Labels

I came to a realisation in the wee early hours this morning when Pudding was slumped next to me on the sofa snoring. (Yes, more vomiting. And yes, I’m fed up of the smell.)

I was thinking about the fact that he has possibly acquired some different labels without us even being aware of it.

When he was first given the ‘development delay’ label, I found it very difficult to take on board. It was confirmation of something that I had been worried about for a while – that he wasn’t progressing as well as his peers. It meant he was walking a different path to what I had always expected from my children. And although I had wanted to find out what was going on and had sought help, it was hard to hear those official words. But on the plus side the label also carried with it the hope that things might change – that he would catch up at some point.

Of course he was then given his primary diagnosis of Hunter Syndrome affecting the brain. We have no idea what his potential is under the clinical trial or if gene therapy ever comes available. But he is unlikely to ever catch up with other children his age. Any development he makes will be slow and achievements will continue to be hard-won.

Now he is five years old, health professionals may now be more likely to use the term cognitive impairment or learning disability. And the difference this time is I don’t mind at all. My true realisation as I’m writing this is that it just doesn’t matter. This time it’s the label that is catching up with my acceptance rather than the other way round.

He’s my Pudding, whatever the label.

 

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.

Nothing and everything

In the run-up to MPS Awareness Day on May 15th, the MPS Society is asking us all ‘What does MPS mean?’

Last year I already wrote a long (and emotional) post about what it means to me as a parent. Of course, most of this blog is from my perspective. I share what I’m going through, what I think. It’s my personal journey through the minefields of MPS.

But what about my Pudding? What does he think of MPS? Well, there’s the great unknown. When your child has only limited words, even a simple conversation is impossible let alone an in-depth one. He has certainly heard those dreaded initials often enough in our house, but have they made any impact on him? I doubt it.

He doesn’t know why he has to put up with treatments and needles. He doesn’t know why he can’t talk. He doesn’t know why he is different to the other children in his class. I’m not even sure he realises he is different. 

MPS has sculpted every bit of him. From his big belly, and the fingers that don’t straighten to his broad nose and big forehead. But when he looks in a mirror he doesn’t see that – he just smiles at his reflection in the same open way that he does with anyone else he comes across.

That simple mistake in his DNA that has turned our life upside down for the last two years means nothing to him. And in a way I’m glad. For if he ever gains enough ability to question it, how could I possibly explain?

 

(If you’d like to let the world know what MPS means to you, you can download the poster from the MPS Society website. Share it on social media with the hashtag #WhatMPSmeans)

 

What will you do?

One hundred years ago Charles A Hunter, a doctor working in Canada, first described the symptoms of Hunter Syndrome. In 2017, there are still children dying from this and other mucopolysaccharidosis conditions. That is why MPS Awareness Day on 15th May is just as relevant as ever.

Every year we ask friends and family to join us in wearing blue (purple outside the UK). Clothes, hair, lipstick, nails – whatever you like really. Last year it was a Sunday, so me and the boys went out to a nearby stately home with Sister, Niece and Nephew, all dressed completely in blue. This year it’s a Monday – so great for making maximum impact at work, the supermarket  or wherever!

The MPS Society have resources such as posters and fundraising ideas to help. You can even change your Facebook or Twitter picture to MPS Awareness. Go have a look and get involved – I’d love to see your pictures on the day itself!