MPS Parents

Today is MPS awareness day – the fourth I’ve marked since Pudding was diagnosed with Hunter Syndrome in July 2015. Whilst I have come to more acceptance of the condition, I can never ‘celebrate’ it.

But what I can celebrate are the other wonderful parents that I have met because of MPS:

The parents who spend weeks in isolation with their child through a bone marrow transplant.

The parents who travel across the country to sit for hours by hospital beds.

The parents who want to be there for procedures but can’t leave work.

The parents who have to stay strong so they don’t crumble in front of their kids.

The parents who can no longer physically manage caring duties 24/7 and have to welcome strangers into their house.

The parents who have no option but to soldier on with no help whatsoever.

The parents who encourage their kids to achieve whatever they can.

The parents who have to make decision after difficult decision.

The parents who learn to take on the role of nurse as well, accessing portacaths to administer treatment.

The parents who hold down a screaming child for yet another needle.

The parents who fundraise and push for new treatments.

The parents who are reeling in shock at one child’s diagnosis and are then told that their baby may have it too.

The parents who step into the unknown on clinical trials knowing that it might not even help their child, but may pave the way for the future.

The parents who have had to give up hope of seeing a treatment in their child’s lifetime.

The parents who dreamed of planning university and weddings and instead plan their child’s funeral.

The parents who are watching their child slip away bit by bit.

The parents who have already lost their child.

The parents who wish they had never heard those three little syllables, M. P. S.

The parents who are convinced that they are broken, that they cannot fight any more. And those same parents who carry on regardless, day after day, because that’s what parents do.

The parents who will love their child, for ever and for always.

You are all amazing. You are all stars. I wish I could send you all chocolate and flowers but virtual ones will have to do…

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Aware?

May 15th – MPS Awareness Day

I did intend to plan something this year. Something to raise money and get noticed. Make some noise and increase people’s awareness of mucopolysaccharidosis. It’s not really in my nature to draw attention to myself, even so I felt it was something that I should do.

But I haven’t planned anything at all.

To be honest, the last couple of months I’ve wanted to stick my head in the sand and pretend that MPS just doesn’t exist. But of course, my son doesn’t have that luxury. The effects that MPS has had on his brain stop him from knowing what it is doing to him. But I am very aware.

I am aware that his breathing is louder than it was, and he needs to rest more often again.

I am aware that many of his hard-won skills, such as pointing to head, toes or eyes, have faded away.

I am aware that he hasn’t grown in the last six months and is now on the 9th centile for his age (up until he was four he was on or above the 75th centile).

I am aware that he has lost most of the words that he was using.

I am aware that the treatments that should be stopping all this from happening are prevented from doing so by his own amazing immune system.

And most of all I’m aware of what all that MEANS. It means that unless something else can be done we are watching our vital, happy little boy die very slowly in front of our eyes.

Since we moved to our new house six months ago, the practicalities of our situation have been a lot easier to deal with, but emotionally the reality of MPS does hit me hard at times. So although I haven’t planned any awareness events, what I can do – what I have always done – is write.

I write about our experience so that others can learn about MPS; so newly diagnosed families can feel a little less alone. I write to save my sanity and hope that I spread awareness that way.

All the current research points to the fact that the earlier MPS is diagnosed the better; the few existing treatments (and new ones coming through) are much more effective early on while the body is still developing and before too much damage is done. So, please, for Pudding’s sake this MPS Awareness Day wear blue, share a post or two, donate if you can, and spread the word.

I’ll be wearing my blue wig and MPS T-shirt all day, and spreading awareness where I can. Who’ll be joining me?

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Micklegate Madness

Despite appearances to the contrary (after all I love acting, and share a fair amount of my life on here) I’m not actually very keen on standing out. I’m more of a keep-quiet, blend-into-the-background, kinda gal.

Pudding however, has a habit of turning things upside-down. And I’m not just talking about the kitchen bin here. He challenges me to change my life too. Four months after his diagnosis I shaved off all my hair to raise money for the MPS Society. The response was brilliant and the final total was over £3000.

Three years on and I’ve seen many people taking the effort to do fantastic fundraisers. I’ve toyed with various ideas and I’ve felt bad that I’ve not got round to making any a reality. Part of it, I know, is down to struggling with my own demons. That’s about to change but it’s not down to me.

pudletA couple of months ago I got a message with a proposal (no, not that sort!). I’ve written before about how much the support of friends means to me, and one lady has featured in a previous blog when Pudding was invited to her daughter’s party. Her message suggested the frankly quite stupid idea of driving an engine-less soapbox cart down a steep hill and wanted to know if I’d like to be part of the team and raise money for MPS. Once I had established that I wasn’t expected to step foot in said cart and just had to help push, I of course had to reply a resounding ‘Yes!’

Don’t worry – the cart has brakes and is part of an organised event, so I’m fairly confident that my friend will still have all her limbs by the end of the day. The Micklegate Soapbox Run has been held on August bank holiday the last two years and is already a brilliant local fixture. Some other lovely ladies have been persuaded/bullied into joining our team, the cart is looking great and Danny’s Daring Damsels will soon be flying down that hill.

But now of course, I have to do the bit that I find difficult – to ask whether anyone fancies sponsoring us! The link is on justgiving, so it’s dead easy and I will love you forever. So will Pudding. Though to be fair, he loves everyone anyway…

Don’t forget, if you’re in York on the day you can come and cheer us on!

(And before anyone else says it: I know ‘dame’ would probably describe me more accurately than damsel, but it didn’t sound as good, so there!)

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.

The BFG

IMG_8111Once upon a time in a place not so far from here, a little boy was bursting with excitement. He had just met a real live author and now had a shiny new copy of a book signed by this famous man. His parents told him to look after the book as it was special, so he did. He read it carefully, marvelling at all the delumptious words, then he put it away on his bookshelf.

Years later, and that boy had grown into a man. He got married and had two boys of his own. As the eldest son grew and developed a love of stories, the man got down his book from the shelf and they started to read it together. Until this strange new invention called the interweb told the man that the book could be worth some money. The book was returned to the shelf and a less whoopsey-splunkers paperback was purchased.

Then the man’s second son was diagnosed with a rotsome genetic disorder. They got through the next year somehow. One day, the man suggested to his wife that they sell the book to raise funds for the people who help his son, and his wife said it was a scrumdiddlyumptious idea.

After all, what’s the point of holding onto a book – however precious or important? Family is what really counts.

So, I’m becoming an expert on the condition of old books. Is it a first edition? Yes. Is it a first printing? Ooh, yes. Is that foxing or tanning on the upper edge? Bit of both. Any marks on the pages? A spot on the signed page and one on page 26. The level of detail that’s needed is remarkable….

We’ve received an offer from one bookseller already, but can we do better? I don’t know – watch this space. (Proceeds going to the MPS Society. More detailed photos available to interested parties – comment or message me for details!)

In the meantime, Twiglet is really looking forward to the film coming out. Are you?