Nerves

Things that keep me awake at night:

Sam: I'm 80% sure he's teething and it's affecting his meals. Milk is not enough yet it is all he wants (apart from morning porridge or Weetabix) and so he's back to waking at around 4am for food. That's quite annoying. I can't use Calpol because it could mask other symptoms so I am reduced to Calgel. This is the kind of setback that could reduce me to tears.

Things going well: They are almost going too well. We are going to have to hit a bump in the road soon. I worry about his neutrophil count which tends to go down and, while not something to worry about really, is still something that might need another medicine to help his system adjust. It also tends to be the result of dodgy testing, as it's quite rare in babies who have a sibling donor match and no chemo, but then, nothing about this situation is usual or normal and I see no reason why he couldn't just decide to throw us a googly on that one.

The microduplication of that bit of chromosome: So far, we have a baby who is progressing not just well, but brilliantly. He's (wobbly) sitting up, trying like hell to crawl, interested in books, making lots of different noises and bubbles, eating (in theory) and grabbing things. There is no 5 milestone left not kicked to the kerb. And yet.... who knows what the future brings with this? We have yet to see the geneticist but even the thought induces racing cold panicky heart beats and such fear and dread. I both want to know what he does and doesn't know (and in this case, it's more doesn't than does as it's so rare) and long to be left alone and not have yet another medical professional bring us yet another shitty diagnosis. I'm so tired of revelations about Sam. Of questioning every bit of information, whether it turns out to be of import or not. Of seeing a doctor and watching them check him over and each time prepare myself for some more unwelcome and entirely unexpected news.

Shopping lists: I can't just pop down to the shops to pick things up that I need with Sam in tow. We can't do a busy town centre. I can go round the excellent but extremely unbusy indoor market but I am limited in what I can a) fit under the pushchair and b) carry up the stairs with Sam and the changing bag. So I make lists in my head for Tesco for Matt to fetch. Lists for Matt to bring back or take to Cheshire. Lists of things that could be picked up in town with the least expenditure of effort. Lists that are effectively a vicarious life being lived outside of the flat.

Coming home: I am both looking forward to it and dreading it. All I want is to be home (but see point two, so I try not to really think about it too much) but I am also wary of seeing friends. There will be all this messy emotion and noise (Oh come on... you know there will be) and I sometimes think (like I used to as a kid) how it would be to just be invisible and slip in and out of places and not go through the whole "welcome home" THING. But on the other hand, I so miss my life and I've sort of accepted that's what people DO and I will just get cards laminated with FAQs to hand out along with hazmat suits and boots for visitors. I also just miss laughing. Obviously Matt and I still laugh and Oscar and Sam are quite jolly, but I do miss unweighted, not-really-giving-a-fuck laughing. Also it transpires Matt has no idea how to make a sandwich that doesn't involve cream cheese and therefore that Oscar's sandwich requires buttering BOTH SIDES, so some sanity might be nice.

Noise: Dear God but this city never sleeps. We have a theory the bus stop becomes a taxi rank at the end of the strip of clubs we unfortunately seem to be bordering. And it's the law that the taxis have to use their horns once every 4 minutes to alert everyone in the vicinity they have a job to do. I actually cannot imagine sleeping in my own bed in Tarvin without ear plugs and a pillow over my head. It cannot be that quiet.

That's sort of enough to be going on with. Now I have washing to put away and beds to remake.