Experts agree that one of the most positive things you can do during your child’s life is focus on making memories. Having those wonderful shared experiences you have enjoyed with your child will not only help you to remember your time with your child but can act as bonding experience for the whole family in the present as well as the future.
“Making Memories” is a document created by Sharon Thompson, mother to Victoria Thompson, with advice from The Mothers of The Extra Special Kids Ireland Facebook page. The document details how and Sharon and other mothers have approached creating their own memory boxes.
Download: Making Memories
This documented was written by Sharon Thompson and draws upon her’s and her husbands experiences during the life of their daughter, Victoria Thompson. It takes a retrospective look at the time they spent in palliative care with their child and lists things they wish they knew from the very start.
Link to download: Things We Wish We Knew
Together for Short Lives family resources are created to support anyone who is caring for, or has cared for, a child with a life-limiting or life-threatening condition. They are free to download from their website, but many are also available in hard copy should you need them.
Link to website: Family Resources
The document is written in a simple question and answer style format, and includes some of the key questions or concerns regarding critical care.
Link to Download: A Parent’s Guide – Making Critical Care Choices for your Child
Learning that a child has a life-limiting illness can be devastating. After learning the typical prognosis for the disease, it is not unusual to worry about the future and anticipate what’s to come. But with a slowly regressing illness, there is a lot of time to understand what you will need medically and emotionally. There will be time to connect with others and gain support; there will be time to explore treatment methods.
Link to Download: Toolkit: Parenting a Child with a Life-Limiting Illness
The Pediatric Starter Kit offers advice and provides stories from parents and palliative care specialists who have been there. It provides questions that can help parents navigate the approach to the conversation based on the personality and cognitive level of the child.
Link to Download: Pediatric Starter Kit
Spiritual, religious and cultural wishes explains how spirituality, religion and cultural backgrounds can play a big part in shaping families’ wishes, and aims to give parents the confidence to ask professionals to care for their child in accordance with their values or beliefs, whatever they may be. It also explains the role of the chaplain or spiritual care team and emphasises that they are there to help everyone, regardless of faith.
Link to Download: Spiritual, religious and cultural wishes
