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.

 

 

What do others see?

As I watch some children of my acquaintance grow up into teenagers, I see them hit that squirming self-conscious don’t-notice-me phase. I remember it so well. Some adolescents breeze through it and enter adulthood with barely a glance back. Others, like me, never seem to shake it off.

I’ve spent much of my life worrying about what others think of me. (Thanks very much to the bullies at school who shook my self-confidence so thoroughly.) Will people still like me if I say this? What do I look like in that? Etc, etc.

Sensitivity to what other people think got heightened when Pudding’s development delay first started becoming obvious. Any trip out the house became fraught with new worries. What did people see when they looked at him? At me?

A helicopter mother, hovering over her child as he climbed the steps, not giving him the space to do it himself? They could have no idea that his balance wasn’t great and that he had a permanent bump on his forehead from the number of times he had fallen.

Someone who is not concentrating on the conversation going on around her? Even when I let Pudding stray a bit further away from me I’m always watching – aware that at any moment he could hit another child or make a dash for the gate.

A lax parent? If they do see Pudding hitting out or running away they might think I should do more to discipline him. But often when I do tell him off it’s more for the benefit of others. ‘Bad’ behaviour in Pudding is often impulse and no amount of discipline will make a difference.

Too stand-offish? Seeing me standing by myself amongst groups of sociable parents, they could think ‘up herself’. Yet all my thoughts were on the latest clinical results, or concentrating hard on not crying on the school run.

Uncaring? A stranger on the train seeing me scrolling through my phone while Pudding is stuck in his chair watching his tablet and shouting out might expect me to do more to entertain him or keep him quiet. But they would never know that while their journey is briefly disturbed, this is yet another necessary journey to hospital and a film is the only way to keep him calm.

Pudding and me running along track through green spaceIt now happens less and less as I’ve developed a thicker skin on this journey (though I still hate the train situation!). It’s brought out my sarcastic side at times. In the supermarket recently I did say loudly to Pudding, ‘Don’t shout like that or people might stare!’ As we were leaving T very astutely said to me, ‘People were staring anyway, Mummy.’ Not after I said that, they didn’t!

Of course the vast majority of people probably don’t even give us a second thought, let alone think something negative. But my worries about people’s opinions will always be with me at some level, and those who sneer at Pudding or look askance at me will always hurt. But I know that most important are the opinions of those who are close to us. Those who know and love us for who we are. The nurses and play specialist who snuggle with him and insist on me taking a break. Friends who invite us out despite us not having made it out on the previous twenty-three occasions. Family who are always there for us.

 

Life and Death

*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

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

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

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

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!