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.

Progress

I am finally allowing myself to believe that this clinical trial is working for Pudding. Although I have seen the results that other boys have achieved, I have until now always had to remind myself that:

a) a trial is exactly that. A trial. What works for some may not work for everyone and that is why they have to test it out.

b) at the time of testing Pudding had almost the lowest possible score that would still allow him to go on the trial. With results that unpromising I had no idea whether this would effect what we could expect from the drug.

The natural course for those on the most severe end of Hunter Syndrome is for progression until some time around age 4 or 5, and then a time when skills plateau before being gradually lost. This is because the normal enzyme replacement therapy that Pudding now receives weekly doesn’t cross the blood brain barrier to work there. In the hope of stopping this regression, every  four weeks we make a trip to Manchester for a concentrated form of this enzyme to be injected into his spinal fluid to break down waste products in his brain.

Since very early on, Pudding has always continued to develop and improve, albeit very slowly compared to others in his age group. Lately it feels like his rate of progress is making a little leap, and as he gets closer and closer to his fifth birthday we have to see that as a good sign.

Most of his achievements might not seem very much to another mother of a four and a half year old, but for us they are massive. As well as continuing to add to his vocabulary, his understanding is continuing to improve. For instance, when playing ball the other day I told him to ‘Stand further back’. I had to work SO hard not to accompany it with a gesture as I wanted to check whether he understood without. And he did.

IMG_8134He can now almost finish this set of jigsaws without any help; he picks out all the bits correctly and only struggles with putting together the three-piece police helicopter. (He is also often very insistent that the policeman drives another vehicle, but I’m not going to argue about that one!)

His ability to compromise is also improving. Rather than just stubbornly demanding TV he can now sometimes be encouraged to help tidy up first.

He has got used to lots of new routines at school and has even in the last few days been able to pick out his name from amongst all the other children’s. (Not something I’ve been able to recreate at home, but again we can’t have everything!)

So I should be feeling nothing but pride in his achievements and relief, right?

Well…mostly.

Part of me (a small part) doesn’t really want the trial to work. I can hardly believe I’m actually writing this. What an unnatural parent I must be to wish away my child’s chance at life. But much as I feel bad for this I can’t brush my emotions under the carpet and pretend I never have them.

The truth is, if the trial doesn’t work then I won’t have to live with the fact that we have this chance when others don’t. Others who didn’t pass the screening, or for whom it came too late. Others like Ethan who I was so happy to meet only a few weeks ago but who is currently having a hard time of it. Other mothers’ sons all around the world who deserve a chance too.

I know that allowing my child to suffer will not alter the suffering of others, so of course we will continue on this path. I hope it is proved to work. I hope the NHS will accept it as a treament. But I will continue to feel guilty about it.

So I ask of you, please celebrate with us when things are going well, but don’t forget the rest of our MPS family. I’m grateful for this trial, I truly am, but it is only a stop-gap. A far from ideal solution. We need a cure.

Guessing games

This morning Pudding woke up crying. I hear him whimpering in his cot and go to get him out. When I bring him downstairs he sits on the sofa, his normally cheerful face red, contorted and tear-streaked.

Cuddles make no difference.

Even breakfast doesn’t tempt him.

Was it a bad dream? Was he feeling sick? Was it something else?

I put on the TV and Twiglet finds his favourite show, ‘Sarah and Duck’. The magic box soothes him, the storm passes and a few minutes later he starts on his cereal. I hover with towels and sick bowl at the ready, just in case.

It is this that I hate most about having a minimally verbal child. That I never quite know what is going on for him in his times of need. That I have to play the guessing game. That even when he does talk I don’t always know what he’s trying to say. No matter how many times he earnestly repeats ‘De de de Doo’ at me, I haven’t a clue what it means though I know it’s obviously important to him.

I know we’re better off than some. His language is improving all the time, slowly increasing in vocabulary and clarity. He can now put two words together, though only in limited situations. And I am hopeful that he will continue on this path.

Of course it would be fabulous one day to hear ‘I love you, Mummy’. But he doesn’t really need to tell me that because his actions tell me that every day. What I would love him to say even more is ‘Tummy hurts’. Words like that could make such a difference.

He’s fine again now by the way, sick bowl still unused. I’m just faced with the problem of how to turn the TV off without becoming very unpopular again.