House move

I’ve mentioned this before in passing but not really said much as I don’t want to jinx it going through. But as it has sort of been taking over my life I guess it’s time to rectify that.

When I’ve mentioned the perils of moving to friends, a few people responded with the fact that moving house is meant to be one of the most stressful life events. I usually replied jokingly that diagnosis of a life-limiting illness tops that. But the reality is that the arrival of MPS into our lives has directly affected how stressful I’ve found these last few months.

Life is generally full of peaks and troughs of stress and emotion, but since Pudding’s diagnosis my underlying stress has been reset to a much higher level. While I can cope with the usual everyday stuff, anything extra on top of that has become so much harder to deal with.

The difficulty of keeping the house tidy for viewings (anyone with children will understand that special pain), the disappointment of the first two offers falling through, the endless forms and legal stuff have all taken their toll. And joy of joy, stress has blossomed into the new symptom of anxiety.

Mental health has become much less taboo to talk about but it still feels hard to admit how I’m finding it. Logically I can reason with myself that the sky won’t fall in if I can’t find a particular document, but yet every time I have a communication from the solicitor my body reacts. I now only have to see notification of a new email for my heart rate to go up and it becomes more difficult to breathe. Of course, 9 times out of 10 it’s something else entirely – a harvest festival letter from school or the latest sale on at my favourite shop. But each time, that anxiety builds and some days it is immobilising.

We are hopefully now getting to the end of the process and will be able to exchange contracts soon. And I am trying to focus on the positives. The house we going to has more room inside and out for Pudding to play in (and for T to escape from him when he’s hitting). We’ll have the potential for a downstairs bedroom if we need it. The cul-de-sac location means less chance of him being in danger if he escapes. And a detached house means that I need worry less about noise.

OLYMPUS DIGITAL CAMERABut still those fears nibble away at me. ‘It can all fall through at the last minute’. ‘You’ll have to start all over again’. At least one bonus about our current health concerns is that Pudding seems to have stopped getting much taller at the moment, so is less likely to grow out of his current bed and small room… Maybe another year in this house is possible. And I won’t yet have the wrench of leaving the house where both my boys were born. (Technically as we’re taking the rug with us I could still point and say “that’s where it happened”!) Though I’ve already had the tears when I painted over their height marks on the wall.

Cross fingers I’ll be able to share more positive news in the next few weeks and hopefully my emotions can get back to a more even keel. In the meantime, thank god for cuddles and fun with my little Chucklemonster every evening. There is a lot to be said for living in the moment!OLYMPUS DIGITAL CAMERA

Sorry, this post has been a bit of an emotion dump, but do you know what? I’ll probably feel better for having written it, so no apologies to anyone who has had to read it!

 

Wheelchair

Gosh it’s been a while since a blogpost, hasn’t it? Loads of potential updates going round in my head, but what with house-moving stresses and other stuff, none of them are making it into print! So I’m making an effort today.

A few months back I had the decision of whether to replace Pudding’s special needs buggy with something similar or to go with a wheelchair this time. As well as the buggy becoming harder and harder to push given how worn-down the wheels were, the appointment was triggered by my worries about his safety. When he got cross (who’d think it of that gorgeous smiling face?!) he would push down on the footplate, arching his back and being in real danger of tipping the whole thing over backwards.

OLYMPUS DIGITAL CAMERAWe did talk about various options to stop this happening, but also there was the knowledge that he wasn’t getting any smaller and would eventually outgrow the buggy anyway. The physiotherapist got a wheelchair out for him to try and his little face when he climbed into it… Well, I knew that it was the right thing!

We’ve had the chair for just over a month now, and I’m happy to report that I still think it was the right decision. It has changed our lives in a number of ways – some expected, and some not so much.

I had got into the habit of driving more often than I’d like as it was such an effort going any distance with the buggy. The wheelchair though is a dream in comparison. I can even push and steer one-handed! I do have to be better at remembering to put the brakes on – without them it does want to head off independently down even the slightest of slopes. (And no, we have not crashed yet…)

 

parkingThe accessibility (or not) of the built environment has become much more obvious to me. The little wheels at the front of the chair make it a bit harder to negotiate small obstacles than with the buggy. (Drivers please note: dropped kerbs are there to make it possible for wheelchair users to get around – if you park over them it might save you 30 seconds but take someone else far longer to find a different route). And I never knew that some surfaces are near impossible to get across. My unfavourite so far is this sort of surface used around the accessible parking bays in a place near us.

One thing I hadn’t realised is how much heavier it would be, so I’m eternally grateful for the friend who helped us find our new car earlier this year. He chose one with no lip on the boot which makes it possible for me to lift it in myself without too much damage to my back. One of those solutions that lifts the wheelchair onto the roof of your car would be absolutely fabulous, but at around two thousand pounds not really affordable.

It does feel easier to use our Blue Badge card. Previously I always worried that our right to park in the disabled bay would be challenged as there have been instances where those with invisible disabilities have been on the receiving end of horrible comments. With a wheelchair we ‘fit’ people’s expectations of disability more.

Attitudes towards us when we’re out and about are also quite different now. The first time I caught a bus with Pudding in his new chair was a marked change. The bus driver stopped at a slightly better place, got the ramp out and asked if we had a disabled travel pass. Not all travel is that easy when disabilities are added into the mix and perhaps we just hit lucky with an excellent driver, but we certainly never had as attentive service when he was in the buggy.

I had expected to receive a bit more understanding from adults  – seeing a wheelchair automatically signals more of a difference than a buggy – it prepares people to accept that the wheelchair user/carer may need more help and support. And if Pudding is being particularly loud I hope that he won’t be dismissed as ‘out of control’ as much. But I guess one thing I wasn’t prepared for was how many more stares we get from other children. They see buggies all the time of course, but a wheelchair is outside their daily experience.

I may just have to grow a thicker hide again, but of course Pudding couldn’t care less. In the chair he seems very happy – he is more upright and therefore more actively involved in his environment. It’s the perfect height for most cafe tables meaning that he can join us more easily. And he can climb in and out all by himself so gets the added pride of being more independent.

We’re wheely happy!

Can I love MPS?

The other day I watched my eldest, T, shooting zombies on a computer game and telling me enthusiastically about the gun he’d just got (ON THE GAME!) and how machine guns were the BEST. I sighed and wondered why with all the amazing toys and books we have around, it is simulated violence that wins out.

And then I had a bit of an epiphany.

His brother, Pudding, may laugh at cartoon violence but he will never get involved in blood-thirsty shoot-outs.

I read a lot of blogs about other disabilities and one of the discussions that I find both fascinating and thought-provoking is differing views of autism. Parents of children with autism often struggle to adjust to this different world and use strongly emotive language about it. Whereas adults with autism will point out that autism is a part of them and to say you hate autism is to say you hate them.

That discussion has often made me think about how I refer to MPS – I’ve frequently said I hate it and wonder what adults with the same condition would say about this. The trouble is, I guess, that when I write I often use MPS as short hand for ‘Mucopolysaccharidosis Type II (Hunter Syndrome) – the severe version’. It’s just simpler to write. And whilst there are adults with other types of MPS or the attenuated (milder) end of Hunter Syndrome, there are NO adults still living with severe Hunter Syndrome for me to ask.

If my son was diagnosed with cancer or caught a life-threatening illness, that would be less complicated – I could rail against that to my heart’s content. But MPS? Without MPS he would be a completely different boy. How can I hate something that is a part of him? And yet, how can I not hate something that will take him from me before he becomes an adult?

And yet, and yet, and yet. There are bonuses to having my boy with MPS. The lack of interest in violent computer games is just one of many.

He may never tell me he loves me but he will also never scream ‘I hate you!’ in the heat of an argument.

Pudding aged 3He may not ever find ‘the one’ special person in his life. But to him, everyone is special.

He will never get drunk and fall in through the door at 2am.

He may not join in nursery rhymes but he will also never disturb the whole street by playing thumpingly loud music.

He will never judge anyone based on their race, religion, gender or any other construct of society.

He will always need help with things but will never look at me with contempt because I can’t manage the settings on my phone.

He will never demand the latest toy craze because ‘everyone else has one’.

His uncomplicated joy in life is contagious.

And he may attract stares sometimes but he will also continue to bring many wonderful people into our lives.

There will always be the health aspects of MPS that I rail against and if I had a magic wand I would cure him in an instant. But there are things that I can celebrate about MPS as well. My emotions and thoughts around this topic will probably yo-yo though the months and years depending on what is happening around us. (I think another blog post is forming in my head about separating out the different aspects of health/disabilities and what it is that actually bothers me.)

But the one thing that will never change is that Pudding is my gorgeous boy and I love him with all my heart.

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.

Other people’s children

I have a confession to make. I judge other people’s children. All the time.

You know when you’re in the supermarket and you see some parent pushing a trolley past, piled high with rubbish, followed by their kids who are kicking off loudly about something or grabbing more stuff off the shelves? Or you don’t even see them – you can hear a child having a tantrum three aisles away? And you shudder and think ‘What terrible parents. I’ll never be like that’.

I used to be one of those superior people, judging other people’s parenting skills, or lack of them. But since Pudding was diagnosed with MPS I’ve read so much more about autism, PDA and other conditions and try to be more understanding. I know now that the child in question may be having a meltdown because of the challenges of being in an unfamiliar environment like a busy supermarket. That parent may want to get some vegetables into their daughter, but may have no option but to cater to a restricted diet (some children WILL starve rather than eat unfamiliar foods). That boy may have severe learning difficulties and be unable to keep their voice down or be compliant.  Yes, of course there can be some terrible parents out there but how can we ever know what is going on with someone we encounter without actually walking in their shoes?

IMG_9299No, what I’m talking about now is the way other children react to Pudding. I judge them by the way that they judge him.

I’ve been thinking about this for a while now – ever since witnessing a particular game of football that Pudding gate-crashed in our local playground. The reactions that he got, even from children who knew him already at school, varied really widely. Some fantastically accepting and others…not so much. The same holds true of other children we meet when out and about.

They seem to fall into distinct categories.

The Embracers – these are the children who don’t just accept Pudding and all his marvellous ways: they encourage him to join in their games and welcome him with open arms. They quickly realise that he can’t perhaps do as much as them physically or mentally, so they set the goal-posts lower (as it were) and celebrate what they have just helped him to achieve. Goal!

The Questioners – these children notice his difference and want to know more. Why won’t he talk to me? Why is he being so loud? Why is he in a buggy? The other day in a cafe a little girl asked question after question and her mother told her off for bothering us too much but I really don’t mind all the questions. Children can only learn about the world around them if we give them the information they need. And very often the Questioners end up becoming an Embracer. When we left that cafe, the girl waved goodbye to him and was rewarded with one of his brilliant smiles.

The Borderliners – although I can read Pudding like a book and know that most of the time he is approaching someone to make friends with them, some children don’t see it like that. Some, often smaller ones, find him a bit scary. He’s big. He doesn’t act the way they are used to. I understand. I usually explain that he can’t talk and he just wants to play. Some will run away crying. Some will tolerate him but not really engage. And that’s ok. It is hard to take in something new, but at least they are not being actively horrid. Unlike…

The Sneerers – can you guess, my least favourite category! These children have ‘that look’ on their face as soon as Pudding appears. Annoyingly, he seems drawn to them. On a recent trip to Yorkshire Wildlife Park, we spent some time in one of their fabulous playgrounds and Pudding approached three boys who obviously didn’t want him there.  I tried to direct him away from them but he went back again and again. On the third time as he opened his arms and smiled at them with his usual ‘Ehyyyy!’ one of them wrinkled his nose and said, ‘What on earth are you doing?’  I could feel my shoulders tensing up but I still tried. I told them that he was just a little different and asked if they had not met anyone different to them before. I knew I wasn’t going to win them round though. The answer I got was a sneering ‘No’. The next time he approached, Pudding kicked one of them. Although I told him off, inside I was secretly cheering.

I’ll be honest with you: the Sneerers stay with me. After those sort of encounters I’ll play it back in my mind, invent responses I should have said to them. Wish I had told them that if their brain was being destroyed by a genetic condition they might act a bit differently too. Wonder if I could have handled it better. And it makes me sad to think that they might grow into the sort of adults who go on social media to throw vile comments at anyone who is ‘other’.

It can be a challenge going out into the world and never knowing what we will face that day. But this is how disability becomes invisible – if the pressure of everything being too difficult (whether that is lack of facilities or the attitudes of chance encounters) makes us stay at home instead then we become part of the problem. I’ve come to realise that we will always encounter the Sneerers, but if I let them get to me then the negative has won. What I should be doing is celebrating the Embracers and welcoming the Questioners. They are the good ones, the ones who can change the world for the better. They are the people that I would want to stand up for Pudding and others like him. Even the Borderliners might be brought to see the benefits of accepting difference eventually.

What sort of child do you have? And what can you do to ensure that they become an Embracer if they aren’t already?

 

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Facade of fortitude

In my last post I was really pleased to be able to share a documentary that featured Pudding and me. And even happier that it’s been shared and viewed by so many people. I’ve always said that the more times his lovely face is seen, the more chance there is that someone somewhere will recognise MPS the next time they see it.

What I have more issues with though is the comments that follow. Nobody has said anything horrid – quite the opposite in fact. I’ve written about this before. Strong. Brave. Amazing. Inspiring. All lovely things to say – but it doesn’t really feel like they describe me. In fact it makes me feel like a bit of a fraud. I can think of a few words that describe me better – grumpy, lazy, unreasonable, demanding, to name but a few!

Joking aside, just like anyone I’m a mixture of positive and negative aspects. Just an ordinary person trying to cope with this frankly sometimes shitty hand of cards that I’ve been dealt. You would all do the same. You really would.

Whilst I feel like I’m nothing special there are others in the MPS community who I think are. They are dealing with the same horrible diagnosis but with an extra helping of difficulty: money troubles; single parenthood or a troubled relationship; no family support; two or more children with the same condition. They are the amazing ones.

Maybe I have the words to express our story better than others but again I’m not special there either. I haven’t really written about the blogging event I went to last week (apart from just a smidgeon of gushing about the lovely Gethin Jones). But it was a brilliant evening celebrating the writing of many better people than me. It also served as a reminder that while Pudding’s condition is life-limiting, it is not at present life threatening. Two very lovely ladies stood out for me – Little Mama Murphy (writing about her profoundly disabled son), and Living with Lennon (Lennon sadly died in August last year). Both their awards were very well-deserved. They too are the amazing ones.

I’m ok with not being amazing. There will always be the times where I feel like a fraud or know I’m acting strong despite all the fear and anxiety churning along underneath ready to drown me. But for me, it’s enough to be enough. As long as I have the love and support around me that helps me to keep going. As long as I can make my gorgeous Pudding break out into irrepressible giggles. As long as I can feed my family and juggle those appointments. And as long as I remember to allow myself the occasional wobble without losing myself completely, then that’s fine with me.

Pudding in front of some greenery. He looks a little pensive or worried.Perhaps I should change the tag-line of my blog – Facing the future with a facade of fortitude…?!

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!!