- Up at 5.30 for a toilet run. Transfers getting easier. Which is not true at all we’re just getting used to the hell that is transfers.
- Back to bed.
- I sleep. No idea what Oscar does. Up at 7.30, breakfast.
- Not sure what we do for a few hours until Chef and all the boys arrive.
- Hang out all afternoon as a family, complete with tantrums and whinging and tears and teasing and ohmygod nothing has changed but everything has changed all at once.
- Oscar’s teacher and aide come to visit with a massive (purple) box full of treats, story books, activity books, a card signed by everyone in class, cards from individual class members, a present from one girl in his class of a little Star Wars soft figurine because she knows how much Oscar loves Star Wars and thought it was handsome, just like Oscar.
- I get all teary at the cafe where we meet them (in the hospital complex) and am once again blown away by the beautiful people in our world.
- More toilet transfers.
- We move beds in the ward as some of the kids who have been on weekend leave are coming back. I lose my bed.
- A 4am toilet run.
- A 5.30 toilet run for which I tell Oscar to buzz for the nurse. Feel dreadful for the nanosecond before I fall back to sleep.
- Horrendous night due to sleeping on yoga mat on floor – wasn’t worth sleeping in parents room due to Oscar’s anxiety at the mere mention of it.
- Drag myself awake at 7am.
- A morning of wait wait wait as Oscar would say.
- The OT comes – we have a significant issue as to how we’re going to shower Oscar at home. Ongoing discussions, she goes to investigate possible solutions.
- Have I mentioned how incredibly amazing every member of staff has been?
- Chef, Felix and Grover arrive
- Felix has a rare day off from school because its his birthday and Oscar is coming home from school and normally I never allow that kind of thing but at the moment I am too tired to care and feel like the kid needs some slack cut.
- Solutions are found. We finally get the all clear to come home.
- We come home.
- I have told myself when we get home I’m going to sit on the lounge.
- Instead I do random things like take bags of clothes to the charity bin around the corner and take the recycling out to the garbage bin.
- I KNOW
- Felix has requested a birthday dinner of tacos. So be it.
- We have our first toilet transfer. I have absolutely no idea how we’re going to do it when only one adult is around.
- Some of you mentioned a hoist. It’s not that simple I’m afraid. But thanks for the suggestion.
- We rebuilt Oscar’s old bed in his bedroom (after removing all the Lego and bookshelf) as it is at the right height for a transfer.
- I have balled my eyes out twice- once at the end of dinner when there was just so much mayhem and chatter and chaos I thought my head was going to explode. Felix just hugged me.
- The second time was out in the garage when Felix came out to see what we were doing (looking for the screws to reassemble said bed) and I thanked him for being so freaking amazing about having his birthday somewhat overshadowed by Oscar’s homecoming and how he didn’t complain or resent Oscar for it and that we were so proud of him and loved him so much and he was such an awesome kid and sob sob sobbity sob. As did Felix. I made him cry. On his birthday.
- I just feel so bad I didn’t get to make him a cake.
- Anyway, we’re home.