The Eternal Bonds of Grief

 Losing a Child with Disabilities

Tzivy Reiter, LCSW 

There are no words to capture the pain of a parent who loses a child.  For many families, this devastating loss is compounded by some of the special issues inherent in parenting, and now mourning, a beloved child with disabilities. While there is little that can truly diminish the pain of these parents, understanding and sensitivity shown by family and friends can provide a measure of consolation when it is so desperately needed.

Symbiotic Connection

When a parent is caring for a child with a disability, there is often a dependence that extends well beyond childhood.  The physical and emotional tasks of childrearing are multiplied many times over, creating an intense connection.

Julie’s* daughter was severely disabled and dependent on her mother for her basic needs.  She died last year at age 37.  “On a physical level, when I fed her, clothed her and cared for her, there was always contact. We were as one.”

Mrs. Eli Stein’s daughter Chavie had been sick her whole life due to a neurological disease.  Chavie died when she was 14.

“I took care of her 24/7 for 14 years.  She was non-mobile and nonverbal.  She needed me to feed, toilet, medicate, groom, dress and suction her.  Her every breath, quite literally, was dependent upon me.”  When there is a symbiotic relationship to this extent, a parent can experience a feeling of oneness with his/her child that creates a devastating void when that child is gone.

When a parent raises a typically developing child into adulthood, there is a natural process of separation-individuation that allows the parent and child to remain close while achieving a level of separateness from each other.  This process differs for adult children with disabilities.  While many grow up to achieve remarkable levels of independence, according to Dr. Norman Blumenthal, Director of OHEL’s trauma and crisis response program, “there are those children with disabilities who do not complete this separation-individuation process,” thereby maintaining their attachment to their parents and dependence on them.  This exacerbates the grief process when there is a loss.

A Part: Yet Alone

Some parents of children with disabilities can feel like it is difficult for parents of typical children to understand the daily challenges of their lives.   This feeling is compounded when there is a loss.  

According to Eli:  “I felt like people had no clue what Chavie's life was like, let alone what her death was like, and that it made it harder for me to be comforted by them. There were many people that came out of the woodwork after Chavie died.  They wanted to support us, but they really didn't know or understand our situation.  I couldn’t help but feel that it would have been nice if all the people that were there for shiva, came before.”

Creating a New Life

When a parent’s entire life is centered on caregiving, what happens when there is no one left to care for?  Adapting to the reality of one’s new life devoid of the caregiving role is one of the heartbreaking tasks that can accompany mourning a child with a disability.

After Julie’s daughter died, “I woke up in the morning, and I literally had nothing to do. My entire life’s work was caring for my daughter.  I had no idea what to do with myself.”  Finding new meaning and purpose amidst the emotional pain of grief is a process that can take many years and one that Julie is still figuring out, step-by-step, one day at a time.

Diminishing the Loss

By no means exclusive to the loss of a child with disabilities, many well-intentioned people just don’t know how to fathom the horribleness of losing a child.  Out of a desire to provide comfort, they may end up saying something that inadvertently adds to the family’s pain.

According to Eli:  “There were people who thought it was less of a life, less of a loss, because she was so disabled.  Many people said to me, “now she’s free.  She’s running in a way she could never do in her life.  Her body is free.”  I know they were trying to comfort me, but this bothered me.   I wanted her with me, in whatever form I could have her.”

Guilt & Grief

Because of the demanding nature of parenting a child with a disability, there can be an understandable measure of relief when a child with disability dies, which often produces feelings of guilt.

Chavie died on Rosh Chodesh Nisan.  Many people asked Eli how she would manage to make Pesach after the shiva.  Eli couldn’t help find the irony in that question:  “I've been sitting on a couch holding her for 5 months straight.  Now I can do whatever I want.  It was never so easy to make Pesach."  When Chavie died, there was a relief from the physical caregiving.  “I finally had some time to myself.  But emotionally she was my life.  The grief and the guilt mixed together, it was so hard.”

Another aspect of the guilt is that because so many parents move heaven and earth to help their children with disabilities, there is an excessive amount of responsibility they may take upon themselves for keeping them safe.  “I literally helped her breathe every day.  When she died, I felt like I failed her.”

Comfort and Consolation

In the midst of unspeakable tragedy, how can family and friends offer comfort to those who have experienced the loss of a child with a disability?   While there is no shortcut through the pain, there were some words and actions that brought comfort to grieving parents in this situation.

* Actions and words of consolation after a loss should be commensurate with the relationship.  According to Eli:  “The people who appreciated my daughter in her life, were best able to appreciate her in her death.”

* Find some story or memory that is meaningful about the child and share it with his or her parents.  “Talk about my child, how my child brought you joy or understanding.  She deserved more than what she got.  I want it to be about her.”

* Because children with disabilities are often marginalized by society, it is so meaningful to parents to have that child recognized as a person.  “The people that appreciated Chavie’s qualities- her smile, her mischievous sense of humor, her cleverness.  The people that recognized her as a person.  This always made me feel better.”

* Let grieving parents talk about their child.  Let them talk about what their child meant to them.  Listen to them for as long as they need.

* Don't say, “at least she's not in pain anymore.”  Don’t say any statement that begins with the words “at least.”

* Remember their child.  Remember the child at his/her yartzheit and at special family milestones.  Do a good deed in the child’s memory.   “I want my child to be remembered.  I want her to live on - I don't want to be the only one to remember her.”

* Don’t have preconceived notions about their grief.  Don't expect them to be crying their eyes out or not crying at all.  People grieve differently and the grief process is complex when you have a child with disability.  Some parents can’t even let themselves feel the pain because it’s so overwhelming, barely scratching the surface of their grief.

* Show up, after the shiva, after the shloshim, after the first year.  Be there, validate the loss, don’t expect them to return to their former lives.  Be there for the long haul.

Continuing Bonds

Parents who lose a child, over time, find ways to continue the relationship with that child, each in their own way.  Some talk to the child, make frequent visits to the child’s grave, observe special mitzvot or projects to commemorate their child and talk about them frequently.  Eli wears her daughter’s jewelry.  She also keeps a 9 day candle burning continuously since the day Chavie died 8 years ago.  To this day, she carries around a syringe that she used to take care for her.  “It's always in my purse. Why?  I don't know.  That’s how I cared for her.  It makes me feel connected.  It’s always with me.  She’s always with me.”

*Julie’s name is changed at her request 

Tzivy Reiter, LCSW-R has written extensively about issues related to mental health, trauma and developmental disabilities.  She is a Director at OHEL and an editor at Building Blocks Magazine.    She is also the author or “Briefcases & Baby Bottles:  The Working Mother’s Guide to Nurturing a Jewish Home.”