Grief Experience

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The death of a child feels unnatural. Children are “supposed” to outlive their parents, who hope to see them grow and develop and thrive into adulthood. Siblings are “supposed” to have playmates and companions for life. Now the future looks entirely different. When a child dies, the family may experience a profound loss of hope. Perhaps this is why we say that child death causes the most painful and lasting grief of all.

Your Team:

Psychologist

A mental health professional who uses therapy and other strategies to support coping and adjustment and treat concerns regarding social, emotional, or behavioral functioning.

Social Worker

A trained professional who works with people, groups and communities to help them better their lives.

Chaplain

A member of the clergy who is responsible for the religious needs of an organization and/or its constituents.

Spiritual Leader

An individual who leads and/or guides individuals or groups coping with life experience and challenges.

Palliative Care Clinician

A specialist whose aim is to improve the quality of life of their patients over the course of their illness regardless of stage, by relieving pain and other symptoms of that illness.

Hospice Team

Specialized care for people whose prognosis is measured in months instead of years, and the desire is to focus on comfort.

Grief Counselor

A mental health professional who specializes in bereavement and loss.

A psychologist, social worker, chaplain and/or spiritual leader or palliative care clinician or hospice team can support you, your co-caregiver, and other family members in processing strong emotions. A hospice team or grief counselor is specially trained in bereavement support and can also recommend support groups and other resources. Of course, close family and friends can also offer support and a sympathetic ear.

Grief is an emotional, cognitive, physical, and spiritual response to loss. You may experience grief on all these levels in different ways at different times. Grief is not linear; there is no one way to grieve, or timeline for grief. Every person is different, and the ways in which they process loss are different.

It is typical for grieving parents to question how they will survive and whether the family will survive. You may fear for your own health and safety, your parenting partnership, and/or your other children if you have them. As each family member looks for ways to cope, you may find that your ways of grieving clash. For example, one might continue to question decisions they made, while another may be at peace. One might prefer quiet time while another wants to talk about the loss. One might turn to spiritual practice while another experiences loss of faith. One may want to display photos or mementos, and another may find it too painful to see these things. One may want to have others join in the sorrow while another wants to be alone or only with family members. (The section Grieving with Others speaks to this in detail.)

These differences can create even greater tension in a household already struggling. Identifying, understanding and respecting the many ways in which people grieve can bring family, friends and community together in a spirit of love and support.

“I remember grief being just going to the grocery store, getting back in the car and falling apart. You just fall apart, and then it’s a big empty hole and you can’t even see the next step, which is just to drive home, you can’t even see that or even conceive of how you could do that, or why you would even do that.“

– Sandy, parent of Jack

Grief Behaviors

Common grief behaviors include

Defense against the grief: shock, numbness
Expressions of anger or sadness: tearfulness, irritability, lashing out, depression
Physical pain: muscle tightness, headache, stomachache, digestive issues
Change in eating habits (more food, less food), possible abuse of alcohol or prescription or other drugs (particularly if there has been a prior history of abuse)
Change in sleeping habits: Less sleep, more sleep, more restless sleep, nightmares
Questioning: drawing closer to spiritual beliefs, turning away

Changes in Routine

You will very likely experience changes in the flow of your life—even if your child was not living at home. If their condition required medical equipment, there will be spaces where that equipment once stood. You may find toys, clothes or other belongings in unexpected places, triggering thoughts and feelings. You may have more energy or less. You will have fewer appointments to keep; you may feel loss as the close relationships you had with clinicians begin to fade. Perhaps you will welcome more time to spend with your other children, friends, family, and on yourself.

The openings may feel welcome at some times, and like black holes at other times. You may crave company and support. You may feel that your emotions are too much to put on others and choose to avoid company and support. You may enjoy seeing other children at some times and dread seeing them at other times.

If you have other children, you may fear being separated from them for any length of time. They, too, may fear being away from you. You may also have questions about your identity as a parent, and how to respond to questions about your family. The section on Parent Identity suggests ways to think about this sensitive topic.

It takes time to adjust to changes this profound. Again, there is no time frame that suits every person and every family. There are no right or wrong answers, and the answers you have now may change. Take your own time.