Its a word that has always been in the background and followed us around from day one. Its a word that we wish not to hear.
The word popped up at a Paediatrician appointment last week for Abbey. Her doctors have started talking about the process.
Abbeys doctors’ want to start the paperwork for palliative care. Abbey is not terminal. It just does not make sense, but we know her life will be shorter. Her doctors know this. We know this.
We won’t look into the future often. We know it will change dramatically one day. I dont want to start the process.
But… we must.
For a week I’ve been going through another kind of grief. A sadness that this step makes it official that my girl won’t be with me forever. That I will outlive her. Paperwork always makes things official. I like thinking I can spend all my time curled up in bed with her cuddling.
Why palliative care?
Abbey is eligible for this service as her life is shorter and its provided for children who will not make it to adulthood.
Starting this process will help in the following ways:
– as Abbey gets older, there is less chance that we will loose services from the child to the adult sector at 16 years. Its just another foothold in the bureaucratic system that is disability services.
– if she does pass away at home, then it will mean the police will not need to be involved, making this event a bit easier on all concerned.
– we can hook into counselling and services that can assist us with this transition.
This has brought into perspective where we are heading next with our girl. It all makes sense, but honestly, if feels icky and makes me sad.
Talking about it does not help. Writing about it does not help. I dont think I want to get use to this next stage.
All we can do, is carry on. Life carries on. Abbey needs cuddles and love. This we can provide in abundance.