Twiglet no more

To my oldest little boy,

You’re growing up.

From your too-short trousers to the five slab-like new teeth in your mouth, from your enthusiastic love of The Kinks to your adult way with words sometimes, I can’t help but notice it. Often lately I look at you and see the teenager you will become. It will be a while yet, but you’re more than half way now.

It is bittersweet sometimes thinking of your future, wondering how far along that path your brother will follow you – mentally or physically. But whatever you do, I’m pretty sure you’ll be a heart-breaker. I can’t quite believe I gave birth to such a handsome boy (yes, I know I’m not allowed to say that, but it’s true).

Your emotions can still be a little…um…shall we say, volatile at times (can’t blame you for that one really; mine are too!) but you are getting so much better at weathering the storm. You stomp upstairs as if the world is ending but a minute later you’re back down like nothing happened.

While we had to move Pudding to his own room to keep him safe, I’m also glad we did it for your sake. I love that you now have your own space to retreat to in times of need. You can shut the door to keep your brother from destroying your precious things and spend hours in there listening to music and acting out elaborate scenes with Lego.

I’m sorry I get frustrated sometimes and snap at you. I do try to stay patient, and I hope that soon you’ll understand that the things I say over and over again (like ‘Don’t bother your brother right now, or he’ll hit you’) are usually for your own benefit.

For now, I guess the most important thing is that however upset you get with me, you always seem to have more empathy with Pudding. Even though you hate getting hit by him, you show your love for him every day in so many ways. You look out for him at school and tell your friends about him proudly. You encourage him to join in games with you and build him towers to knock over. You spring to his defence if I ever joke that I’ll put him in the dustbin. Even a grumpy old Mummy like me can’t stay angry with you for long when I see you run to him for cuddles.

It is not always easy having a sibling who is a bit different and yes, it does mean that sometimes you miss out on things we would be able to do otherwise. But along the way you’ll learn a lot too. You already have – after all, there aren’t many six year olds who can read the word ‘mucopolysaccharidosis’.

Boy running away from camera on a sunny spring day

When I first started this blog, I wanted to keep a bit of privacy for our family and not use our real names. I decided to refer to you as Twiglet and Pudding – both names that I used when I was pregnant. Pudding is still just one of the many nicknames that I use for my littlest boy, and one which I am pretty sure he won’t grow out of in a hurry. Twiglet though…? Well, now you’re nearly seven it just doesn’t seem to fit our closer-to-growing-up boy. So, it will be T from now on.

Bye bye, Twiglet. It’s been nice knowing you. As you run into your future, I look forward to getting better acquainted with your alter-ego. I think he’s going to be amazing!

Yours for ever and ever,

Mummy

PS. Getting to your chest of drawers is a bit of a Lego minefield. Do you think the minifigures could retreat to a more strategic location every so often?

 

Mummy Times Two

Happy New Year

Christmas is over for another year.

With a change to normal routine, festive food and many opportunities for sensory overload, I know many families with disabled or additional needs children can find the period a struggle. But for me, unlike other holidays, Christmas means lots of other adults around to help take on ‘Pudding duty’.

Just before Christmas we had a lovely holiday with my extended family in Center Parcs. We didn’t book any particular activities for Pudding – the only one he would have liked would have been football. The sessions for his age-group were a bit beyond him, and if we’d booked him on the younger session his hard accurate kicks could knock the tiny two year olds down like skittles.

He had not been in a swimming pool for 18 months and it wasn’t a huge success then, so I was a bit unsure what he’d be like this time. He loved it! Straight into the water and happily throwing his ball to anyone nearby. And the other thing he loved was our family photo session where we played to the camera beautifully.

img_6993Christmas itself was much quieter. Was he excited about presents? Well, not so much. Breakfast was far more important in his book. But he definitely enjoyed playing with new toys once they were open. And he gave the rest of us a great Christmas present too – an afternoon nap, which is happening less and less these days. This meant we all had time to play Twiglet’s new board game, impossible when a little whirlwind is around to grab pieces and knock the board over.

So now is traditionally time to look onwards to the next year and wonder what it will bring. Politics aside, I find I can welcome 2017 in with a bright heart.

Yes, it will bring down days and medical stuff, including another general anesthetic in less than two weeks. But it will also bring more progress (we hope) in Pudding’s skills, more new friends, more laughter, more love and light.

Here’s wishing you all oodles of the good stuff in 2017 and the strength to deal with any of the bad stuff that comes your way.

Festive fun

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.

img_6850The 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?