Football

I suppose it’s inevitable that with World Cup fever sweeping the country (a little more muted now England is out) my thoughts should turn to football.

When I gave birth to my second boy, I dreaded the fact that my life would probably become dominated by the sport. Giving in to demands for the latest prohibitive kit, standing in the rain by a soggy pitch cheering them on, fighting to watch my own programmes on TV if football is on. With one boy I might have got away with it, but surely not with two?

Maybe I should be careful what I wish for, but it seems I did get away with it.

T has never really got into football at all. He’ll join in a kick-around sometimes, but has always been much more keen on Lego or role-play games. He’s inherited my own cack-handedness when it comes to ball games!

His younger brother seemed completely different. Almost as soon as he was walking without falling over, Pudding loved football. His left kick was super-strong and shockingly accurate. This was going to be his strength I guessed. I knew he was behind on language and other things but on the football field he would shine. Once he got over his habit of picking up the ball and running away that is. (We did think for a while that he was more suited to rugby!)

But the months went by and we were punched in the guts by his diagnosis of MPS, and that prospect became less likely. His mainstream peers got faster and more agile. They learnt the rules and were sometimes less tolerant of Pudding’s tendency to interrupt the flow of the game.

He will never know the camaraderie of working together on the pitch or supporting his favourite team. Some Manchester City players visited hospital when we there and Pudding was happy to show off his football skills and say hello. But he had no concept that other boys his age would have been over the moon to meet some real live football players. He has completely ignored any games shown on the TV – apart from Footie Pups on CBeebies!

So it looks like I’ll never be a football mum.

I can’t really mourn something that I never wanted in the first place. But what I will continue to mourn is the condition that has taken this away from him.

Of course, he doesn’t know any different. He still loves kicking a ball around and grins widely if he scores a ‘goal’. His favourite treat in the world would be a big field, a ball and lots of people he loves there to play with him.

Pudding in the garden chasing a ball with a big grin on his face.His joy in football is infectious. And I’m happy to meet him there on his own terms.

Summer

I’ve got a confession to make. I’m surviving the summer holidays. Even enjoying it quite a lot of the time. But sssshhhh! Don’t tell anyone because I don’t want to jinx it.

Some people might think we’re strange as we haven’t booked a proper holiday anywhere – only a couple of long weekends, and one of them was at the hotel of Mum and Dad. The truth is, instead of time to relax weeks away can actually be more stressful than normal life. We have to make sure everything is Pudding-proofed and then there is also the issue of getting him to sleep in a different place. This often leaves us stressed, shattered and decidedly grumpy.

My approach this year is just to make sure that we have something to do each day – even if it is just to take our football to the local playground. And with the holiday shorter than usual (we only have 5 full weeks and 2 part weeks) it seems to be flying by.

Pudding still has ERT  every Friday and is in respite for a day each week. I have Niece and Nephew here quite a lot too. More children in the house usually makes it easier as they entertain each other. (But the bickering! OMG is this what most parents of siblings have to put up with? It’s unbearable!)

Pudding in front of some greenery. He looks a little pensive or worried.

But what really makes the difference is attitude. My attitude, that is. With my improvement in mood lately, it’s so much easier to deal with Pudding-ness. I think I truly realised this the other day when he ran away with some of the washing I was trying to hang out, trailing it behind him all the way up the path. Instead of getting annoyed or upset, I laughed. And put it back in the machine once I’d chased the cheeky sausage round the garden.

I’m not saying there aren’t some more difficult days. The ‘I need to make some chocolate brownies now’ sort of days. In fact, today is one of those days because I didn’t sleep well last night and Pudding seems determined on throwing the entire contents of my bedroom down the stairs. So…I’ve given myself a break, put the TV on and am enjoying hearing his chuckles at the Twirlywoos while the others crash around my very small house playing hide and seek.

And now if you’ll excuse me, I have some very important baking to attend to in the kitchen. Anyone want to lick the bowl out?

Kindness

So you may have gathered that the last few weeks haven’t been the easiest – sickness bugs, half term, surgery, virtual house arrest after surgery (and don’t even mention politics!). But I’ve been carried through by the kindness of … well, almost everyone.

Of course, there will always be the exceptions, the ones who judge or who don’t make the effort to consider that not all children come from the same mould. We had one of those in half term when we visited a cathedral. I approached the information desk to ask for the disabled exit (because yes, Pudding was not happy, and yes, he was making sure everyone knew about it). The lady turned round from a conversation with a smile that didn’t reach her eyes and told him to ‘Shush. Please!’ before waving us to a lift which wasn’t what we wanted.

But I won’t waste my ire on people like her. This post is about the good ones, the people who show their kindness through everyday actions. Like the other staff there who went out of their way to try and engage Pudding in activities despite his difficult behaviour. Maybe a job to them but welcome inclusion to me.

The very next day the boys and I were in the playground at a stately home. After spending ten minutes trying to escape, of course Pudding didn’t want to leave when the transport came. When he decides against something it is becoming more and more difficult for me to manage him physically. He is now half my weight and very strong. I was rescued by a complete stranger who offered to take the buggy while I persuaded /coerced Pudding to move. Such a little thing for someone to do, but such a help to me.

Pudding in a check shirt frowning slightly at the camera.We met another friend there and while we followed a trail around the gardens, she said to me, ‘I’ll push the buggy for a bit’. Such a little thing for someone to do, but a welcome rest for me. (He’s heavy!)

One of the added problems about Pudding’s appointments in Manchester is having to work out what happens with T while we’re away. The day of surgery, a friend offered to pick him up from school, take him to the earlier gym class her son goes to, and then wait around until T’s class had finished. Yet another friend picked him up from school the next day and held onto him for an extra hour when we were delayed getting back. A short(ish) time for them, but a release from worry for me.

MPS has brought us so many trials and tribulations, and a world that I wish I had never heard about. But it has also brought the ability to see a side of people that I might not really have been aware of otherwise. My everyday heroes. Not just family or long-term friends who are bound to us with ties of blood and years of shared experience, but people who’ve got to know us since Pudding’s diagnosis and who haven’t run a mile at the sight of an unconventional set-up. Not forgetting the kindness of strangers.

Kindness matters. It really does make a difference. Next time you see someone struggling and wonder whether you should intervene, just offer that help. It might be a small inconvenience to you, but could mean the world to them.

Learning

Not Pudding. Me. It may be a bit of a cliche but Pudding definitely teaches me things.

He is so friendly with everyone he meets, welcoming them with an open heart and no judgement, despite often being on the receiving end of judgemental looks himself. To him, everyone is a potential playmate regardless of age, race, class or any of the other constructs that we use to measure each other against.

Today I took the boys to the playground after ERT – time to get some fresh air after all the medical stuff. When we arrived there were some older girls hanging around so I avoided them and started playing tag with T whilst also trying to make sure Pudding didn’t escape. But within 5 minutes Pudding had zoned in on the others and moved in closer.

I could hear laughter coming from the girls and my Mummy-radar was on high alert. Were they laughing at him or with him? It’s so hard to tell sometimes but I’m getting better at giving strangers the benefit of the doubt. Rather than marching in with suspicious looks, I used some Makaton to him (signalling to them that he is different) and translated what he was saying (‘Found you!’). I then backed off though I desperately wanted to stay and protect him from their potential scorn.

Two minutes later he was having the time of his life with four girls chasing him round the playground whilst they shouted ‘Found you!’, and making him screech with laughter. I was free to sit down and take it easy, smiling at their acceptance of the simple level of play he was capable of.

When they left he cried. And when they came back again a few minutes later they loved his shout of joy.

Pudding’s approach might not always work, but it certainly has more chance of winning hearts than approaching others with suspicion. I’m not sure I’m capable of just walking up to strangers to point at them and shout ‘Found you!’ but his smile is one thing I can learn from and his belief in the kindness of others. Though I definitely can’t carry it off with quite such cuteness!

 

Hospitals (and play)

I have a little luxury that I indulge in when we’re in Manchester if it’s a long day or we’re there two days running. Our visit last week was a long long day. There was a problem in Pharmacy making up the drug so Pudding wasn’t given his dose until three hours later than usual.

(Because the drug is injected into the spinal cord it means that there would be severe consequences if any infection was introduced with it. The drug is made up in the aseptic lab – think protective clothing, disinfection, working in sterile environment – and if anything goes even slightly wrong they have to start again.)

If I’m stuck anywhere for any length of time I start to go stir crazy and hospitals seem to exacerbate that. There is always a lot of waiting around – waiting for the next set of observations, waiting for the dose, waiting to see if he reacts badly – and we’re powerless to really do anything much. So what I do is take a walk to the M&S Food Shop for a nice sandwich and maybe even a pudding. It is a definite improvement on the canteen food, but that’s not the luxury. No, it’s the short walk there, and more importantly leaving the building. I go the long way round and cut across the grass. Even though there are no signs saying you shouldn’t I still feel guilty but it’s worth it. The chance to walk outside and gaze at lush green nature, even if it is only a tiny patch, is priceless and is my healing.

Not that Manchester Children’s Hospital is a bad place. I’ve not got much to compare it to having never stayed in one myself, but if you have to spend a lot of time in any hospital I recommend it. It’s pretty bloody brilliant. It was purpose-built in 2009 and obviously has the needs of children very much at its heart. There are toys and cartoon characters everywhere, clown doctors doing their rounds, visitingSmiling lady with a birthday hat on playing with a transformer celebrities and amazing staff…

The most important people though, at least as far as the kids are concerned, are the play specialists. Nope, I hadn’t heard of them either until recently. These wonderful people have a background in childcare but now work in the hospital to offer all sorts of opportunities for play – distracting children from the procedures they are facing and supporting families. And oh my word, they are worth their weight in gold!

The first thing most kids ask when they get onto the research ward is ‘Where’s Emma?’. Non-verbal children like my Pudding rush to give her a hug. She makes each and every one of them feel special and loved. Of course, the nurses do a brilliant job too, but they have to focus on the clinical side and have loads of admin to do as well, so Emma gets to be the fun one. She provides DVDs, spare batteries and wifi, arranges the chill-out room for the teenagers and messy activities for the young ones. She has an enormous smile that never disappears. (And she’s even been known to clean up vomit when the need arises.) Pudding has one T-shirt that says ‘Mad as a box of frogs’ and we have always joked that she should have one too. Madcap indeed, but exactly what we need to keep us all sane in stressful circumstances.