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.)