Service Station

On By huntersmumIn family4 Comments

Service stations are so easy, aren’t they? You pull off the motorway, park up, and pop in for a quick loo-stop or a cup of coffee.

Well that’s how it’s supposed to work anyway. But not if you’re in a car by yourself with Pudding. On our frequent trips to Manchester I try my hardest to avoid stopping and usually arrive absolutely bursting for a wee.

On my last trip I decided I couldn’t wait so stopped half-way. As I drove in, I ran through the options in my mind. I could get the buggy out, but that would take a while to unfold and he’d be cross at going from car to buggy and back to car without any freedom. Or I could leave the buggy in the boot and take the risk of going freestyle.

Luckily there was a parent and child space close to the entrance. (Between a couple who had just parked and were sauntering in, and a lady sitting drinking her coffee before pulling away. Don’t get me started on people without children who park in these spaces!). So I decided go for the risky option, and held tightly onto Pudding’s wrist as we crossed the road.

Pudding smiling up at camera before climbing into the car seat.

I played an enthusiastic chase and tickle game to get to the toilet quickly and chose a cubicle at the far end. Pudding wasn’t keen on going in but we squeezed round the door together. He is getting pretty good at undoing bolts but dumping the bag by the door and jamming my foot against it meant I wasn’t exposed to the public while doing my business.

Washing hands while also trying to hold onto a determined escapee is fairly impossible but the minimum requirements of hygiene were achieved by distracting him with the paper towels.

Luckily he didn’t need a nappy change himself as that would be a whole other problem. More service stations are now including Changing Places but they are still few and far between.

And then he was off. In the wrong direction. As usual I tried to make returning to the car sound really exciting. As usual he drew a few stares while lying down on the floor in answer to that.

Next he made a dash into WHSmith and this is where the whole buggy-free risk paid off. He stood in front of the huge cabinet of drinks and said, ‘Oh Wow!’ (For full Pudding-effect, try saying this in a similar voice to Wall-E). He then grabbed a Fruit Shoot and clasped it to his chest, looking at me with that irresistible cheeky smile. I caved and said he could have it.

I couldn’t believe what happened next. He pattered over to the till and waited till the person in front had paid, then handed it up to the lady. Showing not only that he knew we needed to pay for it, but also that he could identify where we had to go. Such a small thing for most children but I was so proud I was ready to burst. The lady serving probably thought I was crazy when I gushed about how wonderful he was. But I don’t care! My Pudding is wonderful and he is progressing in little ways.

Take that, Mucopolysaccharidosis! He is kicking your butt!

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A letter to our doctor

On By huntersmumIn hospital1 Comment

We usually meet in a clinic situation of course. Whilst I and the nurses don’t treat you with the proper respect and joke about all the time you spend away from the hospital playing golf (which you don’t) there is always a professional boundary. A line which I don’t feel I can step over.

At the MPS conference though I took the chance to give you a hug and tell you how much I thought of you. You laughed it off with a comment about being emotionally unavailable. You may also have thought I was a little bit tipsy. (I suppose I was, but I’d only had one glass – just enough to loosen my tongue.)

I’ve written about the wonderful nurses before and how they kept me going. But at a time when some pediatric doctors’ expertise and integrity has been called into question by sections of the media, I think it’s important you know what you yourself mean to our family, and I’m sure many others.

Just over two years ago, on Wednesday the 1st July 2015, we were told that our youngest son has MPS II, a progressive, life-limiting condition. These are the words that no parent wants to hear. Ever. We had been called in to see our local pediatrician who confirmed the diagnosis we had been expecting. And he told us that an appointment had been arranged for us to see the experts in Manchester the following Monday.

You’re probably used to shell-shocked parents arriving in your office, but to us of course it was all new. And yet… Having heard the worst already (at least I thought we had) it was reassuring to be there amongst people who knew all about this terrible diagnosis.

Infusion pump in sharp focus with Pudding on hospital bed behind.I’d already read everything the internet had to offer on Hunter Syndrome, or so it seemed. But you were so patient explaining it all again to Hubby and taking us through the next steps, telling us about the enzyme replacement treatment Pudding could start the next week. I’ve no idea how long we were in that office – over an hour I think – but I never felt that you were rushing us.

Over the next few weeks you often popped in when Pudding was having his ERT to see how we were doing and answer my questions. I had a lot, and you never shied from giving me the difficult answers. It was often hard to hear, but I needed and appreciated your honesty.

You joke about the nurses calling you emotionally unavailable but I think we all know that is far from the truth. When you had to tell me that Pudding’s DNA results showed a complete gene deletion (meaning inevitable progression of Hunter Syndrome) I could see how deeply you cared about us all.  Later when we talked about the fight that MPS IV patients had (and will face again) for a treatment to be made available, your anger at the situation was clear.

I have entrusted my son’s life to many people already – anesthetists, surgeons, pharmacists, even down to those who safely access either of his ports – but you are the expert at the heart of all these services. A kind, caring, down-to-earth, approachable expert that I am very grateful to rely on.

All our love,

From your biggest fans

Moody

On By huntersmumIn family3 Comments

I was in a foul mood yesterday. All day.

I was grumpy and resentful with Hubby. Shouted at T when he behaved like the 7-yr-old he is. And yes, I lost my patience with Pudding when he started throwing things again.

I nursed my grievances and stoked them until late afternoon. And the last straw was T refusing to shake my hand after a game of chess which HE won. Doors were slammed and I retired to the kitchen to sulk while making dinner. Ridiculous I know, and I’m not proud of myself.

Pudding in a stripey black and white top looking directly at camera, unsmiling.Ten minutes later and there’s the thud of little feet as Pudding leaves the TV to come and see if there’s any spare food available. He looked up at me with his open face and permanently questioning eyebrows and all that anger just melted away.

I knelt down and gave him a hug, his solid little body leaning into mine as he asked ‘Ere?’ (meaning ‘where’s the food?’). He smiled and tolerated my cuddle and kisses, accepting them as his due. In that moment I understood why T always runs to Pudding for comfort when he is upset. In Pudding’s world all difficulties are over in an instant. He cannot hold a grudge. Cuddles are whole-hearted and given without prejudice (though of course, he’s just as likely to give you a whack instead). He will never answer back.

Sometimes I would love to swap places with him, and leave behind all the complicated messy details of life. Eat food, watch TV and love life. Approach the world as if everyone in it will accept you just how you are. Smile. Spread joy.

I’m not very good at those things yet, my sweet boy, but I’m trying. I’ll keep trying.

Surviving

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Did you enjoy the holidays? As the beginning of the new school year is upon us I’m looking back on the last five or six weeks and trying to work out the answer to that question.

Pudding running towards camera. His big brother is behind him with hands on his shoulders.I suppose the truth is that I haven’t quite retained the boundless optimism of the beginning of the holidays. I’ve also not sunk back into the hole! But as with many SEND parents (excepting those whose children suffer from anxiety) I’m going to be very grateful for the start of term.

So how did I get on? Here is my full-proof method for surviving the long holidays:

Have lovely friends and family. As I said before, we didn’t book any holiday away. In the first week the boys and I went to stay with Grandma and Grandad. And last week we landed on some super friends in Gloucestershire who gave us the run of their house while they were away. We had very few instructions apart from ‘feed the cats’ and ‘we’re not precious about anything in the house’. In other words, don’t worry too much if Pudding breaks anything! He had a super time, exploring a whole new house and garden and terrorising the cats (hope they’ve recovered) while we could relax

Respite.  We had five 6-hour days when Pudding was looked after by an experienced short breaks worker. I know I’m lucky to get this. Some families don’t. Dealing with a Pudding is exhausting at the best of times, let alone day in, day out for 6 weeks. But I do sometimes wonder if it is just me not being up to the job. So it was with a certain amount of satisfaction that I heard at pick up time ‘Oo, I’m ready for bed now!’ from someone else. These days allowed T and I to get up to adventures that Pudding just couldn’t have joined in – from making natural sculptures in the woods, to a full day out at Lightwater Valley. I found it a really relaxing break and T certainly appreciated not having his fun curtailed by his sibling.

Divide and Rule. Much as I would love to have picture-postcard, perfect family days out where we happily do a range of activities together….. Well, it’s just not possible. Pudding can’t run very far before getting tired, so often needs to go in his buggy. And even then, he complains more these days. So after a bit of an explore somewhere new, perhaps some football, he is ready to leave. There is no bargaining or bribery possible – the promise of an icecream if he waits patiently for a while means nothing to him. Which means that T is often dragged away from whatever he has set his heart on doing. The answer we’ve found, like many SEND families before us, is simply to split up. One parent supervises T, while the other gets the job of pushing the buggy round (or sitting in a cafe!). Not always ideal, but it works in a fashion.

Cut yourself some slack. TV. It’s been on far more than I ever would have thought my kind of parenting would allow. But hey, maybe I’m finally getting better at adjusting my expectations. I may not be a perfect parent, but Pudding doesn’t seem to be complaining. Well…not much anyway!

Now the only question is, how will I be spending the first day they’re back at school? I’d like to say taking a few deep breaths, drinking hot chocolate and relaxing in a nice bubble bath. But we’ve got workmen round drilling lots of holes in the walls, so maybe not.

Summer

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I’ve got a confession to make. I’m surviving the summer holidays. Even enjoying it quite a lot of the time. But sssshhhh! Don’t tell anyone because I don’t want to jinx it.

Some people might think we’re strange as we haven’t booked a proper holiday anywhere – only a couple of long weekends, and one of them was at the hotel of Mum and Dad. The truth is, instead of time to relax weeks away can actually be more stressful than normal life. We have to make sure everything is Pudding-proofed and then there is also the issue of getting him to sleep in a different place. This often leaves us stressed, shattered and decidedly grumpy.

My approach this year is just to make sure that we have something to do each day – even if it is just to take our football to the local playground. And with the holiday shorter than usual (we only have 5 full weeks and 2 part weeks) it seems to be flying by.

Pudding still has ERT  every Friday and is in respite for a day each week. I have Niece and Nephew here quite a lot too. More children in the house usually makes it easier as they entertain each other. (But the bickering! OMG is this what most parents of siblings have to put up with? It’s unbearable!)

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

But what really makes the difference is attitude. My attitude, that is. With my improvement in mood lately, it’s so much easier to deal with Pudding-ness. I think I truly realised this the other day when he ran away with some of the washing I was trying to hang out, trailing it behind him all the way up the path. Instead of getting annoyed or upset, I laughed. And put it back in the machine once I’d chased the cheeky sausage round the garden.

I’m not saying there aren’t some more difficult days. The ‘I need to make some chocolate brownies now’ sort of days. In fact, today is one of those days because I didn’t sleep well last night and Pudding seems determined on throwing the entire contents of my bedroom down the stairs. So…I’ve given myself a break, put the TV on and am enjoying hearing his chuckles at the Twirlywoos while the others crash around my very small house playing hide and seek.

And now if you’ll excuse me, I have some very important baking to attend to in the kitchen. Anyone want to lick the bowl out?

School’s out

On By huntersmumIn school2 Comments

So here we are – last day of the summer term, and Pudding has done a whole year in mainstream.

This time last year I was anxiously waiting for September and wondering how things would go. There have been a lot of emotional ups and downs since then, but right now I’m facing the future with calm.

In reading other blogs from the disability world, I’m well aware that schooling, as with many other services, is a lottery. I feel very lucky that we somehow managed to get hold of a winning ticket. So many parents face discouraging messages: ‘we don’t feel we can meet his needs’ or ‘perhaps your daughter would do better somewhere they have more experience’. Yet at our local school I have only ever heard ‘How can we make this work?’

Pudding smiling widely in his red school shirt.

For inclusion to succeed there has to be the will, throughout the school, to enter into it wholeheartedly and there are many reasons why this year has worked for Pudding. A headteacher who believes in inclusion enough to have a member of staff dedicated to SENCo (Special Educational Needs Coordinator) work three full days a week. A SENCo who holds regular coffee mornings for parents to discuss areas of concern. Teachers who welcome difference into the classroom and explain it to other children. And most of all, a teaching assistant who throws herself into learning Makaton, developing resources, teaching and caring for Pudding as if he were her own.

And I have to mention the other children – one of the benefits of mainstream which I never expected is the way Pudding has been taken to heart by the whole school community. To watch the Year 6 children scramble to give him high fives has been such a joy to me.

There have of course been some negatives. There was the nativity which didn’t go quite as I’d have liked.  On days when Pudding was in a bad mood I would dread hearing that he’d badly injured another child when throwing something. Perhaps the most difficult thing, again unexpected, has been emails from the class teacher explaining what phonics or maths the children were learning that week. I’m afraid I just stopped reading these regular reminders of how far Pudding is behind on ‘typical’ development.

Much as I have loved the positive experience we have had in reception year, I did start to worry what Year 1 would be like. Whilst his peers move towards more desk-based work, Pudding still struggles to sit and concentrate at anything for long. In an open-plan environment I had visions of him becoming more and more disruptive. We took the difficult decision to apply for a split placement – requesting that he stay in mainstream for 2 days a week but then have the other days in a special school.

I say a difficult decision: logically I felt it was the right thing to do, but emotionally it was another big step on the path of acceptance. I wanted to give him the best of both worlds – keeping him rooted in the local community, but also having the chance of more specialist teaching with other children on his own development level.

Our request was turned down, due to lack of space in the special school.

I won’t deny that this decision really upset me.

But once again, Pudding’s current school stepped up to the mark. Almost immediately I got an email from the SENCo asking how I was, and reassuring me that they would put in place whatever was needed to make things work. And they have already. The children all move up to their new class three weeks before the end of term, so Pudding has now been in Year 1 for three weeks. In consultation with the special school they have set a personalised timetable for him and found a room where he can go to do focused 1:1 work. He has regular access to play resources and plenty of interaction with his classmates. And so far the results have been really positive.

None of us know what the future holds. Even with the intervention of his trial meds, the gap between his abilities and that of his peers will continue to widen. We may need to apply for a full-time place in special school for the next year. But for now, I know he’s in a great place.

And he’s happy. At the end of the day, that’s really all that matters.

Not to you

On By huntersmumIn family4 Comments

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.

Conference

On By huntersmumIn Uncategorized2 Comments

Timetable for the MPS ConferenceQuite a few people commented yesterday about the nice weather we’ve had this weekend. I know there was sunshine but I barely saw it as I was sat indoors in a dark room listening to presentation after presentation at a conference.

Not most people’s idea of fun, but I loved it. Because this was the conference organised by the MPS Society. It gathered together individuals, families, clinicians, surgeons and experts on mucopolysaccharidosis and other related conditions in the Hilton Hotel, Coventry. The whole hotel to ourselves, so no-one around to raise eyebrows at the wheelchairs dancing through reception or a child trying to make a break for freedom being chased down by a harried parent. From the moment we were greeted by the friendly MPS staff, we knew we were amongst family.

Pudding smiling up at camera before climbing into the car seat.

There is no doubt of course that living with MPS can be a stressful business, so the weekend started off with a session on mindfulness which Hubby found very useful. T and I managed to sneak in a visit to the hotel pool and then we were ready for dinner, the kid’s disco party and the chance to get to know other families. It’s a slightly surreal experience to meet people that I’ve only ever seen in photos until now, and greet them like long-lost friends. But that’s what it’s like when we’re tied together by this bond. MPS is no respecter of age, background, education or race and it forges close friendships that last through the years.

On the Friday evening we also got to meet our volunteers – wonderful wonderful people who gave up their weekend to take our children off and give them a fantastic time while we sat and listened to all the presentations.A few capsules on a ferris wheel It was a little nerve-wracking to send a challenging child like Pudding off with a complete stranger but I cannot sing their praises enough. For the brief hour that I saw T on Saturday – in between their trip to Drayton Manor and the evening entertainment – he talked non-stop about their volunteer and how great he was.

On to the main business of the conference itself – talks on all aspects of life with MPS, from cardiac complications, behavioural issues through to new treatments round the corner. Some of the presentations weren’t for the faint-hearted; Hubby had to look away when faced with slides on carpal tunnel surgery (not me, I find that sort of thing fascinating)! Some were more challenging on an emotional level – looking at Pudding’s future face-on can be a scary thing. And then there were the inspirational ones, like a teenager talking about living with MPS I (Hurler-Schie) who refuses to let it define her.

Air-con vents on the ceiling of a coachThere was more emotion at the Gala Dinner on Saturday when awards were presented to those who’ve made a difference to the MPS community. People who’ve gone above and beyond to raise money, campaign for treatment or support others. I might have cried just a smidgeon. I blame the wine. Afterwards there was time to let our hair down and have a go at some funfair games while the childcare volunteers continued their stirling work. We even got a little goody bag with items donated by a few companies.

The weekend was inspiring, disheartening, informative, tiring, relaxing and wonderful, and I can’t wait till the next one.

(The photos I have are mainly alcohol-fuelled Saturday evening ones on my phone, so I am illustrating this post with T’s slightly random pictures!)

Optimism

On By huntersmumIn hospitalLeave a comment

Two weeks ago we had a meeting in Manchester with the team that co-ordinate Pudding’s care. It was strangely relaxing in a way to drive over there outside of rush hour traffic, in beautiful sunshine, and knowing that we weren’t facing any needles or treatment that day.

We gathered in a room – me, him, the consultant, the doctor running the clinical trial and his specialist nurse – to talk through how things have been going over the last year. There are a few small concerns that we’ll look into; Pudding has been getting very tired again lately, sitting down to rest more often and having more naps. But overall, his weekly enzyme treatments seem to be doing the job of keeping his body working a little better.

We’ve had a blip with the clinical trial of course, meaning that he missed three doses of the enzyme into his brain. The operation to replace that portacath went very well though, and we are now back to the monthly routine of trips to the trial ward.

Pudding in a stripey black and white top looking directly at camera, unsmiling.Pudding is very slowly continuing to add to his vocabulary and make progress in small ways. I was able to tell them how recently he got a snack out the pantry which I’d accidentally left open and then put it back when I told him!!!! (This is huge, people!) Throughout most of the meeting, Pudding was sitting beautifully in his buggy and playing games on his tablet. The consultant commented on his concentration levels and said that in the normal course of Hunter Syndrome he would expect increased levels of hyperactivity by now. Overall therefore, he was ‘cautiously optimistic’ that the trial meds are working for him.

That’s good, right? So why do I not feel more…optimistic?

So many feelings continue to battle inside me. After the meeting I sat in the coffee shop downstairs and shared biscuits with my gorgeous boy. I watched children and their families passing by and saw PEG tubes and drip stands and monitors. And I was hit yet again by the thought that this is our reality now. The world where all these medical things have become things that I recognise and barely take a second glance at. The world that many people are blissfully unaware of.

Even if Pudding continues to do well on the IT medication it’s just the beginning. The treatment would need to get approval, we would have to fight for it to be funded. Gene therapy may become available and halt the progress of the disease even more effectively. And we continue to hope for all that. But I also have to bear in mind that Pudding will always have MPS – when looking for a new house I still need to think of future-proofing it. Would there be space for a downstairs bedroom or lift? What would wheelchair access be like?

Perhaps when it comes down to it there’s also an element of defence mechanism in my lack of optimism. If I continue to remember the worst outcome, then my world cannot crash too far.

I would so love to have a crystal ball. To look into it and take away the uncertainty. But of course we don’t. So in the meantime we continue learning to live with MPS. And we continue to love our little boy who is beating the odds and teaching us to walk through this world on a slightly different path. Despite how miserable my blog posts can sometimes be (sorry!) this path has many beautiful moments on it – smiles and laughter, wet kisses pressed onto my cheek and satisfying armfuls of chubby cuddles.

I may not be hugely optimistic about the future, but that doesn’t mean I can’t enjoy the present a lot of the time.

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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...'