It's a bit different socially at hospice, it's not like NICU or PICU where you band together in hope. In hospice, I struggle. I don't want to take on another story of woe, another story where everything has been tried and the only avenue left is quiet acceptance. It's hard to hear. Now, when new people arrive at the hospice in the evening, I tend to eat fast and leave the communal table before the stories come out. It's hard not to hear though. The brother with terminal cancer, the boy who isn't doing well, the transfer from intensive care.
In contrast, you can tell who the regulars are, the ones here for respite. They're cheerful, and talkative. They smile and laugh and know all the nurses names. But once you get talking, they have stories too.
Everyone has a story here, and none of them are nice stories with a happy ending. They're stories of hardship. They may have been told with a wry grin but I'm still struck with how everyone moves forward with grim determination. That the children here are described as little fighters thanks to the struggles they've had. No one chooses to be at hospice, no one chooses to be on the hospice service. No one chooses the path we're all walking.
I struggle. The children here are either very very sick, or profoundly disabled. I feel like I'm looking at Kai's future and it's heartbreaking. It's so so so heartbreaking. Letting go of the future we imagined for our baby and ourselves, grieving the loss.
Being in hospice is quiet, and sedate. But now there is no loud distraction from all the fear and grieving.
Please wake up baby. Please stop seizing. We're giving rescue meds 15-20 times a day. You're breaking our hearts little guy.
Ps - very aware of how doom and gloom I am right now. It's depressing for me to be in this particular place as I'm sure it is for you to read about it.
Pps - justgiving.com/mikaere-xmas So so so grateful to everyone that has donated! We're almost at £7k, which is unbelievable!! We're so grateful (and glad that together we can stick it to NKH)