As I said last year, I’ve always loved Christmas. I know it’s not for everyone. And there are some people out there who prefer the wild partying and heady celebrations of New Year. But for me, Christmas is family and warmth and lights on the tree and food and… Oh, loads of other things that make this time of year special.
This year seems just a little bit more exciting to me and the reason is, of course, partly due to my Pudding.
In the run-up to the festive season I’ve had a number of people ask the usual question. ‘Is he looking forward to Christmas?’ The answer is still that he hasn’t any idea what is happening tomorrow, let alone a week or month ahead.
He can’t write his own Christmas cards, or sing any carols, or tell us what he wants from Santa. He won’t ask ‘Is it nearly Christmas yet?’ or get excited about putting his stocking out on Christmas Eve. But this year there are a few little differences.
Since he was a toddler we’ve always put the Christmas tree up in our bedroom, out of reach on a chest of drawers. Sparkly things can be enticing for impulsive fingers. But this year he does seem a bit more sensible so it’s downstairs. On the first day he did hit one of the baubles repeatedly but has pretty much left it alone since. There is still the possibility that his giant Olaf toy could be used as a baseball bat on it, but hey, sometimes it’s good to live dangerously.
The big man in red is still a bit of a mystery to him but given his sociability, Pudding is always happy to meet anyone. Last weekend we took a train trip to see Santa. Pudding was the first child to to receive his present and was really chuffed with it. He held it, showed it to everyone on the train, put it in the bag, took it out again, showed it to everyone again… He didn’t seem to have much interest in opening it, but I think we can safely say that this year he’ll like receiving presents!
He may not be terribly keen on our lovely vegetarian Christmas dinner (he would definitely prefer the meat option), but I look forward to his enthusiastic signing of ‘cake’ repeated over and over again. And I know he’ll be happy with the relaxation of rules about no chocolate at breakfast time.
Of course the biggest change has been on the medical front. Last year, Pudding had just had a bad reaction to his second home infusion and we were facing the prospect of going back into hospital for the next one. We were also waiting to hear whether he would get onto the clinical trial to stop progression of the condition in his brain. One year on, and he’s had no reactions to ERT since. He also seems to be doing well on the trial as far as we can tell, and we do have hope for the future.
I’m writing this early in the morning as I wait for everyone to wake up for a fun-packed day with our extended family. Pudding will run around with a ball and cause chaos, revelling in all the attention of grandparents, aunts, uncles and cousins. Despite some emotional posts lately, life is good.
I’m unlikely to receive the best Christmas present ever – a cure for Hunter Syndrome – but in the meantime, a cheeky grin and vigorous cuddles will do me. Christmas Pudding, anyone?