Every parent’s worst nightmare is to outlive their child. In the face of unimaginable loss, we embark on a journey of grief, but within that darkness, we also discover the enduring light of love, remembrance, and the strength to carry our child’s spirit forward. In this articlue, we provide survivorship guidance and grief care tips for parents coping with the loss of a child to a pediatric brain tumor.
The Pain of Survivorship
Parents who have lost a child, especially to a devastating illness like a brain tumor, often face a multitude of survivorship issues that can be emotionally, mentally, and physically challenging. These issues may include:
Intense Grief and Emotional Turmoil: The loss of a child is one of the most profound forms of grief a person can experience. You may grapple with intense sadness, anger, guilt, and a sense of emptiness. Coping with these emotions can be an ongoing struggle.
Mental Health Challenges: Grief can lead to various mental health issues, such as depression, anxiety, post-traumatic stress disorder (PTSD), and complicated grief. These conditions may require professional counseling or therapy.
Marital and Relationship Strain: The loss of a child can strain even the strongest of relationships. You and your spouse may grieve differently, leading to misunderstandings and conflicts. Navigating this loss together requires open communication and support.
Physical Health Impact: The stress of grief can have physical consequences, including sleep disturbances, changes in appetite, and increased vulnerability to illness. It’s essential to prioritize self-care and monitor your own physical well-being.
Social Isolation: Grief can lead to social withdrawal. You may find it challenging to relate to others who have not experienced a similar loss. Building or maintaining a support network is crucial.
Financial Impact: Medical bills, funeral expenses, and time off work can create financial stress. Navigating these practical issues while grieving can be overwhelming.
Existential and Spiritual Questions: You may grapple with questions about the meaning of life, faith, and the existence of an afterlife. Exploring these existential questions can disrupt or initiate the healing process.
Survivor’s Guilt: You may wrestle with feelings of guilt for having outlived their child. You may question why their child had to suffer and why you are still here.
Parenting Other Children: If you have surviving children, navigating your grief while caring for their needs can be exceptionally challenging. They may worry about how the loss of a sibling will impact them, and you may not have the emotional strength to help them navigate their feelings.
Coping with Grief
Grief is a personal journey, with no right or wrong way to do it. But psychiatrist Elisabeth Kubler-jRoss identified five stages of grief in her seminal book, On Death and Dying:
- Denial
- Anger
- Bargaining
- Depression
- Acceptance
Keep in mind, no one goes through these stages in the same way or order. You may be able to move quickly through them. You may have already gone through many of them as your child approached the end of their life. But you can also get stuck in any of these stages, which can stall the healing process.
10 Tips for Survivorship and Grief-Care
Grief-care is crucial for anyone who has experienced the loss of a child. While it may be challenging to prioritize self-care during such a difficult time, it can significantly contribute to your emotional and mental well-being. Here are ten tips for navigating grief and finding your way back to life and joy:
1. Set Realistic Expectations
Understand that grief is a lifelong journey, and there is no “right” way to grieve. Nor is there a specific time frame for getting over the death of a child.
Be patient with yourself and allow yourself to feel and express your emotions without judgment. Initially, you may experience severe, intense emotions. Over time, they may subside, but you could still experience waves of grief for 18 months or longer.
Grief reactions you may experience include:
- Shock, confusion, and disbelief, even though you knew it was coming
- Overwhelming sadness and depression, making it impossible to handle daily tasks or get out of bed
- Perpetual sadness, or its opposite, the inability to cry at all
- Guilt for failing to protect your child and feeling that you should have done things differently
- Intense anger and bitterness at the unfairness of life
- Resentment toward other parents with healthy children
- Deep despair and wishing to be released from the pain
- Questioning your faith or the meaning of life
- Dreaming about your child or feeling their presence nearby
- Intense loneliness and the feeling that no one can truly understand how you feel
These are normal reactions, and they should lessen over time. If, however, you find yourself unable to return to normal life or think about hurting yourself to end the pain, please talk to your social worker or counselor.
2. Lean on Your Support Network
Healing doesn’t happen when you isolate yourself. Reach out to friends and family for emotional support. Let them help you, and ask for help when you need it. Good friends can help with daily tasks or by offering a shoulder to cry on.
There are apps that can help you connect with your network.
Lotsa Helping Hands gives you a centralized place to coordinate meals and help from friends and family.
New Normal Navigator App supports parents and caregivers as they adjust to a new normal after returning home from the hospital.
3. Seek Professional Support
A 2019 Swedish study found that all mothers and 90% of fathers said they needed support from social workers nine months after losing their child. After five years, only 30% of mothers and 6% of fathers still felt the need of support from professionals.
The road to healing takes time, and you’ll benefit from working with a grief counselor or therapist who specializes in bereavement. Professional support can provide a safe space to process your grief and develop coping strategies.
Hope Amidst Sorrow: A Bereaved Parents Seminar was delivered in 2022 by Dr. Chris Feudtner, Chief of General Pediatrics at Children’s Hospital of Philadelphia for parents who have lost a child to cancer.
4. Join a Support Group
It can be comforting to share your feelings and experiences with people who understand. Ask your social worker if there are bereavement support groups near you.
You can also find bereavement groups online. For example, the Compassionate Friends offers friendship, understanding, and hope to families grieving the death of a child. It has more than 500 chapters and more than 40 private Facebook pages and is the largest self-help bereavement support organization in the U.S. Use their Chapter Meeting Locator to find a chapter near you.
5. Prioritize Your Physical Health
Grief can make it difficult to take care of yourself. Try to maintain a balanced diet, engage in regular exercise, and get enough sleep. Physical health can positively impact your emotional resilience.
A study by BMC Public Health found that prioritizing physical activity after the loss of a loved one can alleviate grief, build resilience, provide social support, and strengthen your sense of self.
In the study, six themes were identified. Physical activity was seen as:
- Therapeutic
- Providing an emotional outlet
- Increasing the sense of social support
- Building confidence
- Helping you find yourself
- Improving physical and psychological health and wellbeing
6. Practice Mindfulness
Mindfulness and meditation can help you stay grounded and manage overwhelming emotions. Simple breathing exercises or guided meditations can be beneficial. You may also want to write your thoughts and feelings in a journal.
Mindfulness, in whatever form you choose, can be a therapeutic way to process your grief. Here are a few resources to get you started:
Create to Heal is an app that helps you heal by taking you gently from your head to your heart. It has music tracks, guided meditations, pieces of art, and inspirational messages. Tested in hospitals and cancer centers over a five-year period.
The Mindfulness & Grief Institute offers heart-centered support. The site is run by Heather Stang, a certified yoga therapist, recognized mindfulness and grief author, and leader of a mindfulness-based online grief group, Awaken.
7. Keep the Connection Alive
There’s comfort in continuing the bond with loved ones who have passed. A “continuing bond” is a concept in bereavement studies that frowns on the idea of total detachment from the lost one. Instead, it suggests you can adapt to the loss more easily by maintaining a connection through memories, actions, and symbols.
Consider creating a scrapbook, memorial website, or a special place in your home where you can honor your child’s memory.
Create meaningful rituals to remember and honor your child. You might light a candle for them on special occasions, celebrate their birthday, visit a place that was special to your child, or host an annual event in their honor.
Read the book Continuing Bonds: New Understandings of Grief by Dennis Klass.
8. Find Moments of Joy
Grief can be so overwhelming, it feels like you’ll never find happiness again. You may feel guilty about finding happiness without your child. But it’s important to move forward with your life.
The key is to start small. Allow yourself to experience moments of joy or happiness when they arise. In Still Standing Magazine, one writer shares her journey back to joy:
“When something was happening that I knew should make me smile, like my girls dancing on the coffee table in their Halloween costumes, I made a choice. In my mind, I first identified it as a happy moment. Then I thought to myself: I can smile, I can laugh, and that’s okay.”
You may want to start a gratitude practice. Every day, name three things that happened you’re grateful for. In particular, try to identify moments that made you smile (or could have).
Pay attention to moments that bring good feelings. Savor them. Take pictures to help you remember. Little by little, you’ll find it easier to connect with those good feelings, and joy will return.
9. Limit Stressors
According to Harvard Medical School, chronic stress is common during acute grief and can lead to a variety of physical and emotional issues, including depression, trouble sleeping, feelings of anger and bitterness, anxiety, loss of appetite, and general aches and pains.
“Ignoring these symptoms can put you at risk of heart attack, stroke, or death in the first few months after losing someone,” says Dr. Eric Bui, associate director for research at the Center for Anxiety and Traumatic Stress Disorders and Complicated Grief Program at Massachusetts General Hospital.
To minimize these outcomes, it’s important that you remove unnecessary stressors from your life. Do your best to manage work-related pressures or commitments that can wait. Prioritize self-care over obligations.
10. Honor Your Child’s Legacy
There are countless ways to memorialize your child:
- Through art
- Through writing
- By identifying special places or memorial sites
- By giving
- By starting a foundation or fundraiser
A full list of ideas is in this ebook by The Compassionate Friends.
The Larson family decided to start a foundation to honor Matthew Larson after his passing. But many families don’t feel led to run a foundation. They may prefer to create a memorial for their child, write their story, or host an annual event, such as #TaubStrong, or make a donation in honor of their child.
There’s no right or wrong way to remember your child.
And IronMatt is here to support you. If you want to do a fundraiser in honor of your IronKid and donate the proceeds to research into pediatric brain tumors, let us know. It’s a beautiful way to honor your child and protect all IronKids from this devastating disease.
Survivorship Is a Choice
The grief of losing a child is overwhelming. You’ll never forget. You’ll stop missing your child. But you owe it to them to celebrate life: theirs as well as your own.
Understand that grief is a lonely journey. It takes us each on a different path. But ultimately, it brings us back to life. Use the ten tips we shared in this guide to help you navigate grief and the pain of surviving your child’s cancer battle. And if you need help, please explore the resources we share here or contact us.
Together, we’re strong. IronKid strong.
