Maverick grief - Igniting a global grief revolution for change
- Jennifer Donohoe Grieving Mother, (Bachelor of Business - Communications, RN)
One of the greatest travesties of our time is the avoidance of grieving parents and siblings along with the medicalising and pathologizing of grief. I am beyond shocked by what we have endured in the community following the passing of our son and I see no sense or value in sweeping this issue under the carpet.
Our son passed at just 12 years of age. Sam did not “lose his battle” with the brain tumour as per the predictable cliché that is indoctrinated in this society. Sam continued his refreshing sense of wonder of life and lived with his life brain tumour as he did his life before diagnosis - with his usual fearless sense of adventure, love, loyalty, dignity, spirit, humour and grace - his impact unforgettable and eternal.
A diagnosis of brain cancer brought to light the gravest injustice that a child’s life is not sacrosanct and above politics in this country. By not committing the significant and sustained, long term funding it requires to alter a fatal prognosis, unchanged for half a century, the Australian government should be held to account for the deaths of over a busload of children in this country, shattering thousands of lives. Every. Single. Year. This will not change, unless there is lobbying of governments to commit to the significant, sustained funding for research, and appointing an independent watchdog to ensure that continuity of funding is protected.
The token gesture that is the current funding for research, has brought our shattered hearts, our shattered lives to this point. In trying to survive the death of our son, we have encountered a level of what can only be called out as discrimination and prejudice in our society toward parental grief.
Prior to our tragedy, we had good friends and a healthy network. However, in the face of the unspoken tragedy of the death of our child, we were maligned - suddenly by some, and a gradual, painful regression by others. As most grieving parents will attest, while you do all you can to survive each day, the impact of avoidance from those you trusted is the second wave of utter trauma. How much onslaught of pain can we survive? I have seen a few speakers on TED X speak from the heart on this, but essentially communities have no idea of the existence or magnitude of this issue. Many drastically underestimate the impact of their actions on grieving families. What astounds me is the inability of others to simply apologise if they hurt you, which given the stress and sorrow - will inevitably happen. Unless we dutifully accept 'sympathy-card' style of responses and speak no further of our son – we are abandoned.
This lack of care can impact by resulting in the feeling of invalidation of our grief, which can cause a catastrophic downward spiral. The discrimination, isolation and deep misunderstanding of grieving parents and families IS a vital issue and I stand in the courage of my conviction to do what I can to bring this into the public arena. Grieving parents are the only ‘experts’ on their own grief.
Grief is not a mental health condition. Grief is not an ailment to ‘recover’ from. Grief, when your child dies, does not travel through an upward trajectory to a definitive end (that belief is what is convenient for others), Grief IS love. How we manage to survive becomes ours to manage and what works one day, may not work the next. Others must resist the urge to give unsolicited advice or ‘fix’ what can never be ‘fixed’. Everyone wants the person back before their child died. That will never happen. And this is what many who love you, do not accept. Those who want your grief to ‘end’ only serve to minimise or diminish the love we have for our children. What others say, and what a grieving parent hears, can be so different.
How you grieve is how you love – utterly on your own terms. You don’t need to defend or validate how you continue to love your child who is not physically here on this earth. Others whose children are physically here, are not expected to justify how they love them.
There are structured organisations or grief support groups, however they are not for everyone, and from my experience, it feels that it is a case of preaching to the converted. It is society that needs to get these messages. There is little out there to raise awareness of the crushing impact others can have on parents and siblings who live with children with cancer and those who are grieving.
It must start – and it has to continue so a genuine change of mindset can start to shift, and impact of awareness can gain traction.
Parents who have children with brain cancer and those parents who grieve, are simply among the mightiest in our society for what they endure, and they deserve the utmost respect from others. What is currently trotted out by media and organisations needs an almighty pushback. What it takes to survive each day for us, is the epitome of what is humanity - what is dignity - what is respect - what is love.
We must hang on. We must become revolutionaries of truth to achieve genuine understanding from our families, friends and communities for what we endure and how they can support. I welcome all enquiries or for anyone who wishes to contact me through www.maverickgrief.com.
If you would like to share your story with us, please get in touch, we would love to hear from you!
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