Category: family

Not to you

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Many times I have laid in bed listening to your nightly party time, and cursing you for my lack of sleep. Last night though I loved hearing your surprised little ‘oh’s and cackles of laughter, the shouts of ‘wha da?’ from your dark room. You see, just before I’d been watching TV and seen a hearse with a child’s coffin in it and a name spelt out in flowers. Your name.

I should have expected it, the storyline was obvious. But I didn’t expect that visceral punch to the emotions and it left me sobbing on your Daddy’s chest. When I went up to bed and closed my eyes I kept seeing it still. But your laughter wound its way around my heart and soothed my fears. Every shout and giggle sang out that this is a boy who is joyfully and wonderfully alive.

Pudding peering around a tree with a huge cheeky grin.Since Christmas I don’t think I’ve been the best mother for you. I’ve spent too long stuck in a darker place than I’d like to be. I’ve been too easily frustrated by you and your brother, and have been finding it difficult to accept life as it is now as opposed to the life I expected. Things have been turned around lately though; Martin House and the MPS Conference gave us a bit of respite, and counselling has been helping me to look at things a little differently.

I lay there and thought of that coffin and your name in flowers, and instead of falling back into the dark place I vowed that it.. Will. Not. Happen. Not to you. Not as long as I can help it.

It’s not fair that a simple mistake in your DNA has dealt you this hand. It’s not fair that it is so costly to develop drugs for conditions as rare as yours. It’s not fair that decisions have to be made on which patients are ‘worth’ saving. It’s not fair that there are parents out there having hope ripped away from them as another trial drug is withdrawn.

It is all too easy to be swamped by all these obstacles in your way. I’m not a natural campaigner – I’m too shy and introverted for that. But, my gorgeous trouble, I promise I will do what I can for you. I will fight for you.

You are most definitely worth it.

Raining in my heart

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Like many parents, I’ve seen Frozen many many times, and to misquote one of Anna’s early lines, ‘The sky’s crying, so I’m crying’.

Some days everything just seems too much. Raindrops on a window.Today has been one of those days. Whether it’s tiredness from the long hospital day yesterday and a night listening to Pudding shouting from his bedroom. Whether it’s the miserable weather or facing the future at a meeting with school today. Whatever it is or isn’t, I always seem to do what I need to for organising Pudding’s appointments and so on. But there are days when the thought of my committee duties or tackling a form of my own that is two weeks overdue and is still sitting on my kitchen surface sends me into a spin of anxiety. Even theatre tickets booked for tonight for a show that I’ve been looking forward to wasn’t enough to lift my mood.

After lunch I went up to bed to try and nap but found myself crying instead. Not the neat tears-running-down-cheeks sort of crying, but full-on body-wracking sobs and wails that left me unable to breathe through the snot. Not pretty but I think it needed to be done.

I won’t say it made all right with the world again, because it blatantly did not, but it’s maybe a bit more manageable. And maybe I will tackle those forms tomorrow.

Afterwards I had a bath and a sneaky chocolate and continued reading How To Build a Girl, by Caitlin Moran. In it her 14-year-old protagonist describes anxiety brilliantly as ‘boiling in this quicksilver, electrocised soup’ but says ‘It’s really best not to tell people when you feel bad. Growing up is about keeping secrets and pretending everything is fine.’

I used to think a bit like that.

A while back I wrote about the ‘failure’ of crying all over our healthcare nurse and another MPS mum picked me up on it, saying it’s not a failure to have those emotions. She was right of course and the logical part of me knew that, but at the time, when I was tied up inside them that’s how I felt. Today I know that’s not true. I will have good days and I will have bad days, and I will carry on through them.

I’m not writing this post to garner sympathy or be told I’m inspiring. I’m writing because I’m not alone. All over the country there are people like me – parents dealing with a child’s diagnosis, people who have lost a loved one, students who are struggling with exam pressure, people who wonder how they can get through whatever difficulties they have been hit with. And if we keep secrets, pretend we’re fine and never tell anyone how we’re feeling how can things get better?

A blog post I read earlier today reminded me that being emotional can be seen as a weakness and used as a derogatory term to lessen others. But surely, being emotional simply makes us human. And human is good.

Later: The not crying didn’t quite last the school pick-up. Unsurprisingly after a long day yesterday Pudding was also tired and grumpy and had thrown a block at another child. And then T brought home this picture of his ‘special place’ – he had chosen Martin House and his reason definitely made my eyes leak again. (‘it reminds me of Pudding and it reminds me that he is unlikely to die of his disease’)A child's drawing of Martin House Hospice with the caption 'My special place is...'

Paradise

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I have a neck!

(How stupid does that sound? Nearly 46 years on this planet and she’s only just realised…)

The truth is I’ve been walking around since Monday morning like a swan with an elegant long neck rising effortlessly out from my shoulders. I had forgotten what feeling truly relaxed is like. The norm for me had become anxiety and stress, both emotional and physical – pushing the buggy, coercing a reluctant child up the stairs, carrying the heavy weight of an MPS diagnosis and all that it entails.

So what has changed? The paradise on earth that is Martin House Children’s Hospice.

When Pudding was first diagnosed, several people mentioned Martin House to me, but I pushed that idea away as fast and far as I could. To me, a hospice meant dying children and that was something I did not want to think about. Even when it was explained to me that many families go there for respite rather than end of life care, there was a barrier that I just couldn’t cross; it was one more thing on the path to acceptance of a life-limiting condition.

Earlier this year though, I was finally ready to take that step and got in touch. We went for a first look round in May, and ever since T has been asking ‘When are we going back to Martin House?’

Hubby looking out from a balcony at the grounds of Martin House at several rabbits on the lawnIt’s hard to describe what a special place it is. Sitting here I’m stuck for words. But I can close my eyes and see… Rabbits on the lawn. Jars full of cake. Paths that twist and turn through peaceful gardens. Communal tables set out for dinner. A rainbow of children’s faces on the wall. A bench in the sunlight. And I can hear shrieks of delight from T as he plays in the water with other siblings.  Birdsong. The patter of Pudding’s feet when he takes a break from TV to run to me for a cuddle.

A carer is allocated to each of the children to give parents a break from the constant monitoring of vital signs or medications. In our case, it was freedom from the need to be on constant high alert. It’s only when we got a break from that – a proper break, not just a few hours while he’s at school or asleep – that I realised just how wearing it is.

It was odd at first to let go. After all it’s second nature for me to jump out of my chair to follow him when he runs. I constantly assess his mood to second guess whether he’s about to hit anyone or throw something. But for the whole weekend someone else was there to do that. They even sat with him at meal-times so we could eat our food without having to persuade him to eat or stop him from cramming too much in.

A path winding through some trees and under a pergola. Hospice buildings in the background.So I sat in the sunshine and read a book, played with T and the other siblings, and chatted to other parents. I was so relaxed I barely took any pictures.

As I expected, we saw the difficult stuff too. At least one of the children staying didn’t have much longer in this world. And while we there a group of bereaved siblings were having a get-together. But the atmosphere is definitely not a sad one. It’s a welcome and warmth. The feeling of being well looked after and peace. A little slice of paradise. A weekend that meant more to us than I thought any holiday could.

As we drove away on Monday morning back to normal life, T asked ‘When are we going back?’

As soon as possible please….!

(Martin House survives on the kindness of volunteers and donations. If you would like to contribute to their wonderful support of families dealing with a life-limiting condition, you can do so here.)

Kindness

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So you may have gathered that the last few weeks haven’t been the easiest – sickness bugs, half term, surgery, virtual house arrest after surgery (and don’t even mention politics!). But I’ve been carried through by the kindness of … well, almost everyone.

Of course, there will always be the exceptions, the ones who judge or who don’t make the effort to consider that not all children come from the same mould. We had one of those in half term when we visited a cathedral. I approached the information desk to ask for the disabled exit (because yes, Pudding was not happy, and yes, he was making sure everyone knew about it). The lady turned round from a conversation with a smile that didn’t reach her eyes and told him to ‘Shush. Please!’ before waving us to a lift which wasn’t what we wanted.

But I won’t waste my ire on people like her. This post is about the good ones, the people who show their kindness through everyday actions. Like the other staff there who went out of their way to try and engage Pudding in activities despite his difficult behaviour. Maybe a job to them but welcome inclusion to me.

The very next day the boys and I were in the playground at a stately home. After spending ten minutes trying to escape, of course Pudding didn’t want to leave when the transport came. When he decides against something it is becoming more and more difficult for me to manage him physically. He is now half my weight and very strong. I was rescued by a complete stranger who offered to take the buggy while I persuaded /coerced Pudding to move. Such a little thing for someone to do, but such a help to me.

Pudding in a check shirt frowning slightly at the camera.We met another friend there and while we followed a trail around the gardens, she said to me, ‘I’ll push the buggy for a bit’. Such a little thing for someone to do, but a welcome rest for me. (He’s heavy!)

One of the added problems about Pudding’s appointments in Manchester is having to work out what happens with T while we’re away. The day of surgery, a friend offered to pick him up from school, take him to the earlier gym class her son goes to, and then wait around until T’s class had finished. Yet another friend picked him up from school the next day and held onto him for an extra hour when we were delayed getting back. A short(ish) time for them, but a release from worry for me.

MPS has brought us so many trials and tribulations, and a world that I wish I had never heard about. But it has also brought the ability to see a side of people that I might not really have been aware of otherwise. My everyday heroes. Not just family or long-term friends who are bound to us with ties of blood and years of shared experience, but people who’ve got to know us since Pudding’s diagnosis and who haven’t run a mile at the sight of an unconventional set-up. Not forgetting the kindness of strangers.

Kindness matters. It really does make a difference. Next time you see someone struggling and wonder whether you should intervene, just offer that help. It might be a small inconvenience to you, but could mean the world to them.

Sleep (again)

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So, any regular readers will have been waiting on tenterhooks for an update on how Pudding’s move to his own room went and whether we’re getting any sleep. Or, more likely, will have completely forgotten about it….

After a massive clear-out of the office (which has now taken over our bedroom), Pudding moved in just before Christmas. The change didn’t seem to phase him at all, though I discovered that with his door directly opposite ours he sounded even louder at night. We waited until after Christmas though to take the cot sides off, and I am very glad we did.

When T graduated from the cot we did all the usual things. We chose new bedding, we talked about how he was going to be in a ‘big boy bed’ now he was growing up. It was an exciting time. But with Pudding it was different, as of course everything is.

When a child has communication problems and little understanding it is far more difficult to prepare for a change. I had no idea whether he would take it in his stride or whether it would throw him completely. Turns out it was the latter.

I suppose that having been in a cot for almost 5 years, apart from a few nights in a hotel room with me, it was quite a reassuring space. To suddenly have that security taken away rocked his world. He understood straight away that he could climb out of bed, and he did, finding it far more distressing that he was going to be left in the room by himself.

Every so often, like when we have the hour change in spring or autumn, he has found it more difficult to settle at night. At those times we’ve simply had to stay in with him until he fell asleep, only for a few nights, and I expected this time to be the same. It was a much slower process though: sitting by the bed with him on my knee to read stories, turning the light out, persuading him to get into bed, staying close by and talking or singing until he was fast asleep. Time consuming but totally worth it to save him from as much stress as possible. Gradually, gradually this has changed and I can now get him into bed, look at a book, turn the light off and go straight out. (On nights when it is Hubby’s turn, Pudding still has him wrapped firmly around his little finger though!) Dropping nap-time completely has helped too – he often can’t keep his eyes open much past six thirty now.

His distress was of course tough to deal with. What mother enjoys seeing their child in tears? However the worst aspect was that it brought on a period of separation anxiety at the start of the school term. Whilst previously Pudding had run in laughing to give his TA a hug, all of a sudden he was clinging to me and crying. This I found very hard and was one of the contributing factors to my low mood last month. But again, with the help of his TA (who became very good at pretending to hide from him) we’ve got through it and out the other side.

Strangely enough, the thing I was most worried about – him getting out of bed at night – hasn’t happened at all. As long as it’s still dark, he has stayed in bed for his nightly partying. We’re not taking any chances of course; he has a very stiff door with a stair-gate on the outside of it.

I’m just not looking forward to those summer mornings when it starts getting light really early…  Knock, knock, knock. ‘Mum-meee! Muuuuum-mee!’

 

 

KEEN

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I don’t often think about my time at university. Hey, it was so long ago now that I can barely remember it anyway! Yet recently something has happened to take me back.

Oxford twenty-five years ago. At Freshers Fair I came across a stall for KEEN – a student-run organisation that put on sporting and other activities for disabled children (athletes). I thought it sounded like a ‘good thing’ to do and signed up. I was pretty nervous at the first session I went to. After all, what did I know about interacting with disabled people – I was petrified about coming across as patronising to those with physical problems and worried that I wouldn’t understand those with learning difficulties. I thought the parents would be watching me and judging me badly. I have to admit that nervousness never really went away. I kept on volunteering and even ended up on the committee. In the sessions though I tended to gravitate towards working with the more able athletes.

The format  designed by KEEN Oxford has spread to a few other places and we’re not far from one of them. Little did I realise all that time ago that I would end up taking my own child to sessions run by this fantastic organisation.

The boys and I went for the first time a few weeks ago. We were the first to turn up so arrived in a room full of students all ready to welcome us. Once Pudding had established that there were lots of balls and people willing to play with him, he was of course in seventh heaven. T too loved the attention, and was happy to beat a student at football by 40 goals to 3. Squeaky flashing balls with the lights turned off was even better.

Two happy worn-out boys, two rested parents, no TV for at least half an afternoon. A definite win all round.

I don’t know if any of the student helpers have the same hang-ups as I did, but watching them I only see enthusiastic youngsters full of energy, with so much to offer these kids. And oh, I am grateful for that!

 

My Valentine

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Last year in February, the month of love, I wrote a post and quoted a Wet Wet Wet song ‘Love is all around me’. I read it again recently and I’ll be honest, I had a lump in my throat.

The love and support I’ve had from those around me have made so much difference since Pudding’s diagnosis. Without those family, friends and professionals who care for us in a variety of ways, I’m not sure I could have coped. (There are still times I don’t cope so well but that’s another story.)

This year I’ve been thinking more about the contrasts of love. Leaving Hubby out of it, the two great loves of my life are my boys. (Oh, and chocolate, mustn’t forget chocolate.) Yet, the love I feel them is not the same.

I look at T with pride and awe at his imagination, his bright mind and classic looks. I marvel at his growing independence and get so much enjoyment at sharing my old favourites and new experiences with him. My heart swells and I think it can’t be possible to love anyone as much as this.

And then I turn to Pudding who has MPS written all over his face and I melt all over again. Yes, I feel pride at every little achievement he makes, steps that would be easy for most other children but that are hard won for him. But my love for him is both softer and fiercer. I want to wrap him in my arms and protect him from the world. His chuckle can turn around a grey day and an unexpected kiss from him is worth a million dollars.

Sometimes after making me angry T has told me I love his brother more than him, and maybe other people think that is the case too. I don’t think it’s true – yes, I lose my temper with T and in the heat of the moment may not always like him. But I still love him. And with Pudding my feelings can be just as complicated by irritation and fear and sometimes boredom. My love for them is never in question – equal but vastly different. And when I catch them for a brief moment snuggled side by side on the sofa my world is complete. To quote this time from a musical I love – Blood Brothers – ‘They’re a pair, they go together.’

So, two Valentines this year for me. Well, ok Hubby, maybe three…

 

Mummy Times Two

What’s on your mind?

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For a while now there’s been one question that I’ve wanted to know the answer to more than anything. More even than the ‘What does the future hold?’ question, which I have sort of accepted that I will never know. The question is ‘What goes on in Pudding’s head?’

I live with him and love him. I know loads about him. I know that he loves watching Octonauts or Sarah and Duck. That he has a mean left kick in football. I know (mostly) what foods he will or won’t eat. I know (usually) when he’s about to hit me or throw something.

But I never really know what he is thinking. Because he can’t tell me.

When chuckles suddenly erupt from his round belly for no reason that I can fathom, what has started them? Has he seen something that tickles his sense of humour, or is he remembering something funny? Or, is it another new symptom to worry about? (Gelastic seizures, which cause a sudden bout of laughing or crying, are another thing I’d never heard about before Pudding’s diagnosis with MPS. Unlikely at this stage, but that doesn’t stop me running the possibilities through my head.)

When he is chatting in his bed alone at night in the pitch black, who is he talking to and what is he saying? I’d love to be able to join in sometimes as it sounds like a lot of fun.

When he asks for ‘Beebies’ for the twentieth time in a row with that beautiful hopeful smile, does he expect the answer to be different to the previous 19 times?

He does sometimes show problem-solving skills such as coming to find me when he needed a milk spillage cleared up, or getting a stool when he wants to reach something. So I know that he can identify a problem and find a solution.

I’ve often wondered how much he recognises people that we don’t meet very often and remembers things we’ve done with them. He’s so happy to see anyone and gives smiles and cuddles out freely regardless of whether he knows them! But I had an insight when we met his cousin’s cousins recently after a gap of only three weeks. The first time we saw them was in a restaurant and we whiled away the wait for food by playing one of his favourite games. It’s very simple – we point at each other and say ‘You!’ then someone replies ‘Me? No, you!’ (Really, don’t ask. Don’t all families do weird stuff like this?) Well, the second time we met up, as soon as the little girl peeped around the corner, Pudding pointed at her and shouted ‘You!’ Not his usual greeting, so I’m sure he remembered the time before.

Unless his language makes a huge leap forward, I probably never will have much idea of what he’s thinking about aside from the basics. I wonder what he would have been capable of, had his brain not been gradually clogged up with waste sugars for the first four years of his life. One thing I can be sure of though – there’s more that goes on in that curly head than I will ever really be aware of.

Birthday planning

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I find it hard to believe that my little Pudding will be 5 years old soon.

When your child has additional needs, birthdays can sometimes be a stark reminder of milestones missed. This year though, it’s a new challenge that is facing me. The birthday party!

Last year he had only just had an operation to fit a portacath into his spinal canal, so we didn’t do much for his birthday. So this time it will be his first proper birthday party.

First decision was where to hold it. Pudding has been to a few parties recently in a hall with an entertainer or bouncy castle.  Whilst he has enjoyed himself at these events it’s been in an ‘excited by the general atmosphere and balloons’ way rather than in joining in with his peers. I want his party to be one where he can take part on his own terms, so I’ve gone for one of the local soft play places.

These are definitely not my idea of fun, but kids seem to love them. This one is relatively small, so Pudding won’t be left behind while more able kids enjoy the bigger equipment. And I’ve been able to book exclusive use, so I don’t have to worry about him throwing things at complete strangers – his friends will be pretty used to his ways so I’ll worry less about them!

Guest list was next. Being minimally verbal he can’t tell me who he wants there. Of course there are some obvious candidates – Niece is top of the list, and I’ve got to know some of the children in Pudding’s class who seek him out. His TA has helped me out with a list of other children he plays with regularly.

And last issue on my list is presents. I’d hate to be one of those parents who nit-pick and insist on a gift list for their little darling. But when it comes down to it, there are only certain things that will be suitable for Pudding. Many of the toys that other children might receive would either be thrown at us, sit on a shelf for years or be adopted by T instead. So I agonised for a while, and then included this with the invites:

As many of you will know already, P is a bit of a character! Most presents for a five year old are not really appropriate and even I have problems buying for him. If, instead of a present, you would like to make a donation to a relevant charity that would be fantastic. We suggest the MPS Society (http://www.mpssociety.org.uk/) or the children’s hospice Martin House (http://www.martinhouse.org.uk/). If you’d rather not do that, please feel free to ask me for gift ideas. But most importantly don’t feel like you need to do either! He’ll have an absolute ball at the party and playing with his friends will be the only thing that matters to him.

Hopefully I won’t offend anyone with that! Sorted. Now all I have to do is decide on the theme for this year’s cake.

And the best thing of all? When I took him into school yesterday, one little boy came and asked me how to sign ‘Happy Birthday’ in Makaton because he wanted to say it to Pudding. I could have literally melted on the spot. Instead I had to admit that I didn’t know – but I’ve learnt it now!

Clearing out

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Ah, the post-Christmas clear out!

Finding space for all those new toys often means a ruthless look at the old ones and the filling up of various charity bags. Added to that, moving Pudding into his own room has given the perfect opportunity for some reorganisation and de-cluttering.

Reaching under T’s bed to pull out what was stored under there I nearly choked on a few year’s worth of dust. (Think I might have mentioned my lacksadaisical approach to cleaning before?) I hauled out the musical instruments to put on Pudding’s shelves. The kitchen play sets would still get plenty of use. Building blocks and dressing up fitted nicely under Pudding’s bed.

IMG_7296And then I stopped, confronted by two boxes of jigsaws and  first readers’ books. T grew out of them a while back, so a few years ago I packed them ready to pull out when they were needed again. There they have stayed. I’ve come across them lurking there since and pushed them back again knowing that their time was still not here.

I wonder now whether their time WILL ever come. Will he ever be able to do a 50 piece jigsaw or learn to read? I don’t know.

The brain is a wonderful thing. People with significant brain injuries can learn to walk again, or talk, or any number of amazing achievements. Yet there are individuals who are fully functioning in all other respects but never learn to recognise faces. I found the neuroscience module I did during my degree absolutely fascinating, but if there’s one thing I learnt it’s that there is so much we don’t understand. Perhaps this treatment will clear his brain of waste products. Perhaps he will learn and progress more. But perhaps he won’t. It may be that he will always remain a two or three year old cognitively. I can look at others with the same condition who are also on the trial but I just don’t know.

I’ve lent some books and jigsaws to friends who can make better use of them and I’d love to get rid of the lot. But I won’t. Because that would be giving in and limiting our expectations of Pudding. He’s surprised me with so many things already, so I have to hope that he will again. And if he doesn’t? Well, I never really liked Biff, Chip and Kipper anyway…