How do we ask C&YP about this?
Joy- A feeling of great pleasure, and happiness.
Does limited joy impact on how we feel each day, how we cope with things when they are tricky, does it allow us to take a breath, or do we struggle even if we think we have it- but it's so hidden that the struggle in finding it is to much.
For C&YP that have experienced loss or fear, to ask them what they do that gives them joy, perhaps is the hardest question to be asked, in fact some might think that it is wrong to ask such a question, because in some way you are not respecting or honouring the loss- I feel to honour and respect, you must listen and there must be hope, that through sadness and the darkest times, there were moments of joy, and that there will be again.
Flowers, colour, art, music, smells, food, texture, photographs- all evoke deep feelings- can joy be found in these?
Each day I do my best, and each day I strive to make a difference.
The following day I strive to do my best, again, and so on.
This week I had the privilege to support and work alongside a young person who was facing a challenge.
Several years of ill health and lots of tests had left a impact on this young person, the ability to identify happiness and joy was the challenge, the question had never been asked before.
Initially - I received some strange looks........... but I continued to support this pathway.
The reason I asked - I wanted to empower this young person to draw on joy, happiness and the feelings these evoked, to celebrate these "moments of joy" and use them to support energy levels, pain management and relief and strength to ask for support.
We spent several "bite sized sessions" together, talking through what was joy, and how each person found it.
I was asked if there was such a thing, and how could it possibly help me, "I have been living with this illness for 8 years".
During these "bite sized sessions" I listened, I was present, I never once interrupted, there were moments of silence, they did not need filling, and slowly I built trust, I showed understanding and I shared my "moments of joy"
I was able to do this- as I too understand the world of living with a disability, of challenges, of changes a person has to make.
It is not very often that you feel as a HCP you are able to share such intimate parts of your life with a patient, but when you work alongside C&YP it becomes who you are and how you work.
As we know C&YP are honest, they ask questions, and I am always honest- no matter what the outcome or impact.
We discussed happiness, the feeling this gave, the colours used to describe happiness, how did our facial expressions change when you had a "happy thought".
Slowly together with family members we begun to build a "Tower of Joyful Jenga" , music, activities, food- all things that created happiness and a feeling of joy.
It all sounds so simple- and yet so difficult all at the same time, to plug into a C&YP's deep emotions and feelings is not easy, but then again, how easy is it for them to share that with HCP's.
I ask a simple question to open up conversations with C&YP
" what do you do, watch, listen to, or experience to give you a deep sense of joy"
As HCP's we need to be ready for the answer- to support the journey, and not always want an outcome, but to have the conversation- as this will be the start of their journey.
This week I have read many things, some joyous, some remarkable, some uplifting, powerful and upsetting.
I have been amazed at strength and astonished at bravery.
I thank them for their honesty, and for the impact sharing their story has had.
I have also been asked to share my work, and how I ask those difficult questions, I feel at times overwhelmed, but also joy in the fact that I may just share a little joy with someone else.
My shares for this week..... Thank You for your honesty and for sharing- the impact you have is priceless.
Mefirst.org.uk- brilliant resource for HCP's - and a platform for C&YP.
The Brandon Trust- visited an amazing photography exhibition in London celebrating the trusts work and promotion of positive and freeing change in disability.
Headspace-perspective.com - Raising awareness of birth trauma, and premature babies, and of life and loss.
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