Tonight, as I sit here in front of the fire, my children warmly tucked up in bed, it is easy to forget that, for a while, this time of year, these few weeks when we are at our darkest, dampest and coldest, this particularly quiet empty time between Christmas and New Year were not always so cosy. Winter has long been a problematic time for me; many years have seen me cough my way through plays and concerts, descant parts that still ring in my mind remained unsung as my throat stopped working in protest and internal temperatures rose, but nothing, nothing that had gone before prepared me for the onslaught that was winter-with-baby/toddler/child-with-Down’s.
The summer when Sam was about five months old we headed into the hospital for a sleep study. He made this funny little duck noise (it’s the sound of a floppy larynx) and struggled for breath when he slept; an overnight stay hooked up to numbers and beeping diagnosed sleep apnoea, but not bad enough to do much about, and certainly not enough to warn me of what lay ahead.
I’d never been in an ambulance before. I’d never had anything to do with nebulisers, but when he wouldn’t stop coughing, when he couldn’t catch his breath, when my little baby didn’t cry, kept on trying to play but couldn’t, when his skin took on a strange papery texture, I took matters into my own hands and we rocked up at the small injuries unit (we know the staff there quite well).
Later that night, as I sat, itchy eyed, swimming slowly to realisation that he wasn’t just a little bit ill, I watched a young doctor watch my son, dry nappied and dressed only in a mucus-and-calpol stained vest; I watched her check his oxygen sats again and again, and I heard her say, ‘come on Sam’. I wondered emptily if it was at this point that I needed to worry; seriously worry.
It’s a strange state, the one where your tiny child is in hospital. They haven’t been in your care very long, and, when they were born with an extra little complication, the ward is never very far away. It’s almost as if that small person doesn’t quite belong to you. To be shuttling backwards and forwards, in and out for appointments and consultants and overnight stay feels almost normal. Strange, but normal.
Hospital is where I realised that Sam was signing. It was just before New Year, and we were playing with him, chatting over the possibility of going home, as there wouldn’t be many people around for the 31st/1st, when we noticed that whenever my name (mummy) was mentioned, he made the same action (putting a telephone to his ear, make of that what you will). Hospital is where R realised that there is a certain selflessness about motherhood, when he came upon us both, he sleeping upright in a plastic chair thing, head tilted back, under a perspex oxygen box, me, fully dressed, medium pregnant and crashed out on a sort of pull up bed, casually draped with hospital blankets.
I remember those years, those pneumonia Christmases, with an echo, a vague sense of unease that the doctor’s surgery will be closed, that the chemist’s doors will be locked for the length of the holiday. I know that, even though, for us, the trials of the season of good will are lessened by growth and strength and sleep, that there are many, parents who are starting out on their journey into special parenthood, who are where we were, in the quiet week, sitting on the edge of chairs next to hospital cots and beds, wondering how low the sats are supposed to go.
I’m not one of those who sees no need for stopping at this time of year. It’s not only the fact that the children become impossible, wound up into a frenzy of excitement and expectation by the glitter and tinsel, the making of cards and practicing of carols and plays, such that they are good for nothing except a bit of colouring and story time. It’s not just that we adults are tired, exhausted by the efforts of keeping on keeping on, the agony of dragging ourselves out of our warm beds into the dark and cold (and that’s the kitchen), the forcing of breakfast between reluctant lips.
We are fools when we think that we are somehow beyond the dictates of the natural world. A large part of me rants and raves at the nonsense that demands that we eschew the Christmas crafts in our classrooms, in favour of carrying on with the serious stuff of learning whatever it is we are supposed to be teaching them now, but the bigger part, the part that has endured the snot, the coughs, the temperatures, the vomit, the fear that all might not, in fact, turn out well, that part of me sits back wearily and sighs.
One of the funny things about Down’s syndrome is that it acts like a magnifying glass. When Sam is unhappy or worried or doesn’t get it, you can guarantee that other children feel the same way. His confusion may be greater, but confused they still will be. While Sam, and children like him, might grace the wards at the end of December/beginning of January, the others, the ordinary, the typical children, and their parents and teachers, they need rest and recuperation too.
Give us all a break.