Over the Wall

On a Tuesday afternoon a few weeks ago, I stood in Leeds coach station anxiously watching the bus in front of me. I was waiting for one face. And there suddenly he was, in unfamiliar clothes, tall, dark and with striking eyebrows. I soon realised the last two were from badly-wiped-off face paint (much of which seemed to be all over his trousers), but after four days away my 9-year old did look somehow taller and more confident.

I had been told about Over The Wall Sibling camps ages ago, not long after Pudding was diagnosed but at that point T was too young (the camps are for 8-17 year olds). This year I thought he was ready but that didn’t stop me worrying about him going off without knowing a single other person there. I needn’t have been concerned – the first question he asked me as we walked out the coach station was ‘When’s the next one?’

I could write a whole blog post about this myself but what’s the point? I wasn’t there experiencing it, so I’ll turn this one over to T. (I interviewed him on your behalf!)

A tie-dyed T-shirt and some trousers covered in face-paint

So tell me a bit about camp. What’s it like? It’s fun cos you do lots of different activities. Some outdoor things like climbing and abseiling. We also did indoor activities like picking a partner and going round a course blindfolded.

Was it just physical activities? No, we made a film where I was the evil genius with a side-kick. And we made tie-dye T-shirts and origami. And after most meals we had a disco and did camp songs. My favourite was one where you’d sing the start of it and then challenge someone to ‘shake your booty’.

How was camp organised? We were in different teams and we all had a T-shirt. I was in orange team which was the youngest. And a few of us shared a bedroom. There were grown up volunteers who took us to the activities and cheered us on.

Did the staff and volunteers do things to help you make friends and boost your confidence? Yes, there were trust things like the blindfold course and holding ropes when someone else was climbing. And we did one thing where we had to write nice things on some clothes pegs and then sneak around and try and pin them on someone without them noticing. I was very good at that! Another thing was when we had to draw round our hand and then everyone in our team wrote what they thought about you.

Origami, a little wooden chest with a friendship bracelet in, a toy monkey, and a picture of a hand with lots of nice comments written on.What was the thing you enjoyed most? Climbing because you had to climb up a log onto a rope onto another log and then there was a ladder and a big net and some tyres to get up. It was really cool.

What was the hardest thing you did?  Abseiling! I hated it at the top cos you have to go backwards and it feels like you’re about to plummet to your death. But unlike some of the others I actually did it and it made me a feel a bit braver.

Were you all very sensible and well-behaved all the time? Er…no. Well, sort of. One morning we woke up at 4am but we stayed in bed till a better time.

What would you say to someone who was a bit nervous about going to camp? Don’t worry about going away. Just do it. It’s fun. I will guarantee you’ll like it!

Did you miss us at all? No! I didn’t even miss Pudding cos I was just too busy the whole time having fun!

 

I think you get the picture. He loved it, and even though I was going down with that horrible tummy bug when I picked him up, I couldn’t keep a smile off my face as he talked non-stop about all the things he’d done. And yes, he had a VERY long lie-in the next morning!

Over the Wall run camps for children with serious health challenges, their families and siblings. Applications are now open for 2020 (T is on the reserve list now, as they quite rightly prioritise people who haven’t been before). The camps themselves, and transport to them from various big cities, are free to all campers. Therefore any donations would be very welcome!

 

Interview with an MPS sibling

Most people will know that #MyMPSHero is a chubby little boy with a big smile and an impressive head of curls. But of course there are many heroes in my MPS world and today I’m handing over to one of them. MPS siblings put up with a lot and my biggest boy, T, is no exception to that. We’ve always tried to be open and honest with him about Pudding’s condition but sometimes I do wonder what he makes of it all. T agreed to be interviewed by me for this blog post and I’ll leave his words to speak for him:

Boy wearing #MPSday t-shirt with a blue paper bow-tie and moustacheHow would you explain Mucopolysaccharidosis to someone who has never heard of it?

It’s a disease that not many people get so it’s very rare. It makes lots of the parts of your body not work very well.

How does it affect your brother?

It’s stopped him from talking and he doesn’t really understand very much of what we’re saying. He never actually goes by rules of games because he doesn’t understand. I don’t like thinking about the bad bits because it’s too upsetting.

What’s the best thing about living with Pudding?

Cos of MPS that’s made him look really cute, so that’s nice. He also gives really good cuddles and kisses.

And what’s the worst thing?

That’s easy to say – he always hits us and throws books at us. Other things as well as books.

What is he good at?

He’s good at throwing things! And as I already said he’s good at doing cuddles and kisses. He’s also really good at football.

What do you think he’ll be like in the future?

I don’t really know. I’ve got an idea that some time there might be an antidote to MPS. But I don’t want it to stop him being cute though.

Do you have any advice to give other children who have a brother or sister like Pudding?

You’d better get good at dodging things. But try not to get angry when they do throw things because then that encourages them to do it again.

I know you didn’t like it when he moved away from the school you go to. Why was that?

I liked him being at school because he would roam around a lot, and sometimes he would come and invade our classroom and give me a cuddle. But I’ve got used to him not being there now.

Can you imagine what it would be like to have a brother more like you?

Yup.

Do you think you’d prefer that?

Not really, because I like Pudding. He’s cute.

So do you think he’s the best brother you could possibly have? (incredibly leading question from the interviewer!)

Yes!!

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

Drayton Manor

So so tired today, but it was in a VERY good cause. Namely enjoying ourselves all weekend at Drayton Manor theme park.

The weekend was organised by the MPS IMG_8518Society so we were surrounded by other member families.

It was of course great fun to try out the rides with the boys and eat too much rubbish for a few days, but when I asked Twiglet to guess what my favourite part was, he astutely said ‘spending lots of time with your friends’.

The deal that had been organised was superb value (two nights accommodation and two days pass to the theme park) but the chance to relax and chat with other parents was priceless. No need to let them know how treatment is going, or explain any medical terms.  Age, background, education – all irrelevant when faced with the fellow feeling that comes when talking to another MPS parent.

IMG_8491On the Friday night, there was entertainment laid on for the children – bubble machine, character meet-and-greets, party games, boxes full of Haribo. Needless to say, they were happy as larry, and as a parent it was great to watch knowing that any typical MPS II behaviour would be understood.

Twiglet made firm friends with the brother of another little boy on Pudding’s trial and they leapt all over the dance floor, racing cars and ‘being weird’ together. It’s doubtful that either of them were consciously aware of the bond that being an MPS sibling can bring, but maybe it played a part.

Hubby and I each had an evening down in the bar with the other dads and mums respectively, and in my case I can certainly say that gossip and laughter is a wonderful medicine. Though I may need to apologise to anyone whose room was overlooking our table – we may have been a tad loud. Particularly when we all waved enthusiastically at a man looking out of his window thinking it was one of the husbands.

The sun shone all weekend and neither the IMG_8528wasps nor the queues were as bad as Legoland. Pudding’s smiles when on some of the simple rides in Thomas Land were a joy to see, and there was another proud moment when he learnt to sign ‘train’. I also very much enjoyed taking Twiglet on some of the more adventurous ones when Pudding was back at the hotel having a nap. Lastly, over the weekend I found out that I have a part in another Shakespeare production.

So today life is good. Despite tiredness, despite bickering children and despite scraping the car’s paintwork on our gatepost. Life can be very good!