Tag: family

A letter to Hunter Syndrome

On By huntersmumIn familyLeave a comment

We’ve been together a while, you and I. And like any relationship we’ve had our ups and downs. Well, quite a lot of downs if I’m being honest. I’ve written enough about your bad side for you to have got the message by now.

I suppose you could call it a toxic relationship. In a situation like this, the thing people are supposed to say is ‘You should just leave!’ But I can’t. We’re stuck together for now.

It’s our ten year anniversary today. Did you know? People celebrate all sorts of dates for their anniversary. It’s not going to be a wedding in our case. But is it the day I first heard your name? The day we were informally introduced? Because of course, you’ve been around much longer. From the day Pudding, my youngest son, was born. The day he was conceived even – when a faulty egg wrote that error into his DNA. So there you were in our lives – uninvited, unwanted, unknown. I’d like to have met you sooner, had the chance to end our relationship before it took too much hold. But so far, I don’t have the power to change history. So I count today as our anniversary. The day that we sat in the consultant’s office and it was made official that we were now an MPS family. The first of July 2015.

Like I said, I’ve written so much about you. About how much I hate you, because there is oh so much to hate. You’ve taken so much from us – the ability to lead a ‘normal’ family life and the prospect of watching our son grow up and leave home to name but two. My 13 year old should be upstairs playing computer games with his friends, demanding endless snacks to fuel his growing body. But he can’t play computer games, he doesn’t have friends, he can’t communicate what he wants and he hasn’t grown since he was six and a half. Instead he is on the sofa next to me complaining about something that I can’t help him with because as usual once I’ve tried all the things that I can help with, I’ve no idea what it is. Maybe he’s just complaining about you. I don’t blame him.

I have tried to be fair, of course. I’ve also written about what you have given us. It was you that sculpted those features of his – the high forehead, his adorable nose – every inch of this body that I adore. You gave him that mouth that was so ready to grin and shout hello to the world (before you stole his smile away). You gave him those eyes that look into my soul and his soft curled fingers that grab mine to use as his fiddle toy.

What I’ve not really thought about much before is what you’ve done to me. Oh, of course there was the tsunami of emotions – the anger, grief, anxiety, and so on. You’re probably fed up of me going on about them. But without you, I would not be the person I am today. Ten years of knowing you has changed me in so many ways (and it’s taken a year on a counselling course with lots of self-reflection to make me realise that!).

I have my faults, I know. But there are the good things too. You have taught me to parent differently, for both my boys. You have taught me patience, with myself and others. Oh gosh, it’s such a cliche – you have made me stronger. Resilient, even. I know now that I can face the worst and make it through. I share my pain so that others might feel less alone. These days I even dare to admit I can be brave when I need to be. Most of all, I have become comfortable with who I am – the whole me, flaws and all. Someone who is never going to break the mould or change the world, but who can sit with pain and take pleasure in simplicity.

I really quite like this version of me. So when it comes down to it, I guess what I’m trying to say is… thank you?

Ten years

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Ten years on this emotional roller coaster.

Ten years of appointments and tests.

Ten years of watching every change and symptom and wondering which are serious.

Ten years of hugging my boy just a little bit tighter because I don’t know how long we’ll have him.

Ten years of being able to spell mucopolysaccharidosis, when most people have never even heard of it.

Ten years of waiting.

The first years after diagnosis were truly awful. As a parent I can’t imagine anything worse than hearing that your child has a condition that will kill them. Looking back at early posts, I feel such compassion for the mother pouring out all that raw emotion on this blog. It’s compassion for myself of course, but it feels so long ago and like it was a different person. Because of course, nobody can live like that for ever.

There have been so many changes along the way – in my sweet Pudding, who can no longer run or talk or smile or even eat in the way he used to – but also in myself. And in this blog also. I rarely put anything on here now – finding it easier to update occasionally on Facebook.

Sometimes though, I still get the urge to write, to pour out all those emotions again. Writing can be therapy – a simple release of pent-up thoughts and feelings, sending them out into the web to hopefully receptive ears. It has got harder though. More complicated. At first after diagnosis my emotions were hard to deal with – anger, fear, confusion – but they were common reactions to grief, acceptable even. As time goes by though, I have sometimes held back, unsure whether I can share more difficult thoughts. Whether I can admit to not being or thinking as a mother should.

But as the family support worker at Martin House told me, none of this is supposed to happen. No parent is supposed to hear that their child will die. So is it any wonder that these thoughts come up?

You see, earlier this year Pudding was going through a difficult patch when he cried and cried and we didn’t know why and we couldn’t comfort him. Tears from your child do horrible things to you when you don’t know if they will ever end. I held his hand and he looked into my eyes and he continued to cry and I told my sweet sweet boy, ‘I want you to die’.

There you go. That’s the mother I am.

I could say that it was for him, that I didn’t want him to suffer any more. And of course I don’t. I’ve written before about how I want his end to be quick, with no pain. But in that moment of desperation (and I have to admit, still now as well) I wanted it for me too. However much I love my boy, however much I take comfort on the good days from his curly head resting on my shoulder and his quiet breathing, however much I live in the moment… ten years of waiting is too long.

I’ve always planned and researched the next stages that MPS will bring us, and have always struggled with the unknowns. And of course, the biggest unknown has always been ‘how long have we got?’. As he has slowly lost all his skills and heads into the final stages of this condition it feels more and more like a waiting game. And despite the peace and gentle joy of our day-to-day existence, that sometimes seems like the hardest part.

No parent should ever have to feel like this. So on MPS Awareness Day I lay out my heart to you and say we need funding. We need research. We need a cure.

(Photo from 2018. I think we all need a Pudding smile after that.)

Letting go

On By huntersmumIn family, Uncategorized11 Comments

I think over this Christmas period I’ve found the secret to happiness.

That is, I’ve found it before, but never really known how to articulate it. Letting go.

Letting go of the way things ‘should be done’. Letting go of preconceptions. Letting go of the idea that the opinion of strangers actually matters.

It’s a path that many parents of disabled children have to travel. We have all sorts of ideas about how parenting will be: the experiences from our own childhood that we remember and want to repeat with our children, and those that we want to avoid; the plans for their future – school, university, work, marriage. And then the slow realisation that things are going to be different to our expectations.

Maybe that journey goes faster for those with disabilities apparent from birth, I don’t know. With a condition like MPS though, when development is relatively normal at first, the realisation is slow. Painful at first.

Pudding with an enormous smile, watching TV

Over the last few years we’ve gradually adjusted to Pudding’s world and at Christmas I think it’s even more apparent how far we’ve come from what I would previously have planned. He is at his happiest with his beloved cartoon films on tap, and getting plenty of attention from people on his own terms. So that’s what we do. Christmas for us now is at home, with family visiting. TV stays on.  We don’t buy any presents for him – he doesn’t need anything and isn’t interested. This year, he even stayed asleep in bed until we’d opened all ours anyway. He definitely doesn’t feel that he’s missing out and I no longer feel guilty about that. I’m letting go!

How things ‘should’ be done really doesn’t matter. What matters is what makes Pudding, and us as a family, happy. This Christmas in our still-feeling-new house is probably one of the best I can remember. Letting go doesn’t mean giving in, or necessarily accepting second-best. Instead it’s developing new traditions and finding the joy in small things.

I don’t really make new year’s resolutions, though I do sometimes have aims for the year. But maybe this should be the theme for my year. Letting go, and finding the joy in small things. There are definitely worse ways to live.

I hope 2020 will bring each and every one of you some joy too. xxx

Circles

On By huntersmumIn family2 Comments

At this difficult time, my mind has been turning circles: reading up on options, moving towards a decision, learning more, wavering again. Yet strangely, I am finding it easier to deal with than the period just after diagnosis.

After diagnosis, when we first heard the word mucopolysaccharidosis, the bottom dropped out of our world. Learning that our little boy had a progressive, life-limiting condition left us reeling with shock, anger, grief, guilt…the lot.

You may have seen that diagram of a line showing what we think grief looks like, and then a tangled scribble saying this is what it is actually like. (Sorry, I don’t have a copy and wouldn’t know who to credit if I redrew it myself.) Well, that’s what it also feels like going through this journey. Emotions really aren’t linear. They’re complicated; overlapping and folding back in on themselves, circling round, revisiting you when you think you’re already done with that one. Ebbing and flowing. And over time, I’ve found them easier to deal with.

So even though we’re making this life and death decision for Pudding, it is with four years of experience behind us and without that paralysing shock punching into me every morning when I wake up unawares.

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My brain is full of ‘what if’s and consequences but I can still laugh with my friends and have funny conversations with T on the school run. Seemingly simple tasks like booking a taxi are sending my underlying anxiety into stomach-churning levels, but yet I still managed to sort out my hoe insurance ten days before the deadline. I may find it hard to concentrate on planning meals, but can still enjoy eating. I need a hot water bottle at night to ease those tense muscles, but my mind has mostly let me sleep.

The world keeps on turning and another aspect of my life has circled round to bring home how far I have come. I’m rehearsing for a play at the moment, and it’s being directed by the same person as the play I was in at diagnosis time. I have always loved acting – the chance to step away from real life and be someone else – but back then it was tough. Everyone was very supportive and there were numerous times when I had to leave the rehearsal room to go and cry by myself. But now? Well the play is pretty challenging, dealing with family relationships, love and loss and I am finding it quite cathartic in a way – I may not be able to shout and scream at MPS in real life, but I can channel that into my character.  And though they may know I have a disabled son, I doubt most of the cast have any idea of what we’re currently facing and that’s the way I’m happy for it to be. I would do anything for my Pudding, but I also need to be just me sometimes. An ordinary person doing ordinary things.

And as for the future…? We have probably made our decision, but we’re sitting with it for a while, to check that it feels right. All your messages of support and love for Pudding really has helped, so thank you.

Holiday challenges

On By huntersmumIn family3 Comments

Trying something new can be difficult. Challenging.

And when you’re making decisions on someone else’s behalf, it’s even easier to stick with the same old things. I know I’m guilty of that with Pudding. I know what he likes and often don’t branch away from the tried and tested. After all, I can’t ask him what he thinks.

CPWe’ve recently come back from a holiday at Center Parcs at Sherwood. A tried and tested formula for us. We go with the whole of my family (parents, Sister, Brother and their children) so there are lots of people around to chat with or do activities. I loved going before Pudding was diagnosed with MPS, and I’ve come to appreciate it even more since. Holidays can be challenging for us in many ways, but I know what we’re getting at Center Parcs. I’ve always found the staff to be really helpful and responsive regarding Pudding’s accessibility needs and they even have a Changing Places toilet in the Sports Centre with another one planned in their pool revamp.

While we’re there, all the other kids get to try out new activities, stretch themselves and their abilities. We find things they like and things they don’t, and that’s ok. And I need to remember that Pudding deserves that chance too.

This holiday I challenged myself and booked him on the Mini Captains Adventure – a boat ride for young children with one accompanying adult. I had suggested that we could draw straws to see who went with him, but no-one else was brave enough!

To be honest, I had no idea what he’d make of it. The success of an outing or activity can depend very much on his mood at the time (and whether he’s had something to eat). But I was prepared for pretty much anything short of being capsized.

It’s often the people we encounter that can make or break an experience for us. I often think Center Parcs have good customer care and the chap running this session was no exception. He was very happy to accept us on our terms and didn’t bat an eyelid when Pudding sat in his wheelchair watching his tablet throughout the safety briefing and instructions.

Grandma, Brother and Sister had come along with us for moral and physical support (very useful when it came to getting the chair across a short stretch of beach), but found it terribly funny when the instructions told us to visit each buoy in turn and note down which picture was on them. I very sensibly decided to ignore them and the instructions!

Pudding looking through the front window of a boat holding onto the steering wheel. I am sitting by him, arm just visible guiding the wheel too.Once the other three boats had set out (again, my decision) we got Pudding out of his chair and took him down onto the jetty. The massive smile on his face made it worthwhile even just for those few seconds. Manhandling him into the right place on the boat was a bit difficult but we did it. And then we set out onto the lake.

He loved turning the wheel, but wasn’t quite so keen on me actually steering so our progress on the water was somewhat erratic! He also loved the occasional person zooming past overhead on the zipwire. I had a feeling though that a good mood wouldn’t last too long, so after a while negotiated back to shore. Seeing his fan club there brought more massive smiles and we even got a picture of him holding his Captain’s graduation certificate.

It was probably the most expensive ten minutes he’s ever spent, but I don’t care. We tried something new!

(PS. I am not being paid for this post and haven’t been asked to promote it, so any advertising is entirely coincidental – just my opinion! Other holiday companies do exist, etc, etc)

MPS Parents

On By huntersmumIn fundraising, Uncategorized1 Comment

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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Interview with an MPS sibling

On By huntersmumIn family3 Comments

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

On By huntersmumIn family2 Comments

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

On By huntersmumIn family, medicalLeave a comment

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

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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.