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.

Life and Death

On By huntersmumIn family, medical19 Comments

*Trigger warning – death and loss*

I’ve never really been a big fan of New Year’s resolutions. Why try and set yourself up to fail in the most miserable dark time of the year? (Eternal optimist, me!)  But maybe this post does fall into the ‘New Year, new you’ sort of vibe, though the subject matter not so much.

When I set up this blog I promised myself and my readers that I would always be honest about what we’re going through and how I’m feeling. I didn’t think it would be fair to hide any aspect of our journey because the whole point of it is to share, so that hopefully others on the same path could recognise their own problems and feel a little less alone.

On the whole I’ve stuck with that, but there’s one area that I’ve often skirted around and avoided tackling head-on. Mostly because I was scared about how people would judge me after reading it. I’m still scared, but a conversation I had recently made me realise that I may not be the only person who has had similar thoughts on this topic.

I think about death quite a lot. You tend to when your child has been diagnosed with a life-limiting condition. (I never quite understood the family member that told another MPS parent that they ‘focus on death too much’.)

But of course death is never a simple subject to touch on. I’ve never lost anyone very close to me. Grandparents and friends, yes. But not a parent, or partner, or child. So I can only imagine the pit of grief that swallows you up after it happens. I know it can never be easy losing a loved one, whether it is fast or slow, expected or not. And I hope I will not offend anyone by what I am writing here. But it feels particularly cruel to face a long, slow decline for someone you love more than anything.

So here goes. Deep breath.

I have sometimes wished my son would die.

Not now. Not while he loves life and embraces it with such obvious relish. But if I could choose, I would choose a swift and merciful end for him rather than losing him bit by bit. And in my darker times I have wished that it was sooner rather than later, just to take away the agony of waiting for it.

One of the very first things I ever read about MPS when Pudding was diagnosed was the Wikipedia page. It refers to a case from 2004 when a father suffocated his 10-year-old son who had Hunter Syndrome. That has haunted me ever since. Never in a million years would I do something like that to my darling boy and this is not a blog post about mercy killing or euthanasia*, but I guess I understand part of why he may have done it.

Faced with the prospect of my son spending years losing the ability to talk (which he mostly has done), to walk, to swallow; thinking of him having more pain as his joints degenerate; knowing that he may be hit by seizures and by the end may not even recognise his family… there have been times where I’m certain I could not go through that. Maybe that makes me selfish, putting my wishes foremost.

Or is it? Is it selfish to hope that your loved one, whether 7 or 70, can live without pain, physical or mental, and can die with dignity? The reason we have these thoughts is because we love them. And love makes us want to end any suffering.

As with anything I write in this blog these are my own thoughts and emotions and I’m simply offloading. I may be in a tiny minority but I’m going to feel better for having said it. My thoughts may change, as so many things I’ve written about have done. Maybe as his condition worsens I’ll be more and more desperate for him to cling onto life with both hands and never let go.

Right now, as I’m writing this, Pudding is clambering onto my lap with his tablet, resting his head heavy against my cheek, his warm bulk blocking my view of the screen and making it pretty awkward to type. I simply can’t imagine him not being here.

But I will always hope for the best for him. In life and in death.

Pudding in front of some greenery. He looks a little pensive or worried.

 

*I do happen to believe that an adult in their right mind with a life-limiting condition should have the choice to die at a time of their choosing, but know that this is a topic fraught with problems and presents a number of ethical issues.

 

Christmas contemplation

On By huntersmumIn family5 Comments

Christmas is one of those times of year when we often look back and see how life has changed. Sometimes for the better, sometimes worse.

Pudding in front of a large model polar bear.

I’ve been in a contemplative mood lately. Partly because of the memories that are turning up on Facebook at the moment: three years ago Pudding had just been undergoing testing for the clinical trial that he is now on. Having been through months of heartbreak after diagnosis, the trial brought all sorts of different emotions and worries – would be accepted into the trial? would it make a difference? how long before the treatment would be made widely available?

Three years seems like a lifetime ago now, and although I sometimes speak with other parents who are only just at the start of this MPS journey, it can be hard to remember, truly remember, what those first few months were like. The vagaries of the mind can be quite useful – protecting us from the worst horrors so we (mostly) don’t get stuck in the same loop for ever.

I know I’ve been through so many states of mind – despair, guilt, anger, hope, frustration – and they come and go in unexpected ways, spiralling through the months and years. Never linear, sometimes bursting back in when I think I’ve waved that one goodbye. I’ve come to realise that emotions don’t behave in the way I used to expect.

But lately one has still caught me by surprise and I don’t quite know how to label it. Content isn’t quite right as that implies I’m happy about the situation (I am often happy too but that’s a separate emotion) yet resignation is wrong because it’s too sad. I think the best I can use is acceptance.

I’ve talked before on the blog about accepting this new path, but I guess there is a difference between reluctant acceptance of something that we can’t change and this new feeling of calm deep inside. And that is despite, or possibly even because of, the fact that I do now think we will have to say goodbye to our gorgeous boy way before his time.That will always be something I would change in an instant if I could, and I know that any of those emotions can come back and thump me in an unexpected moment, but for now this is where I am.

All Around the World sticker book. Fold out scenes with 400 animal stickers.Oddly the thing that made me realise it was this book. I bought it five years ago, long before Pudding’s diagnosis and intended to give it to him when he’d grown up enough to be able to use it. Every year I have looked at it in my present drawer and known that time hadn’t come yet. He is nearly seven now, and I’m not sure he will ever reach the stage of being interested/able. And it’s time for it to go to someone else. Previously when I’ve given away a part of the life he will never lead, it has been almost a physical hurt. An arrow to the heart that says, ‘This wasn’t what you expected’. But this time? Acceptance with a smattering of fond nostalgia.

Actually, maybe I was wrong to throw out the word content earlier. I am happy that it will go to another deserving little boy. Content does have a place in this life alongside MPS, and I shouldn’t feel bad about that.

Since moving house, life does seem to have got onto a more even keel. And when I snuggle up on the sofa with my Pudding watching his wholehearted enjoyment of a film, or when Hubby tickles him and brings out his deep chuckle, or when he bounces in excitement with a snowball in each hand, that is what I feel. Deep, deep love and content.

On an end-note, I’d just like to say a thank you to each and every one of you for reading my emotional ramblings and following Pudding’s journey. Wishing you all a contented and loving Christmas!

Christmas presents

On By huntersmumIn family2 Comments

Since I started writing this post the end of November has been and gone. And what with house move and hospital trips (sorry to those not following us on Facebook, it’s all been on there!) I’m still feeling pretty unprepared for Christmas. Apart from one area that is.

I’m completely prepared with Pudding’s presents. And that’s because I’m not getting him any.

How dare you! Child abuse! Unnatural mother!

I did wonder if I could ‘fess up to this one as I know that some people will be horrified by the idea. But for me it’s just a natural progression in the path we’re taking towards accepting this new life and accepting Pudding for how he is.

I remember as a child how magical Christmas was. The building of excitement in the previous weeks. Lying awake for hours chatting with my sister on Christmas Eve. Parents and grandparents getting increasingly cross when they came in and told us to shut the **** up (only they put it a lot more politely). Waking up to find Dad’s old walking socks at the end of our bed had been stuffed full of presents in the night. Pattering downstairs to see acres more presents under the tree, but having to wait (oh, the awfulness of it) until everyone had breakfasted before we could open them. So many anticipated and much-awaited rituals.

Of course when I had children I looked forward to sharing that magic with my boys. T has of course got all that anticipation and excitement. And yes, I do get a certain satisfaction in making him wait to open the big presents! But Pudding? Well, as you’ve probably gathered by now that if someone lives in the moment to the extent that he does, there isn’t a huge amount of understanding of Christmas.

Pudding holding a wrapped present and smiling.We’ll do some Christmassy trips out in the next few weeks and I may post pictures of Pudding smiling at Santa Claus (why wouldn’t he? Pudding loves meeting people and getting attention. A big beardy man in a funny suit is no exception.) But if we didn’t do any of that he wouldn’t feel like he was missing out.

Last year I did buy him presents but didn’t wrap any of them because he’s never been interested in unwrapping any before. When he came downstairs in the morning he just wanted his breakfast and TV as usual. In all the excitement I even forgot to bring his bag of presents down and when I eventually showed it to him he dumped Hubby’s slippers on the top and ignored them.

I am gradually learning that many of the things that we carry on doing as parents are partly for ourselves, wanting him to enjoy the things that we have anticipated and expected ourselves. If we try to force Pudding into the mould of a ‘normal’ child it is stressful for him and stressful for us too. So we learn to adapt and cut out a new path for our family.

There is of course always the possibility that he will surprise us all and suddenly show an interest in the whole Christmas thing. In which case there will be some things under the tree from other people and we will adapt again. But one thing I can guarantee is that on Christmas Day he will enjoy himself with food and TV and cuddles and family. He might not be able to join in all the Christmas rituals but one that we will definitely enjoy with him is having an almighty game of indoor snowballs.

 

House move

On By huntersmumIn family6 Comments

I’ve mentioned this before in passing but not really said much as I don’t want to jinx it going through. But as it has sort of been taking over my life I guess it’s time to rectify that.

When I’ve mentioned the perils of moving to friends, a few people responded with the fact that moving house is meant to be one of the most stressful life events. I usually replied jokingly that diagnosis of a life-limiting illness tops that. But the reality is that the arrival of MPS into our lives has directly affected how stressful I’ve found these last few months.

Life is generally full of peaks and troughs of stress and emotion, but since Pudding’s diagnosis my underlying stress has been reset to a much higher level. While I can cope with the usual everyday stuff, anything extra on top of that has become so much harder to deal with.

The difficulty of keeping the house tidy for viewings (anyone with children will understand that special pain), the disappointment of the first two offers falling through, the endless forms and legal stuff have all taken their toll. And joy of joy, stress has blossomed into the new symptom of anxiety.

Mental health has become much less taboo to talk about but it still feels hard to admit how I’m finding it. Logically I can reason with myself that the sky won’t fall in if I can’t find a particular document, but yet every time I have a communication from the solicitor my body reacts. I now only have to see notification of a new email for my heart rate to go up and it becomes more difficult to breathe. Of course, 9 times out of 10 it’s something else entirely – a harvest festival letter from school or the latest sale on at my favourite shop. But each time, that anxiety builds and some days it is immobilising.

We are hopefully now getting to the end of the process and will be able to exchange contracts soon. And I am trying to focus on the positives. The house we going to has more room inside and out for Pudding to play in (and for T to escape from him when he’s hitting). We’ll have the potential for a downstairs bedroom if we need it. The cul-de-sac location means less chance of him being in danger if he escapes. And a detached house means that I need worry less about noise.

OLYMPUS DIGITAL CAMERABut still those fears nibble away at me. ‘It can all fall through at the last minute’. ‘You’ll have to start all over again’. At least one bonus about our current health concerns is that Pudding seems to have stopped getting much taller at the moment, so is less likely to grow out of his current bed and small room… Maybe another year in this house is possible. And I won’t yet have the wrench of leaving the house where both my boys were born. (Technically as we’re taking the rug with us I could still point and say “that’s where it happened”!) Though I’ve already had the tears when I painted over their height marks on the wall.

Cross fingers I’ll be able to share more positive news in the next few weeks and hopefully my emotions can get back to a more even keel. In the meantime, thank god for cuddles and fun with my little Chucklemonster every evening. There is a lot to be said for living in the moment!OLYMPUS DIGITAL CAMERA

Sorry, this post has been a bit of an emotion dump, but do you know what? I’ll probably feel better for having written it, so no apologies to anyone who has had to read it!

 

Wheelchair

On By huntersmumIn familyLeave a comment

Gosh it’s been a while since a blogpost, hasn’t it? Loads of potential updates going round in my head, but what with house-moving stresses and other stuff, none of them are making it into print! So I’m making an effort today.

A few months back I had the decision of whether to replace Pudding’s special needs buggy with something similar or to go with a wheelchair this time. As well as the buggy becoming harder and harder to push given how worn-down the wheels were, the appointment was triggered by my worries about his safety. When he got cross (who’d think it of that gorgeous smiling face?!) he would push down on the footplate, arching his back and being in real danger of tipping the whole thing over backwards.

OLYMPUS DIGITAL CAMERAWe did talk about various options to stop this happening, but also there was the knowledge that he wasn’t getting any smaller and would eventually outgrow the buggy anyway. The physiotherapist got a wheelchair out for him to try and his little face when he climbed into it… Well, I knew that it was the right thing!

We’ve had the chair for just over a month now, and I’m happy to report that I still think it was the right decision. It has changed our lives in a number of ways – some expected, and some not so much.

I had got into the habit of driving more often than I’d like as it was such an effort going any distance with the buggy. The wheelchair though is a dream in comparison. I can even push and steer one-handed! I do have to be better at remembering to put the brakes on – without them it does want to head off independently down even the slightest of slopes. (And no, we have not crashed yet…)

 

parkingThe accessibility (or not) of the built environment has become much more obvious to me. The little wheels at the front of the chair make it a bit harder to negotiate small obstacles than with the buggy. (Drivers please note: dropped kerbs are there to make it possible for wheelchair users to get around – if you park over them it might save you 30 seconds but take someone else far longer to find a different route). And I never knew that some surfaces are near impossible to get across. My unfavourite so far is this sort of surface used around the accessible parking bays in a place near us.

One thing I hadn’t realised is how much heavier it would be, so I’m eternally grateful for the friend who helped us find our new car earlier this year. He chose one with no lip on the boot which makes it possible for me to lift it in myself without too much damage to my back. One of those solutions that lifts the wheelchair onto the roof of your car would be absolutely fabulous, but at around two thousand pounds not really affordable.

It does feel easier to use our Blue Badge card. Previously I always worried that our right to park in the disabled bay would be challenged as there have been instances where those with invisible disabilities have been on the receiving end of horrible comments. With a wheelchair we ‘fit’ people’s expectations of disability more.

Attitudes towards us when we’re out and about are also quite different now. The first time I caught a bus with Pudding in his new chair was a marked change. The bus driver stopped at a slightly better place, got the ramp out and asked if we had a disabled travel pass. Not all travel is that easy when disabilities are added into the mix and perhaps we just hit lucky with an excellent driver, but we certainly never had as attentive service when he was in the buggy.

I had expected to receive a bit more understanding from adults  – seeing a wheelchair automatically signals more of a difference than a buggy – it prepares people to accept that the wheelchair user/carer may need more help and support. And if Pudding is being particularly loud I hope that he won’t be dismissed as ‘out of control’ as much. But I guess one thing I wasn’t prepared for was how many more stares we get from other children. They see buggies all the time of course, but a wheelchair is outside their daily experience.

I may just have to grow a thicker hide again, but of course Pudding couldn’t care less. In the chair he seems very happy – he is more upright and therefore more actively involved in his environment. It’s the perfect height for most cafe tables meaning that he can join us more easily. And he can climb in and out all by himself so gets the added pride of being more independent.

We’re wheely happy!

His eyes

On By huntersmumIn hospital8 Comments

It’s been a long day at hospital.

My back is aching and I am so tired. I go to bed but cannot sleep. When I turn out the light and lie down all I can see is his eyes. Red-rimmed and full of tears they look into mine and beg me to make it stop.

It was just a routine trip really. Our usual monthly trip to Manchester Children’s hospital for the clinical trial that Pudding is on. T came with us too as he really wanted to see where his brother has been coming for 3 years now. But as those who follow us on Facebook will know, we’ve been having a few problems with Pudding’s IV port – the one which we use for his weekly treatments. Towards the end of the day, we went down to Radiology to try and get a lineogram.

Pudding was already tired and we ended up having to wait far longer than we expected. I knew it wouldn’t be easy. He was hitting out in the waiting room. Shouting and hard to distract. He fought us as we got him on the X-ray table. We needed him to be still so we could get a clear picture but of course he can’t know this. He doesn’t understand.

So often his behaviour is physical  – being non-verbal he can’t tell us what he wants. He can take my hand and lead me to the kitchen cupboard to ask me for food. He can hand me his tablet to ask it to be turned on. He can throw things until I notice that his programme on TV has finished and needs to be turned over.

But as I stood at his head and pinned his arms down, he looked at me with those heartbreaking eyes. And I knew exactly what he wanted. It didn’t matter that he can’t talk. It didn’t matter that he has a severe learning difficulty. Clear as anything, he was saying ‘I don’t want to be here’. Speaking to my soul and begging me to help. And I held him down.

The lineogram couldn’t show anything anyway. In the time since it had been accessed the needle had come out of place. So we have to try again in two days time. He is now fast asleep, lying peaceful and unconcerned by anything. And I’m left here wondering what it will be like next time. Will he be in a better mood and will it all go swimmingly. Will he see the room and start fighting again? Will I need to look into those eyes again and tell him it will all be alright? Will I do my best to calm him when I’m close to tears myself?

At times like this all I want to do is whisk him away. Get him miles away from needles and x-rays and monitors and all the shitty implications of a medical life. Say goodbye to the hospitals. Live life in the moment and not think of the future. He should be in a field somewhere – kicking a ball, stroking a bunny, throwing stones in a river.

How can I ever know what is best for him? He’ll never be able to tell me whether I got it right. When the moment is past he doesn’t hold it against me.

But those eyes stay with me…

eyes

Can I love MPS?

On By huntersmumIn family16 Comments

The other day I watched my eldest, T, shooting zombies on a computer game and telling me enthusiastically about the gun he’d just got (ON THE GAME!) and how machine guns were the BEST. I sighed and wondered why with all the amazing toys and books we have around, it is simulated violence that wins out.

And then I had a bit of an epiphany.

His brother, Pudding, may laugh at cartoon violence but he will never get involved in blood-thirsty shoot-outs.

I read a lot of blogs about other disabilities and one of the discussions that I find both fascinating and thought-provoking is differing views of autism. Parents of children with autism often struggle to adjust to this different world and use strongly emotive language about it. Whereas adults with autism will point out that autism is a part of them and to say you hate autism is to say you hate them.

That discussion has often made me think about how I refer to MPS – I’ve frequently said I hate it and wonder what adults with the same condition would say about this. The trouble is, I guess, that when I write I often use MPS as short hand for ‘Mucopolysaccharidosis Type II (Hunter Syndrome) – the severe version’. It’s just simpler to write. And whilst there are adults with other types of MPS or the attenuated (milder) end of Hunter Syndrome, there are NO adults still living with severe Hunter Syndrome for me to ask.

If my son was diagnosed with cancer or caught a life-threatening illness, that would be less complicated – I could rail against that to my heart’s content. But MPS? Without MPS he would be a completely different boy. How can I hate something that is a part of him? And yet, how can I not hate something that will take him from me before he becomes an adult?

And yet, and yet, and yet. There are bonuses to having my boy with MPS. The lack of interest in violent computer games is just one of many.

He may never tell me he loves me but he will also never scream ‘I hate you!’ in the heat of an argument.

Pudding aged 3He may not ever find ‘the one’ special person in his life. But to him, everyone is special.

He will never get drunk and fall in through the door at 2am.

He may not join in nursery rhymes but he will also never disturb the whole street by playing thumpingly loud music.

He will never judge anyone based on their race, religion, gender or any other construct of society.

He will always need help with things but will never look at me with contempt because I can’t manage the settings on my phone.

He will never demand the latest toy craze because ‘everyone else has one’.

His uncomplicated joy in life is contagious.

And he may attract stares sometimes but he will also continue to bring many wonderful people into our lives.

There will always be the health aspects of MPS that I rail against and if I had a magic wand I would cure him in an instant. But there are things that I can celebrate about MPS as well. My emotions and thoughts around this topic will probably yo-yo though the months and years depending on what is happening around us. (I think another blog post is forming in my head about separating out the different aspects of health/disabilities and what it is that actually bothers me.)

But the one thing that will never change is that Pudding is my gorgeous boy and I love him with all my heart.

Speech

On By huntersmumIn medical8 Comments

‘He still can’t talk!’

It was just a comment from a six-year-old outside Pudding’s school. Honest surprise that in the term since my little boy had left mainstream his speech hadn’t miraculously improved.

What that child didn’t know is that his words made me cry. It had been a pretty rubbish day for a variety of reasons so I guess his comment affected me more than it would normally.

But the hard truth is that Pudding says far less than he used to.

Speech and language therapy (SLT) was the first intervention that we had, starting when he was two years eight months, even before he was diagnosed. I had heard all the usual comments –  ‘Mine didn’t talk until he was three’, ‘He’ll probably start speaking in full sentences’ – but I knew that something wasn’t right. It wasn’t just that Pudding didn’t speak, but it was his lack of understanding too.

Early SLT sessions started working on trying to encourage two words being put together. Not just ‘More!’ but ‘More apple’ or ‘More juice’. We never got anywhere with that one!

Slowly though, his understanding of instructions improved and his vocabulary climbed to over 50 words. He even managed to work on his own sentences – in 2015 we were over the moon when he came out with ‘Where de moo?’ as the pantomime cow went backstage. Getting on the trial (which should in theory halt any deterioration in the brain) I thought that his language may continue to improve though I never hoped for any miracles.

In the last year or so I have lost that hope. Slowly, so slowly that we barely noticed, many of his words have been lost. He still chats away in his own language but recognisable words are fewer (with the exception of some random outliers – ‘Des a Bunny!’ shouted at top volume is a joy to hear).

Pudding wearing a crown of flowers and grass.

At the end of term we of course got a report from his new school and it was a lovely read. Apart from one sentence that suggested a target for him would be to use ‘Yes’ in appropriate situations. He actually did say ‘yes’ even before ‘no’ appeared (an early sign that he wasn’t an entirely normal child!) and continued to use it really well. Yet now, ‘no’ is often used for both.

He used to melt hearts with his enthusiastic ‘Dank Kyou!’ but he doesn’t say it anymore.

He used to shout ‘Duck!’ when Sarah and Duck came on TV.

I’m not even sure when I last heard ‘Mummy’.

I have come a long way with acceptance in the last year. It used to be that when I saw a young child chatting away to their Mum my heart would sink as I wished that I could have that with my Pudding. I know now that that will never happen. And the other week I was so proud of myself for feeling nothing but simple enjoyment as I overheard a conversation on the bus where a lady was answering every question under the sun from her inquisitive two-year-old. I marvelled that it didn’t hurt as it always had.

I can be content with my Pudding as he is, but I don’t want to lose any more of him. After the latest positive hearing test, I can’t stick my head in the sand and put his lack of speech down to hearing loss. It may still not be the start of the long slow Hunter Syndrome decline, but I have to face the possibility that it could be.

And that is a scary thought.

Football

On By huntersmumIn familyLeave a comment

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.