OK, so call me Mrs Scrooge, but here’s my confession: I’m not really looking forward to Christmas this year.
Before you pelt me with metaphorical baubles, let me explain. I’m not such a Grinch that I can’t get excited about it a little bit. Alright, a Tesco ad is never going to make me cry and Yuletide shop windows in October leave me cold. But I do love it for the kids’ sake. Sissyboo’s excitement is a wee bit infectious and some of it has rubbed off on me. And now that her birthday has been and gone I feel like I can and have to get organised.
But I also don’t want to. You see a big part of me, the part of me that crosses my fingers before certain medical appointments or opening certain letters addressed ‘To the Parents of Mr Boo’, the irrational me, doesn’t want the advent calendar door on the 24th to open.
I’ve had some less that perfect Christmases in the past 30 odd years but last year’s was a humdinger. Last year was also the first that I’ve ever let myself get really excited about. It had been a tough old year, to put it mildly, but after 8 1/2 months we were all together and doing well. Boo was progressing, albeit slowly, and he was home and with us. Sissyboo had settled in at school and was doing so well with all the challenges our new life had brought her. We were spending Christmas with my folks. It would be no work. No hassle. All hands on deck and more food and drink than was decent.
And then Boo started to have seizures.
I won’t recount the details of us discovering that he had infantile spasms – a catastrophic form of epilepsy caused by the brain damage that is the root of his at the time not diagnosed cerebral palsy. The whole sorry saga is well documented here.
He had several episodes as we called them at the time on Christmas Day (not obviously seizures, but I suspected that they were nonetheless) and all I remember about Christmas Day was a crippling anxiety, a dry mouth, worry that I would ruin everyone’s Christmas if I took him to A and E and terrified to death for the consequences if I didn’t. I took him in on Boxing Day and what followed involved three hospitals, three hospital stays and some of the worst months of our lives.
Boo has been seizure free for 10 months now. He was diagnosed quickly and responded well to treatment. We were and are lucky. Very, very lucky. But the spasms could come back or morph into another form of epilepsy at any point. Fear that this will happen – that he will start seizing again and lose the skills we have worked so hard to develop – resurface often in my mind, but I try to focus on the good, how long it’s been since his last seizure, how well he’s doing. Usually I don’t let it get me down.
But in the long hangover from last Christmas I am struggling to think about this one. I know it’s daft. There is no more reason to think that Boo will start seizing again on December 25th this year than tomorrow or never. It’s just a date.
Anniversaries are hard in Premmieland, though, as I’ve documented on the blog before. Even though they give plenty of opportunity for celebration – of how far we’ve come – they simultaneously clobber you round the back of the head and don’t just remind you but make you feel, smell, hear and taste things you don’t want to recollect.
I know it’s silly but I’m frightened. Frightened of allowing myself to get too excited for this Christmas (the happy, family one we should have had last time round) and setting us up for a fall. I’m frightened that something else will come to knock the wind out of our sails. I’m frightened I won’t be able to cope if it does. I’m frightened of memories making me sad on a day when I should be happy for my kids’ sake. And I owe it to them to be strong. They deserve a fabulous Christmas. Sissyboo most of all. I am determined she will have one.
So this year I am not dreaming of a white Christmas or perfect parties or anything resembling a Tesco ad. No: I’m approaching Christmas as I have learned to approach life since Boo.
Call it the therapist’s approach to Christmas, if you like. My plan is to keep plugging away at the day-to-day by doing what needs to be done to give us the best chance of things working out but safe in the knowledge that things will either go to plan or not. I only have a limited control over these things no matter how hard I try. I know that now. And yet whatever happens, experience tells me that it will probably be OK. And if the determined, crazy little Boos stay true to form, it could just be marvellous after all.