Conference

Timetable for the MPS ConferenceQuite a few people commented yesterday about the nice weather we’ve had this weekend. I know there was sunshine but I barely saw it as I was sat indoors in a dark room listening to presentation after presentation at a conference.

Not most people’s idea of fun, but I loved it. Because this was the conference organised by the MPS Society. It gathered together individuals, families, clinicians, surgeons and experts on mucopolysaccharidosis and other related conditions in the Hilton Hotel, Coventry. The whole hotel to ourselves, so no-one around to raise eyebrows at the wheelchairs dancing through reception or a child trying to make a break for freedom being chased down by a harried parent. From the moment we were greeted by the friendly MPS staff, we knew we were amongst family.

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

There is no doubt of course that living with MPS can be a stressful business, so the weekend started off with a session on mindfulness which Hubby found very useful. T and I managed to sneak in a visit to the hotel pool and then we were ready for dinner, the kid’s disco party and the chance to get to know other families. It’s a slightly surreal experience to meet people that I’ve only ever seen in photos until now, and greet them like long-lost friends. But that’s what it’s like when we’re tied together by this bond. MPS is no respecter of age, background, education or race and it forges close friendships that last through the years.

On the Friday evening we also got to meet our volunteers – wonderful wonderful people who gave up their weekend to take our children off and give them a fantastic time while we sat and listened to all the presentations.A few capsules on a ferris wheel It was a little nerve-wracking to send a challenging child like Pudding off with a complete stranger but I cannot sing their praises enough. For the brief hour that I saw T on Saturday – in between their trip to Drayton Manor and the evening entertainment – he talked non-stop about their volunteer and how great he was.

On to the main business of the conference itself – talks on all aspects of life with MPS, from cardiac complications, behavioural issues through to new treatments round the corner. Some of the presentations weren’t for the faint-hearted; Hubby had to look away when faced with slides on carpal tunnel surgery (not me, I find that sort of thing fascinating)! Some were more challenging on an emotional level – looking at Pudding’s future face-on can be a scary thing. And then there were the inspirational ones, like a teenager talking about living with MPS I (Hurler-Schie) who refuses to let it define her.

Air-con vents on the ceiling of a coachThere was more emotion at the Gala Dinner on Saturday when awards were presented to those who’ve made a difference to the MPS community. People who’ve gone above and beyond to raise money, campaign for treatment or support others. I might have cried just a smidgeon. I blame the wine. Afterwards there was time to let our hair down and have a go at some funfair games while the childcare volunteers continued their stirling work. We even got a little goody bag with items donated by a few companies.

The weekend was inspiring, disheartening, informative, tiring, relaxing and wonderful, and I can’t wait till the next one.

(The photos I have are mainly alcohol-fuelled Saturday evening ones on my phone, so I am illustrating this post with T’s slightly random pictures!)

Nothing and everything

In the run-up to MPS Awareness Day on May 15th, the MPS Society is asking us all ‘What does MPS mean?’

Last year I already wrote a long (and emotional) post about what it means to me as a parent. Of course, most of this blog is from my perspective. I share what I’m going through, what I think. It’s my personal journey through the minefields of MPS.

But what about my Pudding? What does he think of MPS? Well, there’s the great unknown. When your child has only limited words, even a simple conversation is impossible let alone an in-depth one. He has certainly heard those dreaded initials often enough in our house, but have they made any impact on him? I doubt it.

He doesn’t know why he has to put up with treatments and needles. He doesn’t know why he can’t talk. He doesn’t know why he is different to the other children in his class. I’m not even sure he realises he is different. 

MPS has sculpted every bit of him. From his big belly, and the fingers that don’t straighten to his broad nose and big forehead. But when he looks in a mirror he doesn’t see that – he just smiles at his reflection in the same open way that he does with anyone else he comes across.

That simple mistake in his DNA that has turned our life upside down for the last two years means nothing to him. And in a way I’m glad. For if he ever gains enough ability to question it, how could I possibly explain?

 

(If you’d like to let the world know what MPS means to you, you can download the poster from the MPS Society website. Share it on social media with the hashtag #WhatMPSmeans)

 

What will you do?

One hundred years ago Charles A Hunter, a doctor working in Canada, first described the symptoms of Hunter Syndrome. In 2017, there are still children dying from this and other mucopolysaccharidosis conditions. That is why MPS Awareness Day on 15th May is just as relevant as ever.

Every year we ask friends and family to join us in wearing blue (purple outside the UK). Clothes, hair, lipstick, nails – whatever you like really. Last year it was a Sunday, so me and the boys went out to a nearby stately home with Sister, Niece and Nephew, all dressed completely in blue. This year it’s a Monday – so great for making maximum impact at work, the supermarket  or wherever!

The MPS Society have resources such as posters and fundraising ideas to help. You can even change your Facebook or Twitter picture to MPS Awareness. Go have a look and get involved – I’d love to see your pictures on the day itself!

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!

 

Rare

When you leave your house today, as you go to work or the shops, look around. 1 in 17 people could, at some point, be affected by a rare disease. In Europe that’s defined as one that affects fewer than 1 in 2000 people.

So how do you spot someone with a rare disease? The man jogging past you may need to take daily medications due to Addison Disease; Charcot-Marie-Tooth disease might be the reason that lady is taking a rest on the bench; the child over there may be behaving ‘strangely’ because of his Tuberous Sclerosis. You may even see someone with 3-hydroxy-3-methylglutarylCoA synthase deficiency, though that’s unlikely as there are only 9 reported cases.

The point is that even though some of them are vanishingly rare, rare diseases added up together are more common than you think. But also they are not always easy to spot, unless there are obvious facial features or mobility aids. At some point it could be you, or a friend or a loved one who gets hit with a bewildering diagnosis.

Two years ago I had no idea about World Rare Disease Day. Nowadays though my Facebook feed is pretty different than it used to be; it is populated with pictures of other boys who also have MPS II (Hunter Syndrome), boys who look just like my Pudding. You see, when your child has a rare disease and you find your community, suddenly it doesn’t feel quite as rare. And on this day, we join together to shout a bit louder and raise awareness of these conditions that have limited patient groups and therefore limited understanding and treatments for them.

And today I celebrate rare. Yes, rare can still mean isolation and struggle and difficult times, but to me it also means this gorgeous smile which certainly isn’t rare in our household.

So today, take a few moments to think of us, share this post and show that you too Care about Rare.

Healing for the Soul

I haven’t posted on the blog for nearly 2 weeks. Not the first time that it’s been that long but it does feel a bit weird. Sometimes gaps have been because we’ve been busy. But sometimes it’s because it can be hard to admit to what I’m really thinking.

Hard thing to admit # 1: I’ve been struggling with a low mood lately. If I’m honest with myself, I’d been struggling since Christmas. I’d been so pleased with myself for having things on a relatively even keel after the emotional trauma of diagnosis year that the dip felt like a failure. How could I feel bad when other people have it so much worse? How could I have a lovely time with friends and then weep as I drove away? How could I have so many things on my to do list, yet get home and feel the hopeless inertia take over?

It wasn’t as if anything major was going on, just the ongoing stresses of daily life with Pudding, worries about his future, fears about the new politics of fear and division, inability to sort out other people’s problems. Just the standard cares of the world really. In the end I burst into tears in front of our homecare nurse and admitted that I’d cried every day for the last two weeks.

The world didn’t end when I admitted that “failure”. In fact, just saying the words helped immensely. I don’t have to be ridiculously strong the whole time. Caring for a child with additional needs IS hard. And I am looking into finding a talking therapy and addressing some of the underlying issues that have been worrying me.

Hard thing to admit # 2: I enjoy having time away from Pudding. I have six hours a day of course when they’re at school. But that goes surprisingly quickly when you’re tidying up and doing other routine stuff.

T and I just had a weekend away with my family up North. As soon as we got to the Hotel of Mum and Dad (I wrote about this before), T ran off with his cousins to the other end of the house and I could relax knowing that I didn’t have to be on constant alert. We had a civilised trip on the train to visit more family and eat lots of lovely food. A lovely time for relaxation.

And the highlight for me was a trip to the beach. As I emerged from the dunes on a beautiful spring morning my soul opened wide and drank in the sand, the sun and the endless sea. ‘I’ve missed this!’ I shouted. I meandered along, picking up shells, while the others kicked ball and ran down sand dunes. The remaining stress ebbed away.

The healing won’t last forever, but it’s helping me get through half term with relatively little shouting and no tears (well, not from me anyway). Maybe the learning point from this is I need to add in a little dose of nature to my routine every so often. Landscape that doesn’t throw things or hit or judge. Landscape that just is, and is beautiful. Healing for the soul.

I didn’t take any pictures on the beach so here are some spring flowers instead.

PS. Dr Google told me that I didn’t have depression, and he was right, but ignoring my own needs could have led to it getting worse. If anyone reading this is struggling themselves, please, go talk to someone – a good friend, GP, whatever. Don’t feel you have to stay strong whatever the cost.

Sleep like a baby?

Having written about emotions last time, I’ve come to realise something (probably fairly obvious) this week. I am so much better at coping with everything when I am well rested.

I’ve had a few late nights recently, and I find it leaves me in such a fragile state of mind. When I’ve slept enough, I can keep things in perspective, write a reasoned blog post and get on with life. When I haven’t, I spend the day with a cloud of impending doom hovering over me and dissolve into tears at the slightest thing. And that can be hard to explain to outsiders. If they notice that I’m not being myself and ask what’s up, I have a choice. I can burst into tears and blurt out and say it’s nothing specific, ‘just everything’. Or I can blame the redness of my eyes on contact lenses that I’ve just put in, and to be honest that’s probably the easiest.

Recently I heard someone mention sleep deprivation after a few late nights. I didn’t comment!

I used to be a ten-hour-a-night girl. I lived in Sister’s house until Niece was a year old, but I would put ear plugs in and sleep undisturbed. When I got together with Hubby he could get up in the morning for his walk to work and I would roll over and sleep longer. If I had a late night, I’d be tired but knew I’d catch up with sleep the next night. I never questioned that luxury.

IMG_7007Then I had my own children. Everyone knows the theory – babies wake up all the time, but you get used to it, and eventually, sooner or later, they sleep through. And the sleep deprivation eases. I bought into that illusion. And yes, it did work with Twiglet. When he moved to a big boy’s bed (aged two and a half) we did have a few broken nights, but on the whole he sleeps like a log.

Pudding on the other hand…

Part of the problem I know is that since becoming a mother I think I simply don’t sleep as well as I used to. There is a small area of the brain that just stays on alert the whole time, listening out for the slightest sound, the slightest hint that your child needs you. And boy, does it get a work-out with Pudding!

Since he was a very young baby, he just hasn’t slept as well as ‘normal’ children. (Something I now know is common in MPS as well as other conditions such as autism) Every night he will wake up, perhaps at 9pm, perhaps at 2am, and have what I can only describe as a party in his cot. He’ll laugh and kick the bars and shout ‘You!’ at the top of his voice. He always sounds happy and goodness knows how he can have so much fun in the dark by himself, but I’m grateful for that at least.

Melatonin has helped. His wake-ups don’t last quite as long now – often more like half an hour rather than two hours. But in different surroundings, such as the hotel room in Manchester or the hospital ward, it can be difficult to persuade him back to bed once he’s awake and decides it’s time to play.

At home he has always been contained in his cot but this can’t continue for ever. With his size and slightly increased flexibility (a benefit from his weekly treatments) there is now the very real possibility that he could climb/fall out. So we need to move him to a bed. We’re currently in the process of clearing out the office so he can have his own room, as Twiglet probably wouldn’t be appreciate being jumped on in the night.

I’ve no idea what is going to happen. Will he stay in bed? Will he spend all night banging on the door to get out?

Wish us luck! And expect some more emotional sleep-fuddled posts from me in the near future….