This morning (21 days in and 3 hours from home) the nurse casually asked if I wanted to learn to do something. Tbh, I’m tired, feeling stuck in a rut and wasn’t listening.

She explained how I could feed my son from a tube. I almost cried.

We lost a full week of EBM when there freezer malfunctioned (I sucked it up cause he’s alive so you know perspective) then with the stress and not being able to try tired him the milk went after another 3 days of less and less per pumping session until I gave up. It wasn’t worth it, if I was near home and could have a little peace maybe it would have.

Everyday I wake up in the hostel on a shit bed, hoping maybe we get into RMD house (shared bathrooms suck long term) our room is opposite the laundry and people run shit any time despite a please between x and Y hours sign. Banging doors all hours.

I know we won’t have him home for Xmas and coming to reality with that has sucked but ATM I’m withdrawing.

I’m posted into holding him when someday I don’t want to. Fiancé won’t change a nappy (I just do it) but he’ll hold him.

I don’t want to see social workers unless they are organising our return to 1.5 hours from home. I barely listen to the drs in the morning cause he’s stable but not enough to travel so always the same lines. Let’s check later in the week etc.

I don’t feel bonded to him but I love him. He’s adorable.

Fiancé is shooting me pushing me to eat but I don’t want to. Tired of food.

He takes us out to the shops n it’s nice but I hate going back.

I’m sorry for anyone who has lost a child and would rather have the chance they survived. I realise I’m selfish… hence I’ve bottled it up for over a week.

He goes home eventually I know.

And another thing, I’m over Christmas cause knowing he will be in a hospital took all the fun out of it. Family asking me what to get him - home! Don’t ask me stupid questions I don’t care about….

I haven’t seen my 8 year old in 4 weeks (being 3 hours away him being sick) and I might have to rehome by mini panther if we have allergies with hernia related small lungs.

Try to focus on the small wins… I did for the first 2 weeks. Day by day. Dressing removals etc. doesn’t work anymore.

I play my switch at night or try to I just don’t care. I know daylight comes and we go round again.

I’ve got a notebook to get things out of my head but cautious how I word things. Don’t need relationship problems too.

end rant