Finding our space; Or how to live

In the headlong rush to Newcastle, we are told the hospital can provide us with a flat to stay in. OK, we have to share a bathroom and kitchen with another couple but we have our own bedroom and lounge. I start thinking "holiday cottage" for the packing: towels, tea and coffee, a couple of ready meals to see us through as well as nappies, wipes, baby toys, Bumbo (because at 3 ½ months he's sitting up nicely), bath seat - you name it, we pack it. The hospital says we could be up there for a week or two for tests and assessment, but the nurse caveats this with "quite some time": read "months". The car is full. We are full. After being bombarded with more information than we can handle (at no point does one ever, being British, turn to the nurses and say "Woah back up there a moment, Sister. This is more than we can take. We don't know what you're talking about. Our child is HEALTHY." We just keep nodding and acting like this is totally OK, totally alright with us. Except it's really not), they take us to the flat. It's grim. It's beyond grim. It's where prisoners might be put to accommodate themselves to life on the outside. We have no bedding so we're sleeping on hospital linen and sheets which are cold and so starched that every time one of us rolls over, it wakes the other up. There are two TVs but neither work. There is a dirty old mop in the bathroom and the hot water pipes run straight up inside the shower so when you reach to pick up your shampoo, you burn your bum. There's no loo roll. 24 hours later, we can take it no more and Matt heads out to find a flat. We are working on the assumption with our new-found overflow of information that we could be here 4-5 months, so he finds immediately and thankfully a 2 bed flat in the centre of Newcastle, 20 mins walk from the hospital. It's fresh, new, clean and a refuge. 

Because that, it turns out, is really bloody important. Within a day, we have learned that you have to come back in the evening to somewhere nice. I sound ungrateful, but the hospital flat was somewhere you would want to end your days (I think of the old man in Shawshank Redemption who hung himself because he couldn't cope with life on the outside), not somewhere you find the resources to continue them.

And the other thing is our bubble. Sam's isolation cubicle. For the next 4-5 months we will live out our days in a room. The ward is indescribably cheery. Bright, clean, colourful and decked like all get out for Christmas. But he has a bed under a clean air-flow in a pressurised room and not much else. Slowly we learn the routine. Before we get to him, there's a change of shoes and a handwash. Then when you go in, you can't step over the blue line to your baby  before you've washed your hands, put on a plastic apron and done a 3 minute scrub in up to your elbows. You can't cross back over the blue line without at least antibacterial gel and/or a handwash. If you leave the room you have to go through the whole process again. Your phone, water, watch must stay beyond the blue line.  My hands start to break down with the constant washing and my eczema runs riot within 48 hours. He's only allowed board books with no fabric, none of his Lamaze toys or anything that won't withstand a 60°wash. His Bumbo has been deemed not hygienic enough. His 3-6 month clothes shrink within two days and we have to bring up his 6-9 month outfits. Gradually we add a Clinelle-wiped playmat with approved plastic toys and books, a washable bouncy chair. These make all the difference because it seems Sam is all about the standing these days. Changing his nappy involves gloves and freezer bags and conti wipes and more palaver than you would believe possible.

Your day shrinks to manageable half hours, like Hugh Grant in About a Boy, marked by episodes of Frasier, Friends and Modern Family. I'm starting to really like the look of oversize check shirts and combat trousers again. I might grow my hair back to a Monica. Every nurse or doctor that comes in to do obs or chat to you about Sam is both welcome as a distraction and unwelcome as they come with yet more information or diagnoses. And they all love Sam. LOVE him. He is the well-est child on the ward: fat, bouncy, chatty and unendingly smiley. The day nurses love him because he wriggles so much they can't get accurate readings for his oxygen saturation and blood pressure; the night nurses love him because he eats and then goes straight back to sleep. The doctors freely admit he is a puzzle because he is pink and thriving and healthy where SCID kids are grey and thin with bad skin and permanent diarrhoea. We tell them we feel like we have brought them a healthy child they are going to make poorly to make better; if we had had a typical SCID kid, we might be so much more grateful to be on this ward.  We get the distinct impression we've been really fucking lucky to have got him this far without serious issues.

You might wonder at our not staying the nights with him but it's not encouraged. First, they like parents to be well-rested; it's a long trudge and sleeplessness undermines your resources. Second, they want you to have showered with clean clothes every day. Third, it's a blessed relief not to have to wake up every 2 ½ -3 hours to feed the gannet. Our flat is situated between the cathedral with its quarter-hour bell chimes and the station with all the concomitant city centre weekend noise, but we hear none of it, so wearying is the daytime routine.

So slowly we settle into the groove of a rigorously clean, stripped lifestyle. We are quite literally stripped back to the basics, physically raw with the washing and cleaning, emotionally raw with the constant reminders of Christmas and family unity at every turn whilst we can't even allow our faces to touch our baby's head. We can't kiss him goodnight. We can't blow raspberries on his tummy to make him laugh. Because this Christmas, a snuggle from Mama or Daddy could turn him into that SCID kid we have so far escaped from. Keeping him well trumps all.