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!

 

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.

Circles

At this difficult time, my mind has been turning circles: reading up on options, moving towards a decision, learning more, wavering again. Yet strangely, I am finding it easier to deal with than the period just after diagnosis.

After diagnosis, when we first heard the word mucopolysaccharidosis, the bottom dropped out of our world. Learning that our little boy had a progressive, life-limiting condition left us reeling with shock, anger, grief, guilt…the lot.

You may have seen that diagram of a line showing what we think grief looks like, and then a tangled scribble saying this is what it is actually like. (Sorry, I don’t have a copy and wouldn’t know who to credit if I redrew it myself.) Well, that’s what it also feels like going through this journey. Emotions really aren’t linear. They’re complicated; overlapping and folding back in on themselves, circling round, revisiting you when you think you’re already done with that one. Ebbing and flowing. And over time, I’ve found them easier to deal with.

So even though we’re making this life and death decision for Pudding, it is with four years of experience behind us and without that paralysing shock punching into me every morning when I wake up unawares.

OLYMPUS DIGITAL CAMERA

My brain is full of ‘what if’s and consequences but I can still laugh with my friends and have funny conversations with T on the school run. Seemingly simple tasks like booking a taxi are sending my underlying anxiety into stomach-churning levels, but yet I still managed to sort out my hoe insurance ten days before the deadline. I may find it hard to concentrate on planning meals, but can still enjoy eating. I need a hot water bottle at night to ease those tense muscles, but my mind has mostly let me sleep.

The world keeps on turning and another aspect of my life has circled round to bring home how far I have come. I’m rehearsing for a play at the moment, and it’s being directed by the same person as the play I was in at diagnosis time. I have always loved acting – the chance to step away from real life and be someone else – but back then it was tough. Everyone was very supportive and there were numerous times when I had to leave the rehearsal room to go and cry by myself. But now? Well the play is pretty challenging, dealing with family relationships, love and loss and I am finding it quite cathartic in a way – I may not be able to shout and scream at MPS in real life, but I can channel that into my character.  And though they may know I have a disabled son, I doubt most of the cast have any idea of what we’re currently facing and that’s the way I’m happy for it to be. I would do anything for my Pudding, but I also need to be just me sometimes. An ordinary person doing ordinary things.

And as for the future…? We have probably made our decision, but we’re sitting with it for a while, to check that it feels right. All your messages of support and love for Pudding really has helped, so thank you.

Holiday challenges

Trying something new can be difficult. Challenging.

And when you’re making decisions on someone else’s behalf, it’s even easier to stick with the same old things. I know I’m guilty of that with Pudding. I know what he likes and often don’t branch away from the tried and tested. After all, I can’t ask him what he thinks.

CPWe’ve recently come back from a holiday at Center Parcs at Sherwood. A tried and tested formula for us. We go with the whole of my family (parents, Sister, Brother and their children) so there are lots of people around to chat with or do activities. I loved going before Pudding was diagnosed with MPS, and I’ve come to appreciate it even more since. Holidays can be challenging for us in many ways, but I know what we’re getting at Center Parcs. I’ve always found the staff to be really helpful and responsive regarding Pudding’s accessibility needs and they even have a Changing Places toilet in the Sports Centre with another one planned in their pool revamp.

While we’re there, all the other kids get to try out new activities, stretch themselves and their abilities. We find things they like and things they don’t, and that’s ok. And I need to remember that Pudding deserves that chance too.

This holiday I challenged myself and booked him on the Mini Captains Adventure – a boat ride for young children with one accompanying adult. I had suggested that we could draw straws to see who went with him, but no-one else was brave enough!

To be honest, I had no idea what he’d make of it. The success of an outing or activity can depend very much on his mood at the time (and whether he’s had something to eat). But I was prepared for pretty much anything short of being capsized.

It’s often the people we encounter that can make or break an experience for us. I often think Center Parcs have good customer care and the chap running this session was no exception. He was very happy to accept us on our terms and didn’t bat an eyelid when Pudding sat in his wheelchair watching his tablet throughout the safety briefing and instructions.

Grandma, Brother and Sister had come along with us for moral and physical support (very useful when it came to getting the chair across a short stretch of beach), but found it terribly funny when the instructions told us to visit each buoy in turn and note down which picture was on them. I very sensibly decided to ignore them and the instructions!

Pudding looking through the front window of a boat holding onto the steering wheel. I am sitting by him, arm just visible guiding the wheel too.Once the other three boats had set out (again, my decision) we got Pudding out of his chair and took him down onto the jetty. The massive smile on his face made it worthwhile even just for those few seconds. Manhandling him into the right place on the boat was a bit difficult but we did it. And then we set out onto the lake.

He loved turning the wheel, but wasn’t quite so keen on me actually steering so our progress on the water was somewhat erratic! He also loved the occasional person zooming past overhead on the zipwire. I had a feeling though that a good mood wouldn’t last too long, so after a while negotiated back to shore. Seeing his fan club there brought more massive smiles and we even got a picture of him holding his Captain’s graduation certificate.

It was probably the most expensive ten minutes he’s ever spent, but I don’t care. We tried something new!

(PS. I am not being paid for this post and haven’t been asked to promote it, so any advertising is entirely coincidental – just my opinion! Other holiday companies do exist, etc, etc)

Conference 2019

Saturday was the hottest day of the year so far, and what was I doing? Rubbing away goosebumps in a conference room in Coventry…

We’ve just spent the weekend at the MPS Society Conference – a weekend of talks, coffee, cake, chatting, more cake, more talks, partying and talks. Full on and exhausting, but most definitely worthwhile.

We’ve attended events each of the last two years, so you might think that there is not much more information I need to take in. Yet there are always some useful snippets that I pick up on, something to reassure me about the next steps we’ll be facing. I won’t bore you with the many details that I scribbled down in my notebook – info about changes in the corpus callosum relating to behaviour, warning signs to look out for as swallowing function declines (oops, I just did!). We’re lucky with the health professionals we see in Manchester in that any questions I have are always answered. But sessions at conference often answer the questions that I didn’t know I had.

And as always, it’s the chance to talk to other parents and individuals with MPS that is almost more important. Chatting with others who just get it.

Unlike in previous years we didn’t take Pudding with us – the date coincided with the weekend we’d been offered respite at Martin House Hospice. It did feel a little odd being at an MPS event without him, but in a way he was very much with us still. Walking down the corridor to our room, I could picture him thundering down the very same corridor two years ago. Helping myself to juice at the breakfast buffet I heard a little voice in my head, shouting ‘Du!’. And of course, every snippet of information that I stored away was one that will inform his future.

bananaT had a super time in the children’s programme (trip to Drayton Manor, magic show, DVDs and more sweets than I could possibly approve of). But it occurred to me that maybe one of the greatest benefits to him of the weekend was the chance to be play with us and be silly, released from the responsibilities of having to be the sensible big brother  while we concentrate on Pudding. (Yes, that is him and Hubby having an inflatable banana/guitar duel.)

And last but not least, I stepped way out of my comfort zone by standing up on stage to sing a solo in the MPS talent show!

It’s strange writing this today, exactly four years on from the confirmation of Pudding’s diagnosis. Back then it would have been too overwhelming, too difficult to contemplate choosing to spend a whole weekend immersed in the MPS world. I would have sobbed my way through the first couple of talks before hiding in the loo. So much has changed in the past four years, and while not everyone will find the same path through this life, for me embracing times like this can certainly have positives.

Pudding smiling in a red ladybird jacket.

(If you’d like to see some of the highlights from the weekend, have a look at this video. You might spot me!)

Battered

I have a fat lip today.

It happened yesterday when I was changing Pudding. I’m usually on my guard and can stay safe until I’ve managed to distract him with tickles and nonsense, but this time a well-aimed kick when I wasn’t expecting it caught me full on the mouth. It bled a bit and swelled up impressively.

Poor me.

Only that’s not really the full picture, is it? All behaviour is communication and none of it was his fault. He doesn’t like being messed with (who would?!) so sometimes complains vigorously. It wasn’t a well-aimed kick – it was him flailing his legs around to try and get out of a situation he didn’t like. To accuse him of kicking me implies that he is capable of wanting to cause me pain and I just don’t think he could.

Yes, he deliberately hits out and kicks particularly in situations where someone is in his space or he is provoked. But not ever maliciously. There isn’t one iota of nastiness or spite in my boy. And I hope anyone who knows him would say the same.

But in life, of course, we meet many people who don’t know him. And that is why each and every interaction outside our safe zone puts me on edge.

OLYMPUS DIGITAL CAMERAYesterday, we had a trip out to William’s Den, a superb natural-themed play space for families (that also has a Changing Places toilet!). It’s out of our local area so, as I hoped, it wasn’t too busy being that we’re one of the few places where children are still off school. Pudding loved running around the place and exploring. When he discovered the hideout with cushions where some other children were building a den I knew he was likely to start kicking it over, and the children too if they happened to be in the way. They eyed him warily and I dived in as usual to warn, explain and negotiate his way through a world that often doesn’t understand him.

But our story is not really what this post is about. My fat lip was just a reminder about a door that isn’t often opened. A door to an area that many people aren’t aware of: parents who are on the receiving end of violence from their children.

You see, we’re pretty lucky really. Pudding is still good-natured and distractable enough to be managed most of the time. I get the occasional bump and bruise but it’s nothing compared with what some parents face on a weekly or even daily basis. It has been talked about more lately, partly due to the work of the lovely Yvonne Newbold who works tirelessly to ensure that parents and professionals learn from her own extensive experience. (If you are struggling in that position yourself, I do urge you to read some of her resources and join the Facebook page.) I know that our future is uncertain – as Pudding gets bigger and stronger, his behaviour may worsen too, but I know that I’ll be able to turn to places like this for help and advice.

Violent and challenging behaviour is hard to deal with in any situation. But then I also come across parents of (usually) autistic children who feel unable to raise this issue or even mention it for fear of backlash from professionals or others within their community. People who will jump down their throats and accuse them of bad parenting.

All most of us ever want to do is to keep our children safe, understand why they are acting the way they are, and let them know they are loved. And doing that without being judged or criticised doesn’t seem like too much of an ask. I am sometimes very grateful that I only have a small friendly readership and can rant on here in virtual privacy.

Not quite sure what this post has ended up saying really. But I suppose my (rather garbled) message for the day is: Be kind even if you don’t understand what another is going through.

Oh, and be prepared for a kick in the face every so often…

 

Magic

I believe in magic. I really do.

Not the magic from fantasy novels and films that I longed for as a teenager. I still love the escapism that those offer – the ability to vanquish enemies and do good in the world by concentrating your special powers. But I know that doesn’t exist.

I’m talking about a different kind of magic.

There is magic in so many aspects of life: a spring bud unfurling, birdsong soaring me skywards, sunshine on my face, music that has the power to raise goosebumps. The power of words that can tell me I’m wanted and loved. An unexpected gift. We just have to take the time to look for these and appreciate them to the full though I’m not always good at that.

One magic that works every time though is the power of one small boy’s smile.

Whatever mood I’m in, Pudding’s smile will sneak its way past my defences.

OLYMPUS DIGITAL CAMERAWhen I’m frustrated in the morning and am chasing a semi-naked boy round the house to get his trousers on before the school taxi arrives, he’ll look back at me and grin. Suddenly it’s not a chore, it’s a game.

When I’m trying to get the dinner ready while answering a thousand questions from T about Dr Who monsters and simultaneously sending an email, Pudding will worm his way between me and the work surface to look at the food. A hopeful smile and I cave, letting him have a tit-bit before he thunders back to the TV.

Half-asleep when I open his door in the morning, how can I help but respond to his excited grin when he pushes past me to throw himself onto our bed and his Daddy?

Even though I adore the peace and quiet of having the house to myself, the best bit of my day is watching him get out taxi and knowing the smile that lights up his face is just for me.

OLYMPUS DIGITAL CAMERAI love the games of tickle that Hubby plays with him, Pudding’s excited anticipation that breaks into deep chuckles; it makes me smile just thinking about them.

And then there are the times when I watch his face watching the TV. That beautiful slow smile spreading wider and wider until the magic shines out, wonderfully and irresistibly. His joy is bottled in my heart to buffer against the darker days.

There is nothing fake or forced about it – he simply wouldn’t know how.

The magic doesn’t just work on me; countless friends and strangers have been drawn in by it. He may not say hello or goodbye any more, or even acknowledge people as much as he used to. But one smile and it doesn’t matter at all.

Whatever he loses, I hope he never loses that. I know from other boys that their beautiful smile can stay long after much else has gone.

I believe in magic.