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Grief Series: The Middle Waves of Grief

A child life specialist at Cook Children's shares how to navigate the grieving process as a family.

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

The purpose of this series is to provide 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 Middle

Grief is not hard to come by. So much of life includes losses – big and little. In 2017, our family experienced some big losses. My parents moved overseas for my dad’s job. While this was a great move for them, it was a loss for my little family as the distance was hard on my girls and our support system changed. Not even a couple of months later, a close friend of mine died suddenly at a young age. He was not only our close friend, but the dad to our daughters’ close friend. It was a shaking time. Not even 6 months after that, we moved and remodeled a home and our dog of 10 years died. In a short amount of time, we experienced deep sadness and sorrow. Not only did it affect us individually, but it also affected our family unit and our close family and friends.  Once we were able to begin to process this time of grief, we realized so many of our losses were colliding with one another. It took time and support to separate our emotions about each experience and begin to work on healing. stock-photo-mother-talking-with-unhappy-teenage-daughter-on-sofa-715726975.jpg

Experiencing loss is universal. Therefore, it’s easy to say that grief is also universal – everyone has grieved at least one thing in their lives and often many events overlap.  Once we have moved past the physical, initial lament of grief, we can start to move towards grieving and healing. In this middle time, though, healing and grieving are happening simultaneously.  We must work through the grief to begin to heal.

This time in grief is when memories can still be painful and sometimes breathtaking. Tears can often flow at strange times and anxiety shows up and throws you back to the beginning physical grief. This middle time truly feels unsteady. Your body is not paralyzed every day from the shock, but moments of deep grief hit you like a wave, and you feel like you are drowning all over again.

This process is okay. Don’t run from the wave, learn how to breathe underwater.

I’ve spoken about many moments from my daughter’s diagnosis with a brain tumor. The initial few days at work, all I could do was name it. People would ask me how I was doing, and I would bluntly and matter-of-factly reply, “My daughter has a brain tumor.” It was a strange feeling, but every time I named it, I was able to catch my breath a little more. Over time, I learned how to breathe in the face of our reality. I remember the first time a doctor called me to help support a family walking through a very similar experience. He immediately said, “Oh I can call someone else if that’s better.” I quickly told him no and that I would be there soon. Standing with that mom, I could feel her initial shock and despair deeply, but it did not overtake me. Oftentimes, we can learn to do something better by helping someone else do it or by being present with them. Stages of Grief

Children experience the middle time of grief also. Often, children’s behavior is the evidence of their grief. As my daughter has walked through her brain tumor diagnosis and brain surgery, we have seen grief present itself. Her process of grief did not begin until well after her surgery. Most recently, it has looked like absolute rebellion to pack for our trips to follow-up appointments. She has verbalized that there is fear every time she has an MRI, and she doesn’t want to do it again. So, she chooses not to pack at all. She knows that refusing to pack will not stop us from going to her appointment, but it is part of her grief process and the expression of her anger with a little bit of denial. While there will probably always be some level of anxiety for her around scans, currently each scan provides an opportunity to process and grieve the first scan that revealed her brain tumor and the scan after surgery showing that there was some residue tumor. She has verbalized often, “I don’t want to have to go to follow-up appointments. I wish I never had a brain tumor.” Her behaviors are expressing her stages of grief. 

This middle time of grief has no timeline. It is very fluid and very looping through the stages. In reviewing the graphic of stages, it is important to be mindful of how long you or your child is staying in one stage. While anger is an appropriate emotion, staying in anger or returning to anger over and over (or any stage) could be the beginning of complicated grief. It is normal to loop back to a stage – even denial. It is normal to not want something to be real long after you’ve embraced the reality. We see this happen every time we want to pick up the phone to call someone that has been gone for years. Our bodies and our deep love for them remember their presence and return to those moments. So, it is normal and expected to return to these stages. It is just important that we work to move through them while also recognizing that they may come back up again. 

So, what are some ways that we can continue to move through and help our kids move through grief knowing that it will take time and revisiting stages before we begin to see the other side?

  1.  Know who your safe people are and who your kids’ safe people are. I like to call these people your wave riders. They are willing to ride the waves of grief that inevitably come. Grief done alone can become very complicated. It is important to have people that you can honestly share the process with. When the wave begins to come or you find yourself underwater, it is important to have a safe person or persons that you can trust to be in that moment with you. These are the people who you can meet, call or text, and they will meet you in that space, empathize with you and encourage you. They are people who have understood the grief you’ve felt and known from the beginning. For our kids, we want to be their safe person as much as we are emotionally able to be. It’s important as parents and caregivers to see a behavior and recognize if it is part of their grief process and be willing to process it with them. It is important to note, though, that when the whole family is grieving, it is okay for your children to have others that they feel safe sharing with also. It can be very helpful for their process to have others that will acknowledge their grief too. However, when a whole family is grieving, it is equally as important that the family is open and communicative about their grief and their struggles. When everyone grieves alone without any communication, it creates a very complicated grief process where people are more likely to get stuck in a stage. Safe people – your wave riders – will help you move through this middle grief.
  2. Be willing to do the hard work. Grief is not easy – it is hard work, and to move through it takes intentionality. When you’ve moved past the beginning paralysis of grief, this middle time is an opportunity to begin moving towards the other side. This may look like needing to utilize professional counseling outside of your wave riders. Counseling can help you start to process the looping thoughts and the triggers that take you back to a stage over and over again. It is important to recognize when this could also be helpful for your child. Play therapy, art therapy and music therapy are all good options for professional guidance to help our kids process grief. It is also important to notify school counselors, youth pastors and other adults that can be available to your child as they walk through this time. 
  3. Honor the grief. This is a great time to establish tradition or memorialize the event or person.  By honoring this grief in some way, you are naming it but also looking through a positive lens and helping your body and emotions move towards the other side. For the death of a person, this often begins at the funeral or memorial service. This can take on many forms, though. During the peak of the pandemic, my girls and I put together a COVID time capsule. It was an opportunity to process the horror of the time, while also taking the time to find the positives and creating a memorial that we could revisit in moments that we are remembering that season. This can also look like establishing other kinds of legacy. Years ago, one of my co-workers began a tradition of a group of us adopting a family every Christmas to honor a co-worker that died and left a legacy of love and hospitality. Every year that we do this, we remember him fondly and honor the best parts of him. Often people will establish financial memorials and foundations to honor someone’s life and legacy.  Simple traditions can be established like eating someone’s favorite food in honor of their birthday or anniversary of their death. Story-telling is also a simple way of honoring our grief. As we tell stories of our grief, we begin to see the purpose of an event or a person’s life. The words begin to give purpose to the pain and struggle. There are so many ways that you can honor grief, but any honor or memorial that is given to the pain or struggle creates a path towards the other side of the deep grief. It gives our heart an opportunity to celebrate the event or person.

There is so much that could be said about the nitty gritty middle time of grief. This is the trench in the grief process. It is messy and beautiful at the same time. By allowing others to ride the waves with you and your kids, tapping into resources and honoring your grief, your family will be grieving in a healthy and life-giving way.

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.