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.

MPS Parents

Today is MPS awareness day – the fourth I’ve marked since Pudding was diagnosed with Hunter Syndrome in July 2015. Whilst I have come to more acceptance of the condition, I can never ‘celebrate’ it.

But what I can celebrate are the other wonderful parents that I have met because of MPS:

The parents who spend weeks in isolation with their child through a bone marrow transplant.

The parents who travel across the country to sit for hours by hospital beds.

The parents who want to be there for procedures but can’t leave work.

The parents who have to stay strong so they don’t crumble in front of their kids.

The parents who can no longer physically manage caring duties 24/7 and have to welcome strangers into their house.

The parents who have no option but to soldier on with no help whatsoever.

The parents who encourage their kids to achieve whatever they can.

The parents who have to make decision after difficult decision.

The parents who learn to take on the role of nurse as well, accessing portacaths to administer treatment.

The parents who hold down a screaming child for yet another needle.

The parents who fundraise and push for new treatments.

The parents who are reeling in shock at one child’s diagnosis and are then told that their baby may have it too.

The parents who step into the unknown on clinical trials knowing that it might not even help their child, but may pave the way for the future.

The parents who have had to give up hope of seeing a treatment in their child’s lifetime.

The parents who dreamed of planning university and weddings and instead plan their child’s funeral.

The parents who are watching their child slip away bit by bit.

The parents who have already lost their child.

The parents who wish they had never heard those three little syllables, M. P. S.

The parents who are convinced that they are broken, that they cannot fight any more. And those same parents who carry on regardless, day after day, because that’s what parents do.

The parents who will love their child, for ever and for always.

You are all amazing. You are all stars. I wish I could send you all chocolate and flowers but virtual ones will have to do…

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Magic moments

Those of you who only read our blog on this website may be forgiven for thinking our life is pretty miserable at the moment. The way I write has changed a bit over the years and now I mostly use Facebook to update people of the everyday fun things and cute pictures. And I save my emotional ramblings for a ‘proper’ blog post.

So, my dear website readers, I owe you an apology. Because despite all the struggles and difficulties and horrible decisions, our life is often not miserable at all. There are many, many magic moments and I want to tell you about a few recent ones.

Posting

img_20190114_1802069195b15dAt home, it’s very rare now that Pudding will concentrate on anything for long other than TV. Even playing with cars on his garage which used to be a real favourite only lasts a minute or so now before one of them gets thrown. So when he does truly focus on something I hold my breath and revel in the moment. I just adore the concentration on this face as he posts each chocolate coin into the tin.

Christmas performance

As some of you will remember, the last Christmas performance Pudding was involved in at mainstream didn’t go all that well. He was grumpy and hitting anyone in reach and I watched in tears. This year, his first in specialist provision, I wasn’t really sure what to expect apart from organised chaos. That bit was certainly true, as children careered across the stage in inappropriate moments, forgot words and stood excitedly waving at parents. But it was the best organised chaos I’ve ever seen.

Each class were singing or performing to a song that they’d chosen or helped to write. There was warmth and enthusiasm in bucket loads and I was already in tears when one child who’d chosen to do a solo lost it in front of the audience and was rescued by staff members who gently encouraged him to keep going and finish the song with aplomb.

Then came the moment I’d been waiting for. It was time for Pudding’s class and ‘Let it snow’. When he is let out of his chair it’s a toss up as to whether he’ll join in something or just run away. But he went straight to the bucket the teacher was holding, reached in and pulled out…an indoor snowball!

The joy of schools like this is they can play to individuals’ strengths and boy, did they play to Pudding’s strengths! He threw those snowballs with all his usual enthusiasm into the crowd of cheering teachers and children. And I cried of course – but this time it was definitely happy tears.

PECS (Picture exchange communication system)

img_20190121_1554311055b15dDue to the deterioration of his brain from MPS, Pudding has lost skills over the last year, including most of his speech. So any achievement that he makes is huge to us. So I loved reading the following in his home-school communication book:

‘P has two symbols on the front of his PECS book and today he went inside his PECS book to find the symbol he wanted  – biscuit!’

Typical that the motivator was about something to eat, but I don’t care. Communication is communication, and for him to actively search out the card he wanted shows a leap in understanding of how it works. Even little advances like this might make it possible for him to let us know what he’s after.

Snowballs

You might have gathered how much my Pudding loves throwing, and indoor snowballs have been a godsend lately. They certainly hurt a lot less than most other things that get launched at us! But that’s not why I love them so much. The reason is plain to see in this video – his utter joy when playing is inescapably infectious.

So is our life sad? Well, aspects of it can be, yes. But these magic moments are more than worth living for. Even just the daily routine of watching him watch TV – seeing his ever-expressive eyebrows and hearing those deep chuckles – lifts me out of the abyss.

Pudding is our constant. We may go out to work, school, volunteering; we enjoy time away doing things that he can’t join in with and it’s important that we have a break. But it’s always a joy when we return to him, the pivot around which we revolve. He is the heart of our family and I wouldn’t have it any other way.

Video

When I started this blog I chose to make it semi-anonymous, not using names or making our location clear. It felt important to keep the family’s privacy, particularly as T might not want things shared when he’s older.

Yet I also want to raise awareness of MPS of course, and sometimes those two aims collide.

A while back we were approached to take part in a documentary being filmed by a final year film student. I agreed, knowing that it would be pretty much impossible to not use names in something like this. But after all, if it looked rubbish and I hated listening to my voice I’d never have to share it.

It isn’t rubbish, and I’m not actually wincing when listening to myself. Hopefully it does a good job at capturing the highs and lows of living with a Pudding.

I’ll carry on with the pseudonyms because it’s habit now, but if you click on this link here we all are

(Thank you, Josh, for doing an amazing job. Hope you get good marks!)

Looathon

The theme for this year’s MPS Awareness Day on May 15th is ‘My MPS Hero’. I think most of you will be able to guess who that is for me!

But today my heroes are completely different.

I’ve mentioned the campaign to get more Changing Places toilets installed before. Although provision is growing, there are still however only 1104 in the whole country. To put that into context, research suggests that there are over a quarter a million people with severe disabilities who cannot use a standard accessible toilet and need the extra facilities that a Changing Places loo provides. A quarter of a million adults and children who have no choice but to either stay at home, sit in their own waste or be changed in inadequate conditions.

Today to highlight this issue there is a fantastic group of people sitting in a Bathstore shop window in Baker St, London with their pants down. Shocking? Not as shocking as lying your child on a toilet floor.

Some people have criticised this way of raising awareness, saying surely it’s better to put together a petition, speak to government and try to get the regulations changed. But do you know what, all those have been tried already. Maybe this way, people will actually sit up and take notice and wonder what it is really like to have no rights to dignity. After all, any one of us could end up with a life-changing disability and be in this situation too.

looathonAs Sarah Brisidon, the pants-tastic organiser of this event says, she’s doing it ‘because my little boy (& every disabled person) deserves more than a toilet floor’.

If you want to get involved and can’t get down to Baker St in person to gawp (um, I mean support), you can take your own #looselfie and share on social media using the hashtag #Pantsdown4equality

Here’s mine! It’s only a small contribution, but the real heroes are those who keep on campaigning for change and will go to almost any lengths to make it happen.looselfie

 

PS. Once you’ve finished celebrating these heroes, don’t forget to wear blue on 15th May for MPS!

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)