Today I cry

Today I cry.

This morning I should have got in a taxi to the station with Pudding, caught a train to Manchester and arrived at the hospital. We would have had a lovely greeting from his fan club of nurses and other staff. He would have had a dose of the potentially life-saving drug, just as he has done every four weeks for the last three and a half years. And we’d have whiled away the next four hours with playing and TV in between medical observations.

I am sure that we have made the right decision in withdrawing Pudding from the clinical trial. But that doesn’t stop it being hard. And so I cry.

I cry for the loss of hope. I cry for the loss of his future. 

Pudding with a massive smile, laughing at someone just off camera.

I cry that after three and a half years one of the boys on the trial finally learnt my name and now we won’t see him again.

I cry for the skills he has lost and those he has still to lose.

I cry for the other boys with Hunter Syndrome that never even had the chance of this hope. And I cry for families that have been on trials before that were ended with no choice or input from them.

I cry for the strength I will need to deal with things still to come.

Today I cry. But not for ever.

I don’t have the time. For one thing, it’s production week for our play right now and I’m too busy to spend long in the emotional depths. But also, I think of the reasons that we actually made this decision. One of the huge positives of this choice is to give us more time to enjoy away from the clinical hospital side of things and I am determined not to waste this.

Every time over the last few weeks that I have looked at my gorgeous Pudding, my heart melts even more. And every time I cuddle him, I hold on just a little bit longer. Every minute has become that much more precious.

Less than a week after we saw the consultant for that life-changing discussion I did a talk at Martin House Hospice during their Open Day. I used a talk that I’d written for them on a previous occasion and hadn’t got round to updating it much. Reading through it just before, I knew there was one paragraph that I would struggle to get out without being too emotional and that’s because it had taken on a particular poignancy since I had written it months before.

And most of all Martin House has taught me that a hospice isn’t just a place about dying. Coming here is definitely about having the space and energy to live life to the full and celebrate what we have. And whether we have days, weeks, months or years to spend with our life-limited children, it’s important that we spend them living, not dying.’

And that is what I intend to do.

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.

Screen time – how much is too much?

There was a post in a Facebook group recently from a mum looking for some reassurance. She was concerned about the amount of screen time that her SEND child was getting and wondering how others dealt with the same issue.

There were lots of helpful/non-judgemental replies (social media CAN be good!) and mine was as follows:

    ‘If I had my way, my kids would only have 2 hrs max during a day. But Pudding didn’t get that memo. He had about 8 hrs today. So hard to get him to engage with anything else, and certainly I couldn’t get anything else done when he’s around otherwise.’

That earnt me some grateful reactions from other parents. And of course there were many others who said similar things. It’s always good to know that your child is not the only one

It’s a subject so tied up in Mummy guilt even with children who don’t have any issues. Am I doing enough for my child? Am I teaching him/her the right skills? Will he/she become addicted to games/be able to interact with others/learn to cope with boredom/get enough exercise. The ramifications are endless and I’ve had more than my fair share of anxiety over it in the past. But lately I’ve just gone with the flow.

Pudding watching a film on his tablet

If screen-time for Pudding is what makes life easier – for all of us – then that is what we do. We work hard to engage him with other things when we can and sometimes we even get to celebrate not putting on the TV until 2pm! (Usually only if we have made it out the house on an outing.) But other days…? Well, if we want to get any washing up done, or prevent T getting hit or have 5 minutes to ourselves, then screens are our friend…

Some of his time is spent playing on his tablet which at least is slightly more educational. Pudding has learnt to do some of the simple jigsaws and can even spell ‘bus’ and ‘egg’ on the Alphablocks app. But he won’t tolerate the tablet for too long. Once he has tired of it, that will get launched at us too. And tablets are quite heavy! So mostly it is TV. And if that is all day, then so be it. It’s easy enough to stop T from over-indulging as well – he has so many other interests so we can read together or play a game or he’ll go and play Lego.

That was all this blog-post was going to be about: a statement that no amount of screen time is too much. But I’ve realised that’s not actually true. For me.

I spend far too long on a screen lately. It’s crept up on me. More and more time scrolling endlessly through social media, falling into that trap of worrying that I’ll miss something, wanting to feel connected. And when I’m not on the computer, any spare 5 minutes I have I’ll pick up my phone to play a game (I’ll not tell you which as I don’t want to be responsible for getting you addicted as well!). More often than not, the 5 minutes stretches to 10 and then 15…

I thought it was an escape from everything else when I couldn’t face the To Do list, but it doesn’t really work like that. Maybe for the 5 minutes/half an hour/two hours that I’m staring at the screen, I stop thinking about stuff for a bit. But it’s still there when I look up again. Only it’s a little bit worse because weeks or months later I still haven’t tackled any of it.

When we were in hospital earlier in the week for two overnight stays (routine blood samples) I bought a magazine called Psychologies. Although part of me laughed a little at the article formats that encourage you to change your life in easy-to-follow steps, I guess somehow it has worked. This morning I woke up determined to be better.

I have done two coats of paint in a cupboard upstairs. And at least three times when that game was calling me, I ignored it and chose to do something more useful instead. My world will not implode if I have less screen time. And I could become a heck of a lot more productive.

I hope I can keep it up. Wish me luck!

Looking back

I’ve been avoiding writing another blog post and it took me a while to work out why. With the New Year comes the time to be making resolutions and looking forward. Yet with so much uncertainty around Pudding’s future at the moment, I don’t think I want to…

So, in order to make myself feel a bit better I have decided to look back instead and focus on some of our achievements instead.  Three from Pudding and three from me:

 

Pudding wearing a felt toy shopping basket on his head.

Pudding’s achievements

I do sometimes find it hard to stay positive about how Pudding is doing, particularly when his speech seems to be declining, but when we look back there are definite improvements in some areas.

  • His ability to focus has got so much better…when he wants! From standing in line in a PE class to knowing that he has to tidy up first before getting TV, it shows not just focus but understanding.
  • School only introduced PECS part way through last term, and none of us expected him to do so well. He grasped the concept of Phase 1 really quickly – learning that if he gives someone working with him the picture of sweets for instance, he will get those sweets. (If I remember, I may do a longer blog to explain all about it – you lucky, lucky people!)
  • We’ve discovered that he loves having little jobs to do and seems to get such pleasure in completing these routines. Putting his socks in the washing machine, delivering the register at school, sorting the cutlery into the drawer and ‘helping’ with the washing up, all bring a big smile to his face and to ours.

My achievements

  • Top of the list – I’m a much better driver than I was 2.5 years ago. I’ve never been that keen on driving and would always do my best to avoid long trips. One MPS diagnosis and countless trips on the M62 later, and I’m a pro.
  • Historically I’ve also not been much of an active person. But I can now go from 0-60 in about two seconds flat when Pudding makes a break for it. And my weightlifting capacity is increasing at almost the same rate as his size.
  • As my third I was going to put that I’ve learnt to be more patient, but I’m not sure that’s actually true. Perhaps I can at least say that I’m still trying, despite the odds! It’s definitely easier simply to put the TV on given the constant demands, and sometimes I do just give in. But sometimes…I don’t. Sounds ridiculous but I consider it a major achievement that this afternoon I actually got Pudding to do a few jigsaw pieces first.

Hubby and T have had their successes too of course. And whatever happens going forward, I know we’ll all continue making those baby-step achievements. But of course the best thing about looking back or forward is this gorgeous face. The face that can turn my rainy day to sunshine even when I’ve had not enough sleep and am grumpy as hell…

Smiling Pudding in profile with blurred greenery in the background.

Happy 2018, everyone!

Trial Update

So we’ve reached that cliff-edge a little sooner than I thought.

Today, Shire (the pharmaceutical company that is running the trial) released this press release. I’ll give you a moment.

Read it? Confused? I’ll see if I can translate….

Now that all the boys have completed their first year on the drug or in the control group, Shire have looked at the data. Specifically they were looking at those dreaded cognitive assessments and seeing how they differed in the boys receiving the drug and those who weren’t. And these results haven’t shown enough of a difference to take the drug forward for approval.

To be honest, I’m not that surprised. Pudding hates the tests almost more than I do, and for the last two times at least has refused to do tasks that I know he is capable of. Why should he draw a circle for the man when he knows there is a football outside that he could be kicking down the corridor? These old-fashioned cognitive tests simply don’t work well with our MPS children. (And yes, clinicians and parents have already been telling them this.) Also, a year is such a short time to assess change in a long-term progressive disease.

So, the pharmaceutical company is going to now look in greater detail at the results from each individual to see if they can pick out useful trends and data. Many families – particularly those with boys who have been on it for years – can tell them of so many ways in which it is working for them. But I simply don’t know if in the end, that will be enough. In the meantime, Pudding and the other boys already enrolled on the trial will continue to receive their dose as usual.

So, it’s not the worst news, but it’s also certainly not the best. We’re teetering on the edge of that cliff and all we can do is wait. And for those families hoping for this treatment to be made more widely available, the wait is even longer.

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(This is my first blog post for a wee while as Hubby has been doing some behind-the-scenes work transferring the website to a new home. Hopefully I haven’t lost anyone in the move. If a few email subscribers could wave to say you’ve got this, that would be great!)

Paperwork and assessments

Paperwork. Every SEND parent’s favourite thing. NOT!

Endless pages of assessments that never really become easier. The joys of having to answer ‘No’ to question after question about everyday skills that any unaffected five-year-old could do with ease.

When Pudding first entered the clinical trial his DQ (development quotient) score was 56 (so 56% of what another child his age would get). That put his abilities at around half his actual age. Two years later I don’t know what it would be now. He’s nearly six and I often describe him as functioning like a two year old, but although that’s true in some respects it is way off in others.

The last few weeks I’ve been filling in information for the Imagine ID project. This large-scale study aims to collect data from families on how genetic conditions affect development in children. I’m not complaining really, because it is something I have chosen to do – research is important. But I must admit it doesn’t always put me in the best of moods having to face up to the realities of Pudding’s abilities.

Some of it was pretty straight-forward – other questions not so much. For instance, it’s pretty difficult answering a question like ‘Does he blurt out answers in class more or less than other children his age?’ when he is non-verbal! And I’m not quite sure it’s worth getting him to do the ‘fun drawing task’ as it will just be a scribble.

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Anyway, I’ve now had the report through and it confirms (if I didn’t know already!) that he scores high for troublesome behaviour, attention difficulties and sleep.

And then we have also had the review meeting for Pudding’s EHCP (Education and Health Care Plan). This is a document that sets down what a child needs to have put in place to help them succeed at school. It is certainly more positive than some forms (yes, DLA form, I’m looking at you!) as it looks at what he has achieved alongside setting targets for the next year. For instance, this time we were able to put a tick next to ‘Can take his coat off’!

But again, it can be a bit brutal facing reality. The educational psychologist had been in to assess him and I was asked for permission to change the way Pudding is described from ‘moderate learning difficulty’ to ‘severe learning difficulty’. The teachers did apologise when asking this, as they were concerned about how I would feel. Looking at the descriptions though, I know it makes sense. When Pudding was first diagnosed he was at playgroup and his differences weren’t quite so obvious. As time goes on, he is progressing but at a far slower rate than his peers, and that gap is widening and widening. So that’s another label he’s acquired.

And on Tuesday it’s our next trip to Manchester with …guess what… the psychological assessments again!

But of course, none of these assessments will ever truly give a picture of Pudding is like. They can tell someone that he is non-verbal, prone to violent outbursts or that his DQ is hitting new depths. But they can’t tell anyone how gorgeous his smile is. Or how he does a funny little dance when he’s excited. Or how much we love him.

Which is why I’m getting better at looking past those forms and reports. And instead I keep in my mind pictures and memories like this morning when T went upstairs to get Pudding up. I watched on the monitor as my big boy sat on his brother’s pillow and gently stroked his head, telling him that he’d put his cereal out ready. I watched him bend down and kiss Pudding and help him turn the duvet down. And I knew that these little moments are what life is really about.

(If you enjoy reading about Pudding and don’t want to miss out on any updates you can subscribe to get new posts direct to your email. Just go to the ‘Subscribe’ section in the right-hand sidebar.)

Service Station

Service stations are so easy, aren’t they? You pull off the motorway, park up, and pop in for a quick loo-stop or a cup of coffee.

Well that’s how it’s supposed to work anyway. But not if you’re in a car by yourself with Pudding. On our frequent trips to Manchester I try my hardest to avoid stopping and usually arrive absolutely bursting for a wee.

On my last trip I decided I couldn’t wait so stopped half-way. As I drove in, I ran through the options in my mind. I could get the buggy out, but that would take a while to unfold and he’d be cross at going from car to buggy and back to car without any freedom. Or I could leave the buggy in the boot and take the risk of going freestyle.

Luckily there was a parent and child space close to the entrance. (Between a couple who had just parked and were sauntering in, and a lady sitting drinking her coffee before pulling away. Don’t get me started on people without children who park in these spaces!). So I decided go for the risky option, and held tightly onto Pudding’s wrist as we crossed the road.

Pudding smiling up at camera before climbing into the car seat.

I played an enthusiastic chase and tickle game to get to the toilet quickly and chose a cubicle at the far end. Pudding wasn’t keen on going in but we squeezed round the door together. He is getting pretty good at undoing bolts but dumping the bag by the door and jamming my foot against it meant I wasn’t exposed to the public while doing my business.

Washing hands while also trying to hold onto a determined escapee is fairly impossible but the minimum requirements of hygiene were achieved by distracting him with the paper towels.

Luckily he didn’t need a nappy change himself as that would be a whole other problem. More service stations are now including Changing Places but they are still few and far between.

And then he was off. In the wrong direction. As usual I tried to make returning to the car sound really exciting. As usual he drew a few stares while lying down on the floor in answer to that.

Next he made a dash into WHSmith and this is where the whole buggy-free risk paid off. He stood in front of the huge cabinet of drinks and said, ‘Oh Wow!’ (For full Pudding-effect, try saying this in a similar voice to Wall-E). He then grabbed a Fruit Shoot and clasped it to his chest, looking at me with that irresistible cheeky smile. I caved and said he could have it.

I couldn’t believe what happened next. He pattered over to the till and waited till the person in front had paid, then handed it up to the lady. Showing not only that he knew we needed to pay for it, but also that he could identify where we had to go. Such a small thing for most children but I was so proud I was ready to burst. The lady serving probably thought I was crazy when I gushed about how wonderful he was. But I don’t care! My Pudding is wonderful and he is progressing in little ways.

Take that, Mucopolysaccharidosis! He is kicking your butt!

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