good things” can come from the death of a child, but my wish is that all families and caregivers be open to the possibility of spiritual growth and receiving gifts from these children.

Understanding:  What happens to you does not matter: what you become through those experiences is all that is significant.  This is the true meaning of life. ~ Zen Cards by Daniel Levin

Books that I Read while Seeking Answers to “The Big Questions”

A Grace Disguised: How the Soul Grows Through Loss by Gerald Sittser

Angelic Presence: Short Stories of Solace and Hope After the Loss of a Baby by Cathi    Lammert and Sue Friedeck

Conversations with God (Books 1-3) by Neale Donald Walsch

Destiny of Souls by Michael Newton

Embraced by the Light by Betty J. Eadie

Empty Cradle, Broken Heart by Deborah Davis

Friendship with God by Neale Donald Walsch

Journey of Souls by Michael Newton

Synchronicity as Spiritual Guidance by Mark Thurston

The Celestine Prophecy by James Redfield

The Laws of Spirit: Simple, Powerful Truths for Making Life Work by Dan Millman

The Seat of the Soul by Gary Zukav

The Tenth Insight by James Redfield

Tuesdays with Morrie by Mitch Albom

Transcending Loss: Understanding the Lifelong Impact of Grief and How to Make it Meaningful by Ashley Prend

Waiting with Gabriel: A Story of Cherishing a Baby’s Brief Life by Amy Kuebelbek

When Bad Things Happen to Good People by Harold Kushner

Writing to Heal the Soul: Transforming Grief and Loss Through Writing by Susan Zimmermann

Other Books with Spiritual/Religious Themes

A Grief Observed by C.S. Lewis

Lament for a Son by Nicholas Wolterstorff

Psalms of Lament by Ann Weems

The Spiritual Lives of Bereaved Parents by Dennis Klass

When a Child Dies by Carol Pregent

This article was first published in the ChiPPS Pediatric Palliative Care Newsletter, February 2008.

The post Spiritual Struggles After a Child Dies appeared first on Open to Hope.