There is an unmeasurable undoing following the loss of a baby or child. While you know you are not the first person to feel the guttural pain, the emptiness, the shock, and the confusion of this out-of-order loss – you feel alone and lost. You find yourself searching for stories and words, that resonate and validate the feelings you are overwhelmed by.
Over time you might find that journaling, speaking, creating, contributing, and connecting with others helps you to integrate your grief and create positive change. You learn that grief is love with nowhere to go. So you seek out opportunities to extend that love towards making the experience of other families that little bit less lonely. Opportunities to improve care.
In the acute days, weeks and months after my loss, I was carried by stories shared by others through baby loss profiles on social media. As much as I hated having to join the group no one wants to be a part of, they are the best-worst group to be a part of. I continue to be inspired by the waves of change bereaved families, and passionate researchers and perinatal health professionals, are able to create together in honour of the babies we wish were still here.
For myself and others, being involved in the establishment of the Bereaved Parent Advocacy Committee is about creating a lasting legacy for our babies through improved support for others, and advocating for change through research initiatives. Our unique, and shared lived experiences are what guide us to step out of our comfort zones and be courageously vulnerable.
I am so grateful to be able to connect with others face-to-face to work together guiding pathways to support parent involvement in perinatal care and research. To keep building on and growing positive outcomes and opportunities to involve bereaved parents. I am especially grateful for the connections I’ve been able to make with those parents who have been part of my own grief journey following the devastating loss of my daughter, Willow, through termination for medical reasons.
Thank you to the Stillbirth CRE and their sponsors for creating safe spaces and events to involve bereaved parents from all lived experiences. Being able to attend a workshop to develop a framework for parent involvement was a full-circle moment for many of us, and while it was daunting to speak at and step beyond the screen into an in-person space, it was so encouraging to know that our presence had an impact. That our voices and experiences matter. That our babies matter.
It was emotional and inspiring in the best way seeing so many dedicated individuals and organisations locally, and beyond our shores – creating waves of change.
-Jules
Level 3, Aubigny Place
Mater Research Institute
Raymond Terrace,
South Brisbane QLD 4101
The University of Queensland Faculty of Medicine