Hello there, let me introduce myself. My name is Melanie, and that beautiful little man is my son Theodore- we call him Teddy. I would like to let you know from the beginning that whilst I know with my whole being the intensity of love that a parent feels for their child, I do not know what it’s like to hold the knowledge that you will outlive them.
I have worked around death, specifically that of children, for almost a decade. I suspect that depending on where you’re coming from, that sentence may fill you with different emotions. Perhaps you have never thought about the death of children much, and you can’t imagine why anyone would want to work in that area. Perhaps you have had to think about it too much, too closely, and that sentence has resurfaced some well-known feelings. Or perhaps you also work in children’s palliative care, and you know what a beautiful honour it is to bear witness to both the light and the dark side of such a time in people’s lives.
I have a few degrees, but there is little wisdom in that. Knowledge, yes, but not really wisdom. I am in the fortunate position of being a gatekeeper of other’s wisdom. Through the experiences I have had, the families I have known, the journeys I have witnessed, and the stories I have heard, I can relay to families ways of experiencing, expressing, celebrating, and living that people walking a similar journey have found useful. I am a huge believer in the power of peer support, of connecting with a tribe who understand from within the journey you are on. Whilst I am not one of that tribe, I have learned ways of supporting that connection through my work, and hope to be able to encourage other professionals to do the same.
I am passionate about families going beyond coping, to a place where they are truly living the fullest life possible. This is not about a denial of hard times, in fact, it’s more about embracing them. It’s about genuine expression of emotion, which will ultimately lead to the knowledge that you have fully played the cards you were dealt, jokers and all. On dark days, it is about being gentle with yourself, recognising your need to feel and express the darkness, and knowing when to come up for air. In the lighter moments it is about creating and embracing the joy and love that comes with life and children. I have found this to be true for any situation.
And I suppose I told you that so that I could tell you this- I’m not an expert. Your counsellor is not an expert. Your doctor, your social worker, your occupational therapist, your surgeon- they are not the experts, not on your journey. If you work in this field, it is good to be reminded of this, to keep the balance as it should be with families. If you are living with and loving a child with a life-limiting condition, I would like to tell you- and I hope not for the first time- that you are the expert of the journey you are on. You know your family best. You know your history. You know your hopes. No professional would argue with that, and I hope that you enter into these interactions with that confidence in yourself, and trust in your team.
So experts (and clinicians) I would like to invite you to come with me on this blogging journey. I hope to bring to you my experience of what to expect when you’re expecting to say goodbye, tools that I have seen to be helpful, and also my reflections on how positive psychology can inform the theory and practice of living with, loving, and losing a child with a life-limiting condition.
Melanie Rolfe is a mother, a wife, a dreamer, a dancer, and a doer. She has worked in the not-for-profit sector for the best part of a decade, supporting children, adolescents, and families who are living with a serious illness, life-limiting condition, or the loss of their loved one. Her experience is in psychosocial care and her passion is for empowering every member of the family to live the fullest life possible. She holds a bachelor’s degree in psychology, a graduate certificate in adolescent health and welfare specialising in oncology, and is currently studying her Masters in applied positive psychology. She advocates for families as their own experts, and hopes to be the vessel to share the wisdom of the families she has worked with.