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.

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.

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.

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.

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.