The necessary

We’re back in Manchester again. Clinical trial dosing day. Sometimes it seems to come round really quickly. And today I really didn’t want to come.

Pudding watching TV in the hospital playroom

There’s a bug doing the rounds at the moment. Pudding had it last week and very kindly passed it onto me. It wiped me out completely on Friday (Hubby said that he knew I was ill as I wasn’t even going on Facebook) and I expected to feel better the next day. But I didn’t. Or the next day. Or Monday. No awful symptoms, just feeling bloated and spacey and draggingly tired.

The thought of setting off on the train and spending a long day in hospital today was about as welcome as…well I’m sure you can think of something. I checked with the ward hoping that they would say not to come, but they didn’t.

A couple of people asked whether I’d be better just staying at home and missing the dose, and oh I was so tempted. But I couldn’t ignore that little voice in my head. The one that reminds me how important this treatment is. The one that whispers how lucky we are. The one that warns we may not have too many other doses left to us if it doesn’t get approved or funded.

So I’m here. And coping.

We do what we have to, don’t we? All parents do. We get out of bed. We make sure they’re clean and fed. We nag them about homework. We stand by the side of a pitch in the rain. We travel across the country. And we hold them down for needles. Our own needs sometimes just have to take second place.

We do what is necessary.

Gym

Many people consider going to the gym as a luxury. Not me.

Anyone who knows me will vouch for the fact that I’m not a natural exerciser. I’m not completely sedentary, but the idea of going for a run (heaven forbid!) makes me shudder. But I joined a gym in January and have defied the odds by actually continuing to go.

Last week, I got a slight cold and the lack of sleep led to my back grumbling. If you’ve ever had back pain before you’ll know how awful it can be. The idea of being crippled by that intense pain again was scary. I wasn’t just thinking about the impact on me, though that was a big issue; I’ve spent months recovering in the past while living on my own, which of course wasn’t much fun.

If I was to suffer pain like that again now, it would affect so much more though. If I was in pain who would push the heavy buggy to and from school? How could I drive Pudding to appointments and hold him still for the needles? How could I run after him in the playground, or wrestle him to the ground for a nappy change?

What happens when a carer is no longer able to care? I know Hubby would have done what he could but he has a full-time job. And what happens to those carers who don’t have anyone else to rely on?

Some trainers and a gym bagPudding weighs over 4 stone now and looking after him is hard physical work sometimes, particularly when I’m only 8.5 stone myself. My only solution is to make sure I’m as fit and strong as possible. Hence the gym. It helps that the place I go to is full of friendly faces and has a pool and classes as well, so it’s not just slogging on the gym floor. (I’m easily bored!)

The gym for me is not a luxury, it’s a physical necessity. And this week I realised that it’s even more than that. My mood took a bit of a nose-dive with the back pain, and even when I started moving better my mood didn’t. Eventually I forced myself out to do an easy work-out on the treadmill, etc, and I felt so much better all round. Yes, I know that exercise releasing happy endorphins is hardly a revelation yet it makes a difference finally realising it for yourself.

I’ll never be a proper gym bunny but I can admit that sometimes I do quite enjoy it! Maybe some day I may even get round to replacing my embarrassingly tatty trainers…

Marriage

Weddings are easy. I’ve never quite understood all the stress about them. We had a lovely little register office ceremony followed by a meal at a local restaurant for good friends and family.

Marriage though, that’s the hard bit. Marriage, and any other long-term committed relationship, can be full of little niggles. ‘Why doesn’t she ever remember to lock the shed?’ ‘Why can’t he hang his towel up properly?’ ‘She talks in her sleep.’ ‘Oh my word, will his snoring ever stop?’

Ours became harder after having kids. Routines get interrupted by small, demanding bodies and lack of sleep isn’t known for improving rational conversation. Relaxed weekend mornings become a thing of the past. And we weren’t the first couple to realise this new life makes a difference. Many parents struggle to find time for each other.

So when you add a disabled child into the mix and all the emotional stress of a life-limiting disorder, it’s little wonder that many marriages break under the strain. Studies have shown that the risk of divorce or separation is higher for those parenting a disabled child.

I think we’ve both got better recently at looking after ourselves. Hubby has taken to meditating and doing brilliantly at it. (Sometime soon I expect I’ll blink and he’ll have turned into a Buddhist monk.) But amidst the self-care we have to remember to think about each other too.

Swinsty-031Yesterday Hubby had a day off work. I was full of cold and very tempted just to go back to bed, but instead I made the effort and we went for a walk. I was so glad we did. The sun was shining and the wind blew away some of my fogginess. We chatted. We listened to the birdsong and laughed at the inescapable smell of cowpats. We took full advantage of the kissing gates. It was even warm enough to eat our lunch outside at the cafe.

Hubby and I have obviously had the occasional meal out or cinema trip once the kids are in bed. But making the time to go out together during the day, felt … more relaxed, more free, more like before having children. A reminder of how important we are to each other.

Recently I wrote a sort of love letter to our doctor, so I guess it’s only fair I write one to you too, Hubby.

I know I find it hard dealing with much of Pudding’s difficult behaviour and appointments myself. But you don’t have an easy life either – working full-time and also having the same emotional strains. I’m glad that we are able to talk things through and I admit that the reason why any relationship niggles don’t last too long is mostly down to you. You are so much better than me at building bridges.

In our marriage vows I promised to be there when you cry and to laugh at your worst jokes. I promised that when we disagree I would do my best to understand you and that when I was hurting I would try to tell you why. I’m not sure I do too well on some of these (you make the jokes one particularly difficult!) but I do think of what I promised quite often. And I do try.

You’re by no means perfect but then neither am I. No matter how grumpy or sulky I get, you should know that I’m glad I’m walking this path with you. I couldn’t have chosen a better husband or father, MPS or no MPS.

Love always, SB xx

For those in the same position looking for more advice and support, Contact (previously Contact a Family) has a great booklet on looking after your relationship while parenting a disabled child.

Service Station

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

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

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

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.