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Grief Series: The Beginning Work of Grief

A child life specialist at Cook Children's breaks down the grieving process and how to live with loss.

By Ashley Pagenkopf, MS, CCLS, Child Life Specialist at Cook Children's

The purpose of this series is to provide an understanding of grief in adults and children. Our world is filled with many things that are worthy of our grief. It is helpful to identify grief, experience and process the grief, and then understand the other side of grief, which is not the absence of it.

Grief: The Beginning

In grad school, I took a memorable class from an incredible professor on grief. One of the assignments was to create a timeline of loss from childhood to present day. That assignment was over 15 years ago, and since that time, I’ve been married and had three children. My timeline is inevitably filled with more losses than I would have imagined. Throughout my timeline were the deaths of grandparents and great-grandparents, moving across the ocean and then across the country, losing friendships, inevitable goodbyes, relationships and breakups, and the death of pets. Since then, I’ve added more deaths of family members, deaths of co-workers and friends, loss of jobs, moves of family and friends, my children’s grief and loss, a global pandemic, and new cancer diagnoses for my children and friends. There is no way to fully describe the grief that surrounds each of these experiences. They are each their own story, and my grief may be different than the grief of the other people these events impacted.

The Center for Loss and Life Transition talks about grief being a counterpart to love. stock-photo-family-relationships-and-trust-concept-father-talking-to-his-sad-little-son-at-home-in-evening-1398231200.jpg

“It is the normal and necessary journey we embark on after something we have valued no longer exists.

  • If someone we love dies, we grieve.
  • If a beloved pet dies, we grieve.
  • If someone we love leaves us, we grieve.
  • If something we value is taken away from us, we grieve.
  • If circumstances we were comfortable with or attached to change, we grieve.
  • In general, the stronger our attachment to the person or the thing, the stronger our grief will be.”  

I think it is important to remember that grief is not limited to death. While it is instinctive for us to grieve a death, our bodies also grieve other losses. I wrote an article in 2020: Everybody is Grieving Something. This was at the beginning of the pandemic, and my own children were deeply grieving many aspects of their lives: their schedules and routines, their friends, their normal.  Even in the last three years, there has been more and more added to their grief, and I have seen their grief bubble back up as they remember that time.

While grief is inevitable and necessary in every way, it is not easy – it is work.  The beginning of grief can be the most difficult for many people. Many have probably heard of the five stages of grief by Kubler-Ross: denial, anger, bargaining, depression, and acceptance. Often denial, anger and bargaining can all fall at the beginning of grief. In this series, we are talking about grief in terms of the beginning, the middle, and the other side. However, it is important to understand that the grief process is not linear. There is movement back and forth between the different stages and feelings. In my opinion, this graphic represents the process most accurately:Stages of Grief

The loops in this graphic represent the reality of returning to different stages in the grief process repeatedly. Returning to shock and denial may seem impossible after accepting that a loss is real, but the response to experiencing many feelings at the same time can take you back to a certain stage even after someone has seemingly moved through it.

I find the beginning of grief to be the most difficult often because it is the most physical time of grief. Grief is not limited to crying. Your body can respond in ways that you never expected, and I have seen initial grief manifest in the most surprising and difficult ways.

My grandfather died just days before my daughter was diagnosed with a brain tumor. Initially I was so angry that he died, and I was shocked by my own anger. I had seen him only two weeks prior, and I had plans to spend some more time with him. I felt robbed, and I was livid. On the way home from his funeral, I knew I was finally going to share my daughter’s diagnosis with my parents. I had been waiting for them to get through the funeral. The two-hour ride home from the funeral was physically debilitating. I had the emptiest feeling in the pit of my stomach, yet my heart was about to beat out of my chest. I was in the middle of a panic attack and felt like I had no control over my body. It was the most physical manifestation of grief that I’ve ever felt. Many will not be able to sleep or eat. Others are nauseous or cannot keep food down. Many people cannot stand or sit; they must curl up and be on the ground.

For children, their grief may look very different in the beginning. Often people are amazed when a child learns of a death or a loss, and they go on playing or coloring and seem otherwise unbothered. However, it is important to pay attention to them during this time. Their play and their art will most likely indicate how they are feeling. You may see a drawing of a family, but they leave a certain family member out or put them in the sky for the drawing. You may notice that other small things upset them more quickly and intensely than normal. They will find a way to release their emotions. It is important to remember that play is a means of communication for children. Kids may also withdraw. This is not a problem as they don’t always have the words to communicate what they are feeling. However, it is important to meet them in their withdrawal and help them begin to process their grief. 

We know that there is no way around grief. In choosing to ignore grief, we complicate things further down the line. When ungrieved losses start to pile up, it can take a great deal of time to sort through each feeling and loss and effectively grieve each one of them. So what can we do in the beginning of grief?

  1. Name the loss. My grandfather died. My daughter has a brain tumor. Our dog died. My friend has aggressive breast cancer. Naming the loss allows it to become real and the power of denial to become less of an issue. Help your kids learn to name their loss.  Ask questions that will help them name their loss. Use language that children can understand. Words like “passed” or “went to sleep” are not concrete enough for children and do not clearly explain the permanency of the loss. We encourage you to use the words “died” and “dead” and never lie about any part of a loss.
  2. Allow for safe space to grieve. This can be a physical space or an emotional space. A mom may need to be on the floor as she grieves, so I often place a blanket on the floor. A person may need to walk outside or pace. Allow space for these initial physical moments of grief.  Do what you need to do so that feelings can be felt. For a child, this may mean providing them with a safe sleeping space that is closer to you or providing them a physical outlet like running or going on a bike ride. While children may not physically react, their bodies are still having a similar physical response, and they may need an outlet to release the tension and stress.
  3. Meet basic needs. Meal trains were invented for the beginning of grief. When adults can’t find their footing to make dinner or even heat up food for themselves or others, making sure that people have food and meals readily available is essential. If you are grieving, find something that you can eat and drink and accept the meals. Show up to help with daily tasks and chores and allow people to help you get things done if you are the one grieving. These things inevitably allow for the space needed to move through the beginning of grief. Children need the same things. Make sure they have their basic needs met. Safety is a basic need for children. It may look like longer tuck-ins or eating the same comfort food over and over.

The beginning of grief can be exhausting for everyone involved, but it is also the most crucial time. The beginning of grief is the acceptance of entering into the work of grief. The work of grief doesn’t have a timeframe, but the beginning allows for the grief work to start and is an invitation for the body and heart to begin healing. We want to be people who enter into grief and help our children learn how to grieve effectively. And while the beginning of grief is challenging, it is also the beginning of healing.

Get to know Ashley Pagenkopf 

Ashley PagenkopfAshley Pagenkopf is a Child Life Specialist in the Emergency Department at Cook Children's Medical Center. The Child Life program at Cook Children's offers a variety of services, all designed to make your experience at Cook Children's the best it can be. Our services include educating, preparing and supporting your child through tests and procedures, as well as coping with any life challenges you and your child may face. Child Life specialists work with kids and families to make their visit to the medical center easier and more comfortable. We offer your child and your family an opportunity to express and work through any fears and concerns you may have. We'll also provide an explanation about what's going to happen during your visit and work with parents, brothers and sisters and other family members who may be involved in your child's daily care.