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?’

Hubby looking out from a balcony at the grounds of Martin House at several rabbits on the lawnIt’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.

A path winding through some trees and under a pergola. Hospice buildings in the background.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.

Pudding in a check shirt frowning slightly at the camera.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.

Ups and downs

It’s been a funny old week. Ups and downs. Tears (mine) and vomit (Pudding). Hopes raised and feelings of despair. Some weeks fly by with barely a worry, and other times even the littlest of things can trigger days of anxiety and low mood.

I’ve said before that I hate it when Pudding is unwell. If he can’t tell me what’s wrong it all becomes a guessing game. At least this time we had some warning: Hubby had gone down with a sickness bug the week before so when I heard a strange cough in the early hours of Sunday morning it was a dash to find out which boy I had to stick a bowl in front of.

Ten minutes later (with first load of bedding in the washing machine) and Pudding was installed in front of the TV where he pretty much stayed for the next few days. Bang went our plans for meeting up with the rest of the family to wow the world with our wearing blue en masse! And also bang went my plans to spread awareness the next day.

Being stuck at home with a grumpy poorly boy watching the rain pour down outside was not guaranteed to raise my mood much. And the added tension of diving for the sick bowl every time he gave the slightest cough didn’t help.

BUT even in the down times there are always highlights. Seeing Facebook turn blue (or purple!) for MPS Awareness Day did help so thank you to anyone who supported that. Thank you to my gym who held a bake sale. Thank you also to the child who told me that my blue lipstick made me look like I’d drawn on my face with pen – it gave me the chance to let your parent know about MPS and my blog. Thank you to Hubby who made it possible to get to my first counselling session (more about that another time) on Tuesday when Pudding celebrated the end of his 48hr exclusion period from school by being sick again. And thank you to all the friends that I whinged at/cried on over the course of the week.

On Thursday we were finally able to send Pudding back to school and the sun even came out. When the sound of renovation work next door became just too much I could escape to the gym to do some writing and giggle my way through an aqua zumba class. And breathe.

Although it never feels like it at the time, the downs are usually followed by ups. I just have to be patient.

 

PS I mentioned on Facebook that we might have a date for the port surgery to be done. Spoke too soon unfortunately. But we hope that it will happen in early June.

The ‘new normal’

Last week I was having a conversation with someone about emotions. Of course when Pudding was diagnosed with Hunter Syndrome I went through all of them – anger, guilt, desperation. I was drowning in the strongest emotions that I’d ever felt. When you first hear that your child has a condition that may kill him, your world comes to an end.

But now? When asked how I felt now, I was at a loss. My first reaction was ‘I’m fine.’ I’ve mentioned before the ‘new normal’. It is a phrase used to describe what happens to us after diagnosis. For a while everything is rocked, and then gradually we get used to our new life – it becomes normal.

Yes, on the surface of it I am fine. Life continues with its little triumphs and annoyances. I plan meals, pretend to be a superhero on the school run, tut at clothes left on the floor. Yet that isn’t really the full answer.

mum picHunter Syndrome bubbles along under everything. Even when I think it is all is going along swimmingly, the bumps are only hidden just under the surface. It doesn’t take much to make me wobble. Sometimes just a kind act lets the tears flow. And I know that I may have to get used to a new normal many times.

There are so many worries that beat around my head. Whether I give enough time and attention to Twiglet. Whether the clinical trial will have provable benefits and whether it will be made available as a treatment on the NHS. Whether the next general anesthetic will go well. Whether gene therapy will come in good time. Whether, if Pudding reaches adulthood, there will be the support in place that he is bound to need.

And yet… and yet because of the friendships I have made and the blogs I read I know what other parents have to deal with on a daily basis. We are luckier than many.

So it is sometimes a surprise to me when mums in the playground show amazement at our new normal. A normal that now includes regular prescriptions, weekly treatments, and trips to Manchester children’s hospital every month. And these are things that I am so grateful for, though none of it is ideal.

If I stopped to think about it too much myself, I’d probably be amazed too. And overwhelmed. And when there is shopping to be done, and washing, and a family to care for, overwhelmed would not be a good thing. I just couldn’t live with such heightened emotions for month after month after month. So for now I continue on this new road and try to look out for the bumps on the way. I’m still not entirely in control but hopefully I can steer around the worst of them.

How do I feel? It’s ….complicated.