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.

Photos

I love looking through baby photos, don’t you?

Those sweet little expressions they used to pull, the chubby cheeks, the memories they bring back…

And there’s the rub. Because the memories can be bitter sweet.

Whilst I enjoy Facebook’s On This Day feature – laughing at the funny things T used to say, or reminders of days out we enjoyed – sometimes it punches me with what could have been.

I might see a photo of the panto we went to a few years ago and realise that Pudding never says anything as clearly now as when he asked ‘Where de moo?’

A photo will come up of a hospital bed, and I’ll be transported right back to those terrible first few months where the only thing that seemed real was the knowledge that I couldn’t escape this nightmare.

Pudding aged 3Sometimes though the hardest photos of all are those from before diagnosis. When I had never heard the initials MPS. Photos from more innocent days. I look at his so-obviously-Hunters face and think ‘How could I not have known? Why didn’t I fight harder to get his delays looked into? Why did I let the professionals’ dismissals over-ride my concerns over the way he looked and acted? How could I have missed what is so obvious to me now?’

Pudding aged 2

But of course I couldn’t have known. I’d never seen a boy with Hunter Syndrome before. I didn’t know what that baby face with its broad nose and big forehead meant. I didn’t know what all the niggling little symptoms added up to. How could I have done? That’s the problem with rare diseases like mucopolysaccharidosis. You rarely see them.

And that’s why I keep on blogging and sharing pictures of Pudding. In the hope that one day, somebody somewhere will recognise these features in their own child and press for a diagnosis.

I can’t stop them feeling all that pain, but hopefully in the future they won’t be the one looking at happy memories and wondering why they didn’t know.