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…

IMG_6520

 

 

Interview with an MPS sibling

Most people will know that #MyMPSHero is a chubby little boy with a big smile and an impressive head of curls. But of course there are many heroes in my MPS world and today I’m handing over to one of them. MPS siblings put up with a lot and my biggest boy, T, is no exception to that. We’ve always tried to be open and honest with him about Pudding’s condition but sometimes I do wonder what he makes of it all. T agreed to be interviewed by me for this blog post and I’ll leave his words to speak for him:

Boy wearing #MPSday t-shirt with a blue paper bow-tie and moustacheHow would you explain Mucopolysaccharidosis to someone who has never heard of it?

It’s a disease that not many people get so it’s very rare. It makes lots of the parts of your body not work very well.

How does it affect your brother?

It’s stopped him from talking and he doesn’t really understand very much of what we’re saying. He never actually goes by rules of games because he doesn’t understand. I don’t like thinking about the bad bits because it’s too upsetting.

What’s the best thing about living with Pudding?

Cos of MPS that’s made him look really cute, so that’s nice. He also gives really good cuddles and kisses.

And what’s the worst thing?

That’s easy to say – he always hits us and throws books at us. Other things as well as books.

What is he good at?

He’s good at throwing things! And as I already said he’s good at doing cuddles and kisses. He’s also really good at football.

What do you think he’ll be like in the future?

I don’t really know. I’ve got an idea that some time there might be an antidote to MPS. But I don’t want it to stop him being cute though.

Do you have any advice to give other children who have a brother or sister like Pudding?

You’d better get good at dodging things. But try not to get angry when they do throw things because then that encourages them to do it again.

I know you didn’t like it when he moved away from the school you go to. Why was that?

I liked him being at school because he would roam around a lot, and sometimes he would come and invade our classroom and give me a cuddle. But I’ve got used to him not being there now.

Can you imagine what it would be like to have a brother more like you?

Yup.

Do you think you’d prefer that?

Not really, because I like Pudding. He’s cute.

So do you think he’s the best brother you could possibly have? (incredibly leading question from the interviewer!)

Yes!!

Birthdays

It’s birthday season and I find it hard to believe that my little Pudding will soon be six years old. I look back on pictures of him as a baby and it’s like looking back on a different world. One in which he had so much potential, so many possibilities in front of him.

However, this is our world now and as with Christmas I think we’re going to get it right. Pudding loves birthday cake and being the centre of attention, but otherwise doesn’t really ‘get it’. Give him a wrapped present and he’ll grin widely and then chuck it away. So, we’ll do things the Pudding way.

Pudding holding a wrapped present and smiling.I’m not planning a proper party where he’ll be expected to do things properly. Instead we’ll just be going to our local soft play centre and suggesting to a few friends that they join us there if they’re free. And I know he’ll have a lovely time running around and playing football and building with the bricks. And I’ll have a slightly less lovely time running after him and trying to distract him from the cafe counter and the ball pit (his aim when throwing balls at other kids’ heads is devastating!).

Part of me feels a little bit guilty for taking the easy option, but truth is that the easy option really is better for both of us. Some day I just need to let go of the idea that ‘normal’ is the only way.

Of course, ‘normal’ is still what I’d like quite a bit of the time. I’d love my child to welcome other children to his birthday party and go to theirs. I’d love him to help me pick out the right presents for his friends and get excited that there’s only one sleep to go before a party. But we don’t get all that.

Pudding has only been invited to one party so far this school year.

Of course, he doesn’t know or care, which makes it easier certainly. There are other children out there though who do know. Children who see everyone else in their class getting invites or talking about the fab time they had. Children who want to have friends and don’t understand why they get sidelined. It is heartbreakingly common for children with learning difficulties or other disabilities that set them apart from the crowd.

Which made it all the more lovely to hear a positive birthday story recently. One lady in a Facebook group I belong to for parents of children with SEND sent out a message to all those children who never got invites. She wanted them to feel included for once so offered an open invitation to her son’s birthday party. Even people she had never met were welcome to come and join in the fun. How wonderful is that?

Of course I don’t expect everyone to do that (and I’m also not angling for loads of invites to land on our doorstep!) but wouldn’t it be nice if children with SEND were included, properly included in all areas of life. We can’t force children to be friends with someone, but I suppose what we can do is take the time to encourage them to think of others. To reach out to someone who seems lonely. To see that someone who acts a bit differently to them is just different, not wrong.

It feels like I’ve moved off topic a bit, but I guess what I’m saying is that special occasions such as birthdays often serve to highlight how different life is for us than how I expected it to be.

Different, but not wrong…

Lucky

Well, what a hectic half-term that was. We headed to the wilds of a Yorkshire forest for 4 nights with my parents, Sister and family. Then it was back home for Pudding’s ERT, straight off to Leicester, via Martin House, and back just in time to drop both boys off at school yesterday morning! Hubby and I were both fairly sleep deprived and loved having our own bed  last night, but the week has helped me realise again how lucky we are.

Yes, I know how strange that might sound to some people. And I certainly couldn’t have imagined saying it two years ago when we first got Pudding’s diagnosis, but lucky we are.

Pudding in red waterproofs running away along a forest path.

The Forest Holiday (which could have been a disaster if I hadn’t realised we’d booked for a completely different site to Sister) was a superb family break. Having other adults around to help supervise Pudding takes the pressure off us, and Pudding always laps up the extra attention. Although we wouldn’t let him try the zipwire, pumpkin carving or outdoor hot-tub, he did come on some beautiful walks in the November sunshine and there was always the TV. I am so grateful that I have family living nearby who also don’t mind sharing their holidays with us.

I wrote about Martin House on our first wonderfully relaxing visit. This time was a bit different as we decided to leave Pudding there after our first night, and head off for a trip to the National Space Centre. It meant that T had undivided parental attention for 30 hours which he certainly appreciated. I also noticed how much more we could enjoy him without having to negotiate the sometimes difficult interactions between the boys. And although I thought about Pudding often and worried about things like bedtimes, I had complete confidence that he would be very well looked after. Yet again, I felt lucky that we have access to this resource.

We have a stable family life, a roof over our heads and enough money to live comfortably. We are lucky to have one gorgeous son with no medical issues and despite his MPS, Pudding thankfully has very little in the way of day-to-day health needs.

During the time that we were at Martin House, we did of course see children who are far more poorly than Pudding. It’s a hospice after all. But despite this, it is not a sad place. And in fact, talking to other parents and seeing the matter-of-fact dealings of suction tubes and peg feeds is sort of reassuring. It helps me think I could deal with that if I need to.

Unlike many families we haven’t had to fight. So many others – not just those with MPS – struggle to get diagnosis, struggle for access to services, have to fight for school provision, fight for EHCPs, DLA and Blue Badges (see glossary). Although the forms and medical stuff still take it out of me, I feel lucky that our path is easier than some.

Of course, it isn’t always easy to focus on the positives. But I know things could be so much worse for us, so right now I’m living in Luckyville.

Surviving

Did you enjoy the holidays? As the beginning of the new school year is upon us I’m looking back on the last five or six weeks and trying to work out the answer to that question.

Pudding running towards camera. His big brother is behind him with hands on his shoulders.I suppose the truth is that I haven’t quite retained the boundless optimism of the beginning of the holidays. I’ve also not sunk back into the hole! But as with many SEND parents (excepting those whose children suffer from anxiety) I’m going to be very grateful for the start of term.

So how did I get on? Here is my full-proof method for surviving the long holidays:

Have lovely friends and family. As I said before, we didn’t book any holiday away. In the first week the boys and I went to stay with Grandma and Grandad. And last week we landed on some super friends in Gloucestershire who gave us the run of their house while they were away. We had very few instructions apart from ‘feed the cats’ and ‘we’re not precious about anything in the house’. In other words, don’t worry too much if Pudding breaks anything! He had a super time, exploring a whole new house and garden and terrorising the cats (hope they’ve recovered) while we could relax

Respite.  We had five 6-hour days when Pudding was looked after by an experienced short breaks worker. I know I’m lucky to get this. Some families don’t. Dealing with a Pudding is exhausting at the best of times, let alone day in, day out for 6 weeks. But I do sometimes wonder if it is just me not being up to the job. So it was with a certain amount of satisfaction that I heard at pick up time ‘Oo, I’m ready for bed now!’ from someone else. These days allowed T and I to get up to adventures that Pudding just couldn’t have joined in – from making natural sculptures in the woods, to a full day out at Lightwater Valley. I found it a really relaxing break and T certainly appreciated not having his fun curtailed by his sibling.

Divide and Rule. Much as I would love to have picture-postcard, perfect family days out where we happily do a range of activities together….. Well, it’s just not possible. Pudding can’t run very far before getting tired, so often needs to go in his buggy. And even then, he complains more these days. So after a bit of an explore somewhere new, perhaps some football, he is ready to leave. There is no bargaining or bribery possible – the promise of an icecream if he waits patiently for a while means nothing to him. Which means that T is often dragged away from whatever he has set his heart on doing. The answer we’ve found, like many SEND families before us, is simply to split up. One parent supervises T, while the other gets the job of pushing the buggy round (or sitting in a cafe!). Not always ideal, but it works in a fashion.

Cut yourself some slack. TV. It’s been on far more than I ever would have thought my kind of parenting would allow. But hey, maybe I’m finally getting better at adjusting my expectations. I may not be a perfect parent, but Pudding doesn’t seem to be complaining. Well…not much anyway!

Now the only question is, how will I be spending the first day they’re back at school? I’d like to say taking a few deep breaths, drinking hot chocolate and relaxing in a nice bubble bath. But we’ve got workmen round drilling lots of holes in the walls, so maybe not.

Paradise

I have a neck!

(How stupid does that sound? Nearly 46 years on this planet and she’s only just realised…)

The truth is I’ve been walking around since Monday morning like a swan with an elegant long neck rising effortlessly out from my shoulders. I had forgotten what feeling truly relaxed is like. The norm for me had become anxiety and stress, both emotional and physical – pushing the buggy, coercing a reluctant child up the stairs, carrying the heavy weight of an MPS diagnosis and all that it entails.

So what has changed? The paradise on earth that is Martin House Children’s Hospice.

When Pudding was first diagnosed, several people mentioned Martin House to me, but I pushed that idea away as fast and far as I could. To me, a hospice meant dying children and that was something I did not want to think about. Even when it was explained to me that many families go there for respite rather than end of life care, there was a barrier that I just couldn’t cross; it was one more thing on the path to acceptance of a life-limiting condition.

Earlier this year though, I was finally ready to take that step and got in touch. We went for a first look round in May, and ever since T has been asking ‘When are we going back to Martin House?’

Hubby looking out from a balcony at the grounds of Martin House at several rabbits on the lawnIt’s hard to describe what a special place it is. Sitting here I’m stuck for words. But I can close my eyes and see… Rabbits on the lawn. Jars full of cake. Paths that twist and turn through peaceful gardens. Communal tables set out for dinner. A rainbow of children’s faces on the wall. A bench in the sunlight. And I can hear shrieks of delight from T as he plays in the water with other siblings.  Birdsong. The patter of Pudding’s feet when he takes a break from TV to run to me for a cuddle.

A carer is allocated to each of the children to give parents a break from the constant monitoring of vital signs or medications. In our case, it was freedom from the need to be on constant high alert. It’s only when we got a break from that – a proper break, not just a few hours while he’s at school or asleep – that I realised just how wearing it is.

It was odd at first to let go. After all it’s second nature for me to jump out of my chair to follow him when he runs. I constantly assess his mood to second guess whether he’s about to hit anyone or throw something. But for the whole weekend someone else was there to do that. They even sat with him at meal-times so we could eat our food without having to persuade him to eat or stop him from cramming too much in.

A path winding through some trees and under a pergola. Hospice buildings in the background.So I sat in the sunshine and read a book, played with T and the other siblings, and chatted to other parents. I was so relaxed I barely took any pictures.

As I expected, we saw the difficult stuff too. At least one of the children staying didn’t have much longer in this world. And while we there a group of bereaved siblings were having a get-together. But the atmosphere is definitely not a sad one. It’s a welcome and warmth. The feeling of being well looked after and peace. A little slice of paradise. A weekend that meant more to us than I thought any holiday could.

As we drove away on Monday morning back to normal life, T asked ‘When are we going back?’

As soon as possible please….!

(Martin House survives on the kindness of volunteers and donations. If you would like to contribute to their wonderful support of families dealing with a life-limiting condition, you can do so here.)

Kindness

So you may have gathered that the last few weeks haven’t been the easiest – sickness bugs, half term, surgery, virtual house arrest after surgery (and don’t even mention politics!). But I’ve been carried through by the kindness of … well, almost everyone.

Of course, there will always be the exceptions, the ones who judge or who don’t make the effort to consider that not all children come from the same mould. We had one of those in half term when we visited a cathedral. I approached the information desk to ask for the disabled exit (because yes, Pudding was not happy, and yes, he was making sure everyone knew about it). The lady turned round from a conversation with a smile that didn’t reach her eyes and told him to ‘Shush. Please!’ before waving us to a lift which wasn’t what we wanted.

But I won’t waste my ire on people like her. This post is about the good ones, the people who show their kindness through everyday actions. Like the other staff there who went out of their way to try and engage Pudding in activities despite his difficult behaviour. Maybe a job to them but welcome inclusion to me.

The very next day the boys and I were in the playground at a stately home. After spending ten minutes trying to escape, of course Pudding didn’t want to leave when the transport came. When he decides against something it is becoming more and more difficult for me to manage him physically. He is now half my weight and very strong. I was rescued by a complete stranger who offered to take the buggy while I persuaded /coerced Pudding to move. Such a little thing for someone to do, but such a help to me.

Pudding in a check shirt frowning slightly at the camera.We met another friend there and while we followed a trail around the gardens, she said to me, ‘I’ll push the buggy for a bit’. Such a little thing for someone to do, but a welcome rest for me. (He’s heavy!)

One of the added problems about Pudding’s appointments in Manchester is having to work out what happens with T while we’re away. The day of surgery, a friend offered to pick him up from school, take him to the earlier gym class her son goes to, and then wait around until T’s class had finished. Yet another friend picked him up from school the next day and held onto him for an extra hour when we were delayed getting back. A short(ish) time for them, but a release from worry for me.

MPS has brought us so many trials and tribulations, and a world that I wish I had never heard about. But it has also brought the ability to see a side of people that I might not really have been aware of otherwise. My everyday heroes. Not just family or long-term friends who are bound to us with ties of blood and years of shared experience, but people who’ve got to know us since Pudding’s diagnosis and who haven’t run a mile at the sight of an unconventional set-up. Not forgetting the kindness of strangers.

Kindness matters. It really does make a difference. Next time you see someone struggling and wonder whether you should intervene, just offer that help. It might be a small inconvenience to you, but could mean the world to them.