It’s not the wound that shapes our lives, it’s the choice we make as adults between embracing our wounds or raging against them. ~ Geneen Roth

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.

Tags: anger, Depression, grief, guilt, hope