His eyes

It’s been a long day at hospital.

My back is aching and I am so tired. I go to bed but cannot sleep. When I turn out the light and lie down all I can see is his eyes. Red-rimmed and full of tears they look into mine and beg me to make it stop.

It was just a routine trip really. Our usual monthly trip to Manchester Children’s hospital for the clinical trial that Pudding is on. T came with us too as he really wanted to see where his brother has been coming for 3 years now. But as those who follow us on Facebook will know, we’ve been having a few problems with Pudding’s IV port – the one which we use for his weekly treatments. Towards the end of the day, we went down to Radiology to try and get a lineogram.

Pudding was already tired and we ended up having to wait far longer than we expected. I knew it wouldn’t be easy. He was hitting out in the waiting room. Shouting and hard to distract. He fought us as we got him on the X-ray table. We needed him to be still so we could get a clear picture but of course he can’t know this. He doesn’t understand.

So often his behaviour is physical  – being non-verbal he can’t tell us what he wants. He can take my hand and lead me to the kitchen cupboard to ask me for food. He can hand me his tablet to ask it to be turned on. He can throw things until I notice that his programme on TV has finished and needs to be turned over.

But as I stood at his head and pinned his arms down, he looked at me with those heartbreaking eyes. And I knew exactly what he wanted. It didn’t matter that he can’t talk. It didn’t matter that he has a severe learning difficulty. Clear as anything, he was saying ‘I don’t want to be here’. Speaking to my soul and begging me to help. And I held him down.

The lineogram couldn’t show anything anyway. In the time since it had been accessed the needle had come out of place. So we have to try again in two days time. He is now fast asleep, lying peaceful and unconcerned by anything. And I’m left here wondering what it will be like next time. Will he be in a better mood and will it all go swimmingly. Will he see the room and start fighting again? Will I need to look into those eyes again and tell him it will all be alright? Will I do my best to calm him when I’m close to tears myself?

At times like this all I want to do is whisk him away. Get him miles away from needles and x-rays and monitors and all the shitty implications of a medical life. Say goodbye to the hospitals. Live life in the moment and not think of the future. He should be in a field somewhere – kicking a ball, stroking a bunny, throwing stones in a river.

How can I ever know what is best for him? He’ll never be able to tell me whether I got it right. When the moment is past he doesn’t hold it against me.

But those eyes stay with me…

eyes

Can I love MPS?

The other day I watched my eldest, T, shooting zombies on a computer game and telling me enthusiastically about the gun he’d just got (ON THE GAME!) and how machine guns were the BEST. I sighed and wondered why with all the amazing toys and books we have around, it is simulated violence that wins out.

And then I had a bit of an epiphany.

His brother, Pudding, may laugh at cartoon violence but he will never get involved in blood-thirsty shoot-outs.

I read a lot of blogs about other disabilities and one of the discussions that I find both fascinating and thought-provoking is differing views of autism. Parents of children with autism often struggle to adjust to this different world and use strongly emotive language about it. Whereas adults with autism will point out that autism is a part of them and to say you hate autism is to say you hate them.

That discussion has often made me think about how I refer to MPS – I’ve frequently said I hate it and wonder what adults with the same condition would say about this. The trouble is, I guess, that when I write I often use MPS as short hand for ‘Mucopolysaccharidosis Type II (Hunter Syndrome) – the severe version’. It’s just simpler to write. And whilst there are adults with other types of MPS or the attenuated (milder) end of Hunter Syndrome, there are NO adults still living with severe Hunter Syndrome for me to ask.

If my son was diagnosed with cancer or caught a life-threatening illness, that would be less complicated – I could rail against that to my heart’s content. But MPS? Without MPS he would be a completely different boy. How can I hate something that is a part of him? And yet, how can I not hate something that will take him from me before he becomes an adult?

And yet, and yet, and yet. There are bonuses to having my boy with MPS. The lack of interest in violent computer games is just one of many.

He may never tell me he loves me but he will also never scream ‘I hate you!’ in the heat of an argument.

Pudding aged 3He may not ever find ‘the one’ special person in his life. But to him, everyone is special.

He will never get drunk and fall in through the door at 2am.

He may not join in nursery rhymes but he will also never disturb the whole street by playing thumpingly loud music.

He will never judge anyone based on their race, religion, gender or any other construct of society.

He will always need help with things but will never look at me with contempt because I can’t manage the settings on my phone.

He will never demand the latest toy craze because ‘everyone else has one’.

His uncomplicated joy in life is contagious.

And he may attract stares sometimes but he will also continue to bring many wonderful people into our lives.

There will always be the health aspects of MPS that I rail against and if I had a magic wand I would cure him in an instant. But there are things that I can celebrate about MPS as well. My emotions and thoughts around this topic will probably yo-yo though the months and years depending on what is happening around us. (I think another blog post is forming in my head about separating out the different aspects of health/disabilities and what it is that actually bothers me.)

But the one thing that will never change is that Pudding is my gorgeous boy and I love him with all my heart.