Resources for the parents of a newly diagnosed child
Inhale. Exhale.
We know you are in shock. Your feelings are allowed here, the anger, the dark thoughts. The guilt.
You are not alone - we have been here too. To help, we have curated a list of resources that we wish we had.
Join our support group here
Read stories from other families here
The stuff you don’t dare ask yet or even think about yet. (These thoughts are normal)
Whether you need this now or file it away for another time. Below are some resources that detail what it is like to care for a child who is dying or may die and seeks to answer some of the taboo questions that go through a parents mind. By parents who have walked this journey.
Caring for an infant with a life limiting or terminal diagnosis
An educational series created by parents for parents
The modules developed by Tara, Melissa, Priyanka and Rachael and Jonny include videos, podcasts, reflective journals and videos developed generously by several health professionals.
We hope that by sharing with you our children’s stories, our coping strategies, what’s helpful, ways to bond with your baby and make memories, answering some of those questions and hard thoughts that you might find some strength, some light, some hope and less fear of what paediatric palliative care looks like for your family.
More here
a little help from Lily
A practical resource companion for child loss and paediatric palliative care.
Parenting a child who is dying is isolating. It wasn’t until later that we discovered the books, podcasts, journals, and resources that could have brought us comfort. A little help from Lily is our offering to you, to help navigate meaningful resources, memory-making, and the non-medical support available for the loss of a child, whether it is sudden or something you are tragically preparing for.
Life Loss and Love podcast
A podcast for families caring for a child who is dying
This podcast series focuses on the experience of parents of children who have died or are likely to have a short life. Despite advances in health care, children and young people still sadly die from a range of life limiting conditions. The parents in this series have been supported by palliative care teams to face multiple challenges in caring for their children. These parents bravely share the love and beauty of their children and the joy and sadness of their individual experiences. They hope their voices can support, inform, and better prepare other families who may need to face similar challenges.
If you have also received a disability or additional needs diagnosis
These books may help
Special: Antidotes to the Obsessions That Come With Your Child's Disability by Melanie Dimittt
We're Going to Have Fun, Dammit: Transparent Tales of Thriving & Struggling in the Extreme Circumstances of Special Needs Parenting by Mary Susan Mcconnell
These podcasts