Christmas... How was yours? It wasn't too bad,
considering... I can't say it was everything we ever wanted, although Oscar
racing round the flat saying "This is the BEST Christmas EVER!", meant
at least one of us was fully satisfied. We split the day: I went to the
hospital in the morning and opened Sam's presents - he had an enormous sackful
off the hospital - as well as ones we had bought; Matt went in the afternoon
while I assembled our canapé dinner: I'm calling it "A Taste of Christmas
TM." We drank champagne and opened presents and watched TV and it was as
lovely as it could be, which is to say there was a bit of a gap and we couldn't
fill it.
But now it's done and we can crack on with all that January
has to offer. In 10 days time Oscar will hopefully be going for his bone marrow
harvest (I feel a shade Mrs Coulter about this) and in 11 days Sam will get
that all-important transfusion of stem cells which will hopefully travel
through his currently on-the-dole thymus gland and become precious T cells
which will give him immunity against most of what life has to offer. He'll
never generate his own B cells, so he will probably have to have weekly immuno-globulin
transfusions for the rest of his life, but that's half an hour and we can do it
at home and abroad, so that seems a fair trade-off.
In the meantime, life progresses at the pace of a snail
wading through molasses in flippers. When every day is the same - the only
difference being whether you do the morning or afternoon shift with Sam - time
drifts meaninglessly past. It's like being permanently stuck in post-Christmas
week: there's no sense of what day it is or anything to differentiate it from the
day before other than the weekly subcuvia (the t cell transfusion he has on
Thursdays) and whether Oscar has done a poo... (Seriously. He goes every other
day so it's quite a good event to keep track of. A poo clock. Every home should
have one.) I prefer the morning shift: there's so much to do. Once you're in,
Sam has to be fed and dressed, his bed changed, washed clothes put away, play
mat put out... It can easily take well over an hour and before you know it it's
10:45am and Modern Family (the JOY of Sky!!) or House is on and away the day
goes.
As does Sam... he's practising rolling from back to front,
he's teething so the drool is near-constant and he's WEANING!!! And some...
every day at 12pm he gulps down a 70g Ella's sachet of fruit or veg puree. So
far he loves mango, apple, pear, parsnip and banana; peas, carrot and sweet
potato much less so. But we have time, so so much time, for him to learn to
love his veg.
And every day the doctors come in and listen to his chest
and ask if there's a rash, is he being sick, has his cough come back and every
day we say "No" and feel slightly fraudulent as Sam rolls and chats
and kicks, but there is no denying the paperwork, those lines and numbers on
paper that says Sam is not the child he's pretending to be. We try not to hear
the screams from one of the older children in a room nearby, do not ever
mention it to each other that someone else's child isn't having an easy time of
it, is in seemingly unremitting pain; we seal ourselves off from it in our
hermetic bubble because someone else's pain is just unbearable right now. And so we trickle on, hoping every day that our particular roll of luck in this unlucky game of DNA dice continues, that we can be out of there in 8 weeks and home, creating another bubble, it's true, but at least one of our own making.
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