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Ten years

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Ten years on this emotional roller coaster.

Ten years of appointments and tests.

Ten years of watching every change and symptom and wondering which are serious.

Ten years of hugging my boy just a little bit tighter because I don’t know how long we’ll have him.

Ten years of being able to spell mucopolysaccharidosis, when most people have never even heard of it.

Ten years of waiting.

The first years after diagnosis were truly awful. As a parent I can’t imagine anything worse than hearing that your child has a condition that will kill them. Looking back at early posts, I feel such compassion for the mother pouring out all that raw emotion on this blog. It’s compassion for myself of course, but it feels so long ago and like it was a different person. Because of course, nobody can live like that for ever.

There have been so many changes along the way – in my sweet Pudding, who can no longer run or talk or smile or even eat in the way he used to – but also in myself. And in this blog also. I rarely put anything on here now – finding it easier to update occasionally on Facebook.

Sometimes though, I still get the urge to write, to pour out all those emotions again. Writing can be therapy – a simple release of pent-up thoughts and feelings, sending them out into the web to hopefully receptive ears. It has got harder though. More complicated. At first after diagnosis my emotions were hard to deal with – anger, fear, confusion – but they were common reactions to grief, acceptable even. As time goes by though, I have sometimes held back, unsure whether I can share more difficult thoughts. Whether I can admit to not being or thinking as a mother should.

But as the family support worker at Martin House told me, none of this is supposed to happen. No parent is supposed to hear that their child will die. So is it any wonder that these thoughts come up?

You see, earlier this year Pudding was going through a difficult patch when he cried and cried and we didn’t know why and we couldn’t comfort him. Tears from your child do horrible things to you when you don’t know if they will ever end. I held his hand and he looked into my eyes and he continued to cry and I told my sweet sweet boy, ‘I want you to die’.

There you go. That’s the mother I am.

I could say that it was for him, that I didn’t want him to suffer any more. And of course I don’t. I’ve written before about how I want his end to be quick, with no pain. But in that moment of desperation (and I have to admit, still now as well) I wanted it for me too. However much I love my boy, however much I take comfort on the good days from his curly head resting on my shoulder and his quiet breathing, however much I live in the moment… ten years of waiting is too long.

I’ve always planned and researched the next stages that MPS will bring us, and have always struggled with the unknowns. And of course, the biggest unknown has always been ‘how long have we got?’. As he has slowly lost all his skills and heads into the final stages of this condition it feels more and more like a waiting game. And despite the peace and gentle joy of our day-to-day existence, that sometimes seems like the hardest part.

No parent should ever have to feel like this. So on MPS Awareness Day I lay out my heart to you and say we need funding. We need research. We need a cure.

(Photo from 2018. I think we all need a Pudding smile after that.)

My love

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My love for you is everything
More than I ever expected
More than I can ever describe though still I try

My love for you is sorrow
For the boy who ran everywhere and now stumbles
For the boy who approached the world with open arms and a wide grin
For the boy of my memories who is slipping away

My love for you is sunshine
A thousand bright fragments of light dancing through my heart
A glow that banishes darkness to the corners of my mind

My love for you is strength
To make the impossible decisions
To keep walking this tear-washed path
When I have wanted to run far and fast in the other direction

My love for you is regret
For all the things I have left undone
For all the times I should have fought harder

My love for you is ferocious
The impulse to rain never-ending kisses on your brow
A mamma bear protecting her forever cub
A tempest to keep a cruel world away

My love for you is serenity
The comfort of a blanket
The eye of the storm

Everywhere and for always

My love for you just is.

Quilt

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Some places are just special. Martin House Hospice is definitely one of those.

You feel it as you walk in. The welcome smile, the rainbow of pictures, the jars of cakes – it all feels like one big warm hug.

Of course we haven’t actually been there for a while. We were due for a visit at the end of March 2020, but then…well, I think you all know what happened. But Martin House has still been there for us. There have been parents’ meetings on Zoom complete with a delivery of cakes, activities sent through for siblings. And most importantly, there has been somebody at the end of the phone when Pudding has given us a worry (which he always seems to do on a weekend when it’s much harder to reach our normal hospital staff!)

Many charities have struggled over the past year and a half as normal fundraising events have been cancelled and donors have been faced with different priorities. So when my aunt let me have a beautiful quilt that she had sewn herself and asked me to use it to raise some funds, I knew exactly who I wanted to benefit.

This lovely purple hexagon quilt could be yours. To be in with a chance, follow the link below and donate at least £4.

I’ve chosen to do a ‘hundred square’ fundraiser, so everyone who donates has a fairly good chance! Well, better than a standard raffle anyway…

Just click- here – to make your donation and don’t forget to choose the option that will allow me to contact you or otherwise I won’t be able to let you know if you’ve won!

Disability

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Yesterday was the International Day of People with Disabilities. The perfect time for me to write about something that’s been on my mind for a while. Only, true to form, I’m now a day late…

(I should also point out that it was originally called International Day of Disabled People, and many disabled adults that I follow would prefer it still to be so. If you are interested, there is a wealth of information out there on the social model of disability v the medical model.)

It took me a loooong time to describe Pudding as disabled. At first all we knew was that he was a bit behind his peers, then came the mention of development delay. But still I thought he might ‘catch up’. The diagnosis of MPS (mucopolysaccharidosis) meant having to alter all our preconceptions about what his life would be like. Yet I still didn’t really think of him being disabled.

Looking back I know it is down to deep-rooted beliefs about the word itself. I saw it as a fairly narrow definition for those with obvious physical differences. And, dare I say it, I saw it as a negative. Neither of which I wanted to use to describe my son.

Growing up I never really had much exposure to disability. I didn’t see many people out in society, very rarely on TV (although there is still a long way to go, this at least has changed massively since). At university I did volunteer for a project working with disabled children and young adults, but even in that context language and attitudes surrounding it never came up. Later I did know a few disabled people, but again the conversations just didn’t happen. So until Pudding’s diagnosis I was ignorant of so much of society. And I do feel guilty of that.

Pudding smiling widely seated in his wheelchair wearing a bright red coat with ladybird spots.

Over the last few years I’ve followed blogs and listened to disabled activists on Twitter. I know that disability is not a dirty word. I know that many disabilities aren’t visible. I know that an estimated 22% of the UK population is disabled in some way. And I use the word regularly to describe my son. Pudding IS disabled – both physically and mentally, and also by society in general. And that does not mean he himself is any less value as a person.

And yet, in a conversation the other day I felt bad for using the word. I was speaking to someone I’d only recently met and they asked about my work. Unlike the first years after diagnosis when I felt almost compelled to throw into conversation the awful prognosis of MPS, I tend to avoid it now. So I replied that I didn’t currently, that my son was disabled and ‘it was complicated’. Very true. Yet my tone obviously implied more, and their response was to say ‘I’m sorry about that’. That made me worry that I am continuing to perpetuate the outdated notion of disability being solely negative. But I don’t want to come full circle and kill conversations with the bombshell of ‘he’s got a life-limiting disorder’.

Some day I’ll find the right way to respond to a simple question!

Why MPS Awareness now?

On By huntersmumIn fundraising, Uncategorized6 Comments

A couple of days ago I wrote on Twitter that it felt strange shouting about MPS Awareness Week at a time like this. After all, why should anyone care about a rare condition that no-one has ever heard of, when they’ve all got their own worries at the moment?

But the more I think about it, the more relevant it does seem.

I suppose it also follows on from my last post – Trapped – that I’d completely forgotten about until coming on here just now. (Unsurprising. It was written a whole two months ago.)

Covid-19 has brought the whole world to a standstill. Normal life no longer seems real.  People are worried about the future, worrying about whether they can still work. Dealing with stomach-churning anxiety when doing the simplest of tasks. Stuck indoors and isolated from everyone else. We clap the NHS every week.

Welcome to the world of an MPS parent.

IMG_20170109_180120Listening to the emotions that many are going through during lockdown brings back memories of the time we were first told that Pudding had MPSII (Hunter Syndrome). It was a bombshell, rocking our world. All plans went out the window. I felt like I was stuck on a rollercoaster, my heart constantly lodged in my throat and life became more about hospitals and than school sports days, and NHS staff became my heroes. As time went by, Pudding’s behaviour often made it easier to stay at home away from other families who would point and make rude comments. Isolation among MPS families (as with others dealing with disability) is common.

But the analogy doesn’t hold up for long.

Covid-19 is a horrible virus, that spreads easily and has caused many deaths. But we will see an end to the chaos eventually. Scientists are working flat-out on vaccines and treatments. And until then, unless you are in one of the vulnerable groups (which include many people with MPS) there is a good chance that you will pull through.

Some types of MPS do have better treatments right now. But particularly for those with progressive MPS 2 or 3, once the crisis of Covid-19 is over, the future still doesn’t look bright. Once we have been handed that diagnosis we know what the future will bring, and it is not one that any parent wants to hear.

I don’t mean to underplay this trauma that everyone is going through right now – after all, we’re going through it too. But I hope it explains why I will still shout louder about MPS awareness at this time.

Please join me on Twitter or Facebook on the 15th May in wearing blue (or purple internationally) – we’d love to see your pictures.

Memory

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So what does it mean when I say that MPS is a progressive disease?

Things change, but ever so slowly. Skills lost so gradually that I barely notice until months later when I’ll suddenly realise that something else has gone. And sometimes I don’t remember at all.

I know that he’s lost pretty much all his language now, and can list off many of the things he used to name when we looked at books together – cow (moo), bird, cat, clock, fish, shoe and so on. I can still hear his voice in my head sometimes but I wish I had so much more on video. 

Pudding in the garden chasing a ball with a big grin on his face.But Facebook reminded me the other day that he used to say ‘kick’ or ‘roll’ in context too. Both long gone. Even the way he plays football has changed – his skills used to be amazing and he can still wow strangers with his kick. But these days he’s more likely to simply pick the ball up and run away with it – of course with a big cheeky grin.

The way he used to say ‘Thank you’ would melt your heart – also forgotten until another MPS mum mentioned it recently. And just yesterday a memory came up from five years ago that he’d tried to sing ‘Twinkle Twinkle’. I literally cannot remember this at all, can’t even picture the possibility.

Maybe it’s just my memory keeping me safe from mourning too much. Maybe I’m getting better at living in the moment.

But sometimes I’m scared that I’m forgetting too much. And I want to preserve all these precious ‘last times’. Gather them up and hold them safe, even when I can no longer hold him.

Letting go

On By huntersmumIn family, Uncategorized11 Comments

I think over this Christmas period I’ve found the secret to happiness.

That is, I’ve found it before, but never really known how to articulate it. Letting go.

Letting go of the way things ‘should be done’. Letting go of preconceptions. Letting go of the idea that the opinion of strangers actually matters.

It’s a path that many parents of disabled children have to travel. We have all sorts of ideas about how parenting will be: the experiences from our own childhood that we remember and want to repeat with our children, and those that we want to avoid; the plans for their future – school, university, work, marriage. And then the slow realisation that things are going to be different to our expectations.

Maybe that journey goes faster for those with disabilities apparent from birth, I don’t know. With a condition like MPS though, when development is relatively normal at first, the realisation is slow. Painful at first.

Pudding with an enormous smile, watching TV

Over the last few years we’ve gradually adjusted to Pudding’s world and at Christmas I think it’s even more apparent how far we’ve come from what I would previously have planned. He is at his happiest with his beloved cartoon films on tap, and getting plenty of attention from people on his own terms. So that’s what we do. Christmas for us now is at home, with family visiting. TV stays on.  We don’t buy any presents for him – he doesn’t need anything and isn’t interested. This year, he even stayed asleep in bed until we’d opened all ours anyway. He definitely doesn’t feel that he’s missing out and I no longer feel guilty about that. I’m letting go!

How things ‘should’ be done really doesn’t matter. What matters is what makes Pudding, and us as a family, happy. This Christmas in our still-feeling-new house is probably one of the best I can remember. Letting go doesn’t mean giving in, or necessarily accepting second-best. Instead it’s developing new traditions and finding the joy in small things.

I don’t really make new year’s resolutions, though I do sometimes have aims for the year. But maybe this should be the theme for my year. Letting go, and finding the joy in small things. There are definitely worse ways to live.

I hope 2020 will bring each and every one of you some joy too. xxx

Today I cry

On By huntersmumIn family, Uncategorized5 Comments

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

On By huntersmumIn fundraising, Uncategorized1 Comment

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…

IMG_6520

 

 

Magic moments

On By huntersmumIn Uncategorized3 Comments

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.