Clouds

Do you ever have one of those days where clouds hang over you and your bad mood just infects everything? Where you spend hours feeling angry/anxious/miserable for no very good reason? One of those days when you wish you’d just given up and gone back to bed?

Yesterday was a bit like that. By the afternoon, lack of sleep caught up with me and everything just became a bit too much.

I got irritated when Hubby bonded with T over computer games rather than getting him to do guitar practice or tidy his room.

I snapped when Pudding ran away with my phone. Again.

I wanted to cry when faced with another load of washing up.

I felt horribly guilty when snatching the rolling pin away from Pudding (again) that I accidentally banged his head with it.

I lost it completely when T refused to eat his dinner ‘because the pastry fell apart’.

I felt sick to my stomach when thinking of potential reactions to a tweet that I never even wrote (yes, I’m expert at catastrophising over hypothetical things!).

And any number of other ridiculous little nothings. By the evening I was a seething mass of bleak negativity. It got to the stage where I was putting off going to bed as I knew that I would only lie there replaying everything over and over which would stop me getting to sleep.

And then just before I went upstairs, something on the kitchen wall at eye level caught my gaze. A bit of wilted spinach that I’d pulled out of Mr Fusspot’s dinner and flung at the bin in a rage. Was my aim really THAT bad?

I’ll have to admit, it made me giggle. And everything suddenly seemed a lot better.

Moral of the story?

Every cloud has a spinach lining!

(I should have taken a picture of the spinach stuck to the wall, but I didn’t think of that. So here’s a picture of the leftover tortellini pie that I spent a significant amount of time making before watching both boys reject it. It was rather tasty!)

Tortellini pie (pasta in a white sauce, layered with tomato sauce and spinach)

Hatred

T, Niece or Nephew sometimes say things to me like ‘I hate broccoli’ or ‘I hate doing science’ and I’ve always told them that hate is a very strong word. That maybe we can think of a better way of describing how we feel about something.

But I can say truthfully and unequivocally, I hate, HATE, hate MPS.

I hate that mucopolysaccharidosis is a word that now rolls off my tongue easily when most people have never heard of it.

I hate that people I know are having to make heartbreaking decisions.

I hate that I have to watch my son take medicines and needles and recover from anesthetic with no idea why he’s being put through all this.

I hate that children are dying.

I hate that I’m too tired and miserable today to even try on some clothes that I’ve just had delivered.

I hate that I see other little boys with nasal cannulas and g-tubes.

I hate that every time you think things are looking up there is another barrier to face.

Pudding watching TV in the hospital playroomI hate that the few other families who know and understand this MPS life are spread all over the world and often out of reach.

I hate that I have to understand terms like ‘neutralising antibodies’, ‘urinary GAGs’ and ‘hypertrophic cardiomyopathy’.

I hate that this bloody disease punches you and punches you and punches you again.

And I hate that I can’t make this any better for my little boy.

 

Sometimes the word hate simply isn’t strong enough.

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.

Optimism

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

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...'