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. 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’)

Paradise

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?’

It’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.

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

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.

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.

 

Surgery

Surgery this evening.

After finding out in March that the port that delivers Pudding’s trial medication to his brain is no longer working properly, he is having it replaced today.

This morning I chased him and let him climb on my back  and tickled him until we were both in helpless giggles, as I knew we wouldn’t be able to do that for a while.  I watched him eat a very early lunch knowing that in a few hours he would be looking at me with those accusing eyes and repeatedly asking for ‘bibit’ (biscuit). He kept running away with the bag I was trying to pack and for once I didn’t get cross or frustrated because I knew that he’s going to feel reluctant to move at all for the next week or so.

Pudding was very excited when we got back to the trial ward in  Manchester. We’ve not been for three months now so he was obviously keen to make up for lost time, running up and down the corridor and shouting ‘Found you!’ at all the nurses. Very cute, but it was difficult to share his enthusiasm knowing that in a few hours I had to sign a consent form for surgery listing ‘permanent nerve damage’ as a potential side effect.

The anesthetists here are fantastic, and experienced with the short neck and difficult airways that Hunter Syndrome produces. I trust them with my son’s life but I wish I didn’t have to.

At 6pm we walked down to surgery with him complaining all the way. It was nearly his bedtime. He was tired and hungry and had had enough. I watched his eyes roll back into his head as the anesthetic took effect. Now we wait for three hours until we can see him in recovery and listen to those pitiful cries as he tries to tell us that he feels rotten and he hurts and he doesn’t know why. And I’ll feel helpless because I can’t explain to him why he needs to go through this.

We’ll stand ready with the sick bowl and obsessively watch the SATS monitor over the next few hours. The TV will stay on for a week and we’ll check his dressings for any leakage of spinal fluid.

It’s his sixth general anaesthetic since diagnosis almost 2 years ago, and we’ve got used to the routine but it never gets any easier.