The Overlooked Grief of Diagnosis, Change, and Lost Expectations
Contributed by Holly Gainsboro.
Grief Is More Than Death
Many believe that grief is reserved for those whose loved ones have died, and don’t realize that there are over 40 life experiences that can result in a grief response.
Grief is the feeling caused by the end of or change in a familiar pattern of behavior.
A Diagnosis Changes Everything
There is no bigger change for a family than their child’s brain tumor diagnosis – even benign is not fine.
The hopes, dreams and expectations parents have for their children, and themselves suddenly take a dramatic turn down an unfamiliar, unexpected, and most certainly unwanted path.
Grief is the normal and natural response to this change, so please give yourself permission to feel the flood of those emotions.
You may feel like there is no time to grieve – there is work to be done, like doctors’ appointments, childcare for your other children, researching treatment options, and more.
Self-care is the last thing on that “to do” list, and only adds more burden on your shoulders.
Just know that your feelings of grief are okay and real for you.
Allow yourself to sit in that space of sadness while being proactive in your child’s care.
Grieving the Loss of Hopes and Dreams
When a loss of any kind is experienced, one of the things that we grieve is our hopes, dreams, and expectations of what life was supposed to look like.
All parents have a vision of what life will be like after having children—what they will look like, their personalities, their activities, their milestones.
Examples of Hopes and Dreams That Might Change
Do some of these hopes, dreams, and expectations resonate with you?
- Having your child take part in their dance recital
- Playing t-ball, softball, baseball, soccer, or other sports
- Being a cheerleader or gymnast
- Going to birthday parties
- Attending day/overnight camp
- Slumber parties
- Joining friends at school
- Attending scout meetings
- Attending religious services
- Graduation ceremonies and other life events
It is perfectly normal to have those hopes, and equally normal to grieve that some of them may be curtailed or unfulfilled during your child’s illness and treatments.
Why Grief Is So Misunderstood
In our society, we have not been taught about grief—how to grieve, what grief is, or what it can look like.
We only know what we observed from those who came before us.
Our grief is as unique and individual as our fingerprints.
Even if you know other parents whose children have cancer, their grief will not be the same as yours.
Even your partner or spouse may grieve differently than you. That doesn’t mean anyone is doing it wrong.
Common Myths and Misinformation About Grief
These are phrases and ideas that are often shared but can be deeply unhelpful:
- “Don’t feel bad they have treatment options” or “they’re doing so well”
- “Be strong – you must be strong for your spouse/partner, your other children, yourself”
- “Keep busy don’t dwell on it”
- “Grieve alone don’t let anyone see you cry”
- “Give it time it will get better”
- “Stay positive – chin up, you got this”
Can you think of some other things that have been said that weren’t helpful, and made you cringe?
The Impact of Well-Meaning Platitudes
While these comments are often well-intentioned, they can do the opposite of what grievers actually need. They don’t validate your emotions or give you safe space to feel. This can lead to even greater isolation. Caregiving is already exhausting being expected to wear a “happy face” only compounds the fear, fatigue, and loneliness.
Toxic Positivity and Emotional Suppression
Caregivers often ignore or stuff their grief.
Wanting to be hopeful is okay as long as you are honest with yourself about your emotions.
We live in a toxic positivity culture where “feeling bad” isn’t honored but grief must be felt.
We try to comfort others by hiding our pain, but this only adds pressure.
Like a tea kettle with no release valve, your feelings will eventually erupt.
What Grief Really Is
- Grief is the normal and natural reaction to the change of or end in a familiar pattern of behavior.
- Your feelings are normal and natural.
- What we’ve learned about grief and how we’re supposed to handle it is often what’s not helpful.
What You Can Do for Yourself
- Find your safe people
- Seek support from a therapist, counselor, or grief recovery specialist
- Breathe and remember to exhale
- Deep breathing calms the amygdala, which controls the fight-or-flight response
- Take one moment at a time
Support Is Available
Holly Gainsboro has received certifications as a Grief Support Specialist, Grief Educator, Grief Specialist, Grief & Loss Provider, and more.
Learn more or reach out:
goldenheartgrief.com
goldenheartgrief@gmail.com
Holly is available for one on one sessions. Find out more or sign up.