Something more unusual today: two different creations both designed to raise a little more awareness of MPS in the wider world.

Firstly, Melissa Hogan, the mother of another boy with Hunter Syndrome has co-written a song that perfectly describes what our lives are like. The song called ‘Alive’ has reached the final of an international competition (Country category) and it needs your vote. You can vote here every day until the 15th April. The video is on Youtube and has lots of pictures of other Hunters boys – you may see some resemblances between them and Pudding.

Second, some of you may have seen this already, but I sometimes enter a writing competition called Hour of Writes where you have an hour to respond to a particular prompt each week. I have been doing my best to write about something other than MPS! However, a couple of months back the theme was Youth of Today and I couldn’t avoid it. This entry was fairly well-received:

I see them
Loping along in packs
Long legs eating up the asphalt.

I see flocks of them
Swooping across the road on two wheels
Heedless of oncoming traffic.

I scowl and want to shout Take more care!
Life is more precious than they realise.

I see them
Huddling on a freezing corner
Dragging on a cigarette
Hurling insults and obscenities at each other.

I see them
Prowling their territory
Preening and edging around the other sex.

I warm to these signs of frailty
The first fumbling steps in the courtship dance.

I see them
Moving aside for our buggy
Glancing at my son
as he gabbles an incomprehensible greeting.

Do they see his otherness
A simple mistake in tangles of DNA that has diverted his future
Waste products building up in this body I love so much
Grinding his brain to a halt?

I wish I could see further
See him strutting with the other lads
Being teased by a girl.

I wish I could see a woman like me
watching him with disapproval and tutting
Muttering under her breath, ‘Youth of today…!’

 

Over the Easter weekend we spent five nights away in the best hotel. The hotel of Mum and Dad.

When I said we were staying for five nights, I saw the look of consternation on their faces, and I must admit to feeling a teensy bit guilty. But they didn’t object out loud and I didn’t change our plans.

I love the idea of holidays, I really do. The planning, the hunting down of a bargain, finding the perfect cottage in the perfect location, good places nearby to visit, and so on. But with Pudding in tow, things are never quite as idyllic as I imagine. When you arrive, there’s that scan you have to do to check for hazards. You move any ornaments out of reach . You then move more that he’s just proved he can still reach. You realise that his travel cot won’t fit in the place you’d planned, requiring a chest of drawers to be heaved from one room to another. There’s still all the cooking and washing up to be done. Or if you’re in a hotel, there’s the negotiation of public spaces, catching him before he makes a dash through the lift’s closing doors, and the joy of turning out all the lights and spending the evening in darkness to keep his bedtime routine going.

At my parents’ house, there is none of that to worry about. Yes, of course he immediately found the most breakable things, but we soon moved them. Yes, he started posting all the leaflets in the hall out through the letter-box, but at least it kept him busy for a bit. Yes, he did want to explore every cupboard and go through every door. Yes, he wouldn’t even sit still through a TV programme (unheard of!). But he adored the different toys to play with, the huge garden for football and the attention from two extra adults. And no, even Grandad couldn’t resist the continual shouts of ‘Dave! Dave! Ball!’ when he was trying to get some gardening done…

As for me – no washing, no dishes, no cooking. We did offer a couple of times but were told in no uncertain terms to relax. So relax we did. We had some nice outings. There was sunshine and spring flowers. I played loads of games with Twiglet. I read the paper. I even did some of the cryptic crossword, and I haven’t done that for years.

Sometimes I worry that people will think I’m over-exaggerating things, making our lives sound harder than they really are. All children can be challenging, right? I know. With our ‘normal’ child, we’ve had our fair share of temper tantrums and other struggles. Right now, we’re dealing with a pretty intense phase of defiance that is enough to prick me into a state of bitter sarcasm many days of the week. So I find it hard to articulate what life is really like with Pudding.

But I think over these few days, I finally worked out what it is. There are many moments of joy. I love the way he flings himself at either of us, shouting, ‘Dah-ddy!’ and grinning widely.  I love the way he is still learning things – slowly, but it’s progress nonetheless. But I can never really relax when he’s around. I am always aware of what danger he could cause himself or others. Even when he’s at playgroup, I’m often dealing with the admin side of his needs. It’s unrelenting and possibly never-ending. Which is why the occasional chance to have the pressure taken off a little is so important.

I guess, even though I’m now in my 40s, I haven’t really grown out of my need to be mothered myself once in a while. Thank you, parents. I never appreciated you enough when I was younger. But I do now, oh, how I do!

I suppose Easter is possibly a contentious time for me to be writing about faith, but hopefully anyone reading this will understand that I certainly do not intend to offend. In the Christian calendar it is a time of hope and renewal, and although for me it’s mainly about the family time and the chocolate, it has got me thinking this year.

I’ve been an atheist for as long as I can remember. In a school RE lesson one time, another girl looked at me in bewilderment and asked, ‘How can you not believe?’ My bewilderment was just as strong; my immediate response being, ‘But how can you?’ And nothing in the interim has changed my mind on that one.

When Pudding’s paediatrician first mentioned the possibility of MPS, I of course went trawling through the internet for more information. The first words I found were ‘progressive’ and ‘life-limiting’, enough to send me reeling from the computer. When the diagnosis was confirmed I couldn’t stay away from the search engines; I was desperate for information, particularly information that could give me some hope, some belief that things couldn’t really be that bad. I came across blogs from the US, and Facebook groups talking about MPS children gaining their angel wings. I must admit I wanted to run a mile – their whole life experience was just so far removed from my own upbringing in a fairly secular society.

I can’t comprehend the thought of a god or gods that would condemn children to die of appalling diseases; to allow families and communities to suffer.

Time has moved on since those first horrible months, and I have become friends on Facebook with many who have different views to me. The lovely Geraldine Renton, for instance, has expressed her own beliefs beautifully, and while I cannot share these views I can understand them. And perhaps feel a little jealous that people have this strength to lean on.

So, when someone I barely know stopped me the other day to say, ‘You’re the lady who shaved your hair because of your son, aren’t you? I’ve been praying for you ever since.’ I didn’t brush it aside, as I would have been inclined to before. I smiled and said thank you. After all, what matters is that people care – why worry if they just express it in different ways?

As for me, I guess I do have some beliefs that I can lean on. I may not have faith in a god, but I do have faith in the good that human nature can do. I have faith in the wonderful doctors and nurses who work so hard to help us. I have faith in scientists working on the future of gene therapy and the like. I have faith that we will cope with this, whatever this is.

Inclusion has been much on my mind this week.

A while back we made the decision to send Pudding to mainstream school when he starts full-time in September. Hopefully this will prove to be the right decision for us, but in order for it to work he would need full-time support in place. Without proper supervision he’d turn the place upside down in very short order. Oh, and I assume most people would be impressed with his throwing skills until the hard object hits them square in the face….

This week we have a meeting to discuss getting him onto an Education and Health Care Plan, which is the format that replaced the old Statement of Special Educational Needs. (This is after we sent off reams of information in December which was discussed by a panel to decide whether he can be assessed for the EHCP. Tortuous, eh?) So I’m girding my loins for another meeting where we have to focus on what he cannot do, and what the future may throw up.

On a much more positive note for this week, Pudding was invited to a birthday party for the first time. It’s a rite of passage for many children, but especially important to those with special needs. As a parent I’m sure many of us worry that our child will be included in these sort of events or overlooked. No worries there – with a bouncy castle, balls to kick around and plenty of pizza, Pudding had a whale of a time.

And during our ERT infusion last week there was another important step towards ensuring that he doesn’t always have to miss out on the fun things in life. He’s never been keen on using the shoulder bag that comes with the infusion pump; until now while it’s going we’ve had to keep a close eye out and leap to grab the bag if he makes a run for it. This time we tried a little rucksack that we’ve had for a while (bubble wrap and tape to try to stop it pressing on the port and gripper needle!). It worked brilliantly and meant that he could be far more independent and even enjoyed playing ball for a bit during the infusion. Although he’s not sensible enough to trust further afield for now, when the weather is better we will now be able to go out in the garden if we want. I may yet get it looking nice this summer. Hoorah!

Well, not quite, but something did make me very happy today.

I’ve found it difficult staying sane this last week. Being pretty much house-bound with two boys coughing through the night and whingey during the day is not designed to show me at my best. I freely admit, sometimes I think I am not cut out to be a mother. The image of a woman who tirelessly gets up in the middle of the night and is still smiling and patient through the day? Well…if she exists, it ain’t in this house.

Twiglet is mostly better. At least it’s just a cough hanging on now rather than a temperature, and is back at school. Pudding was off playgroup again yesterday but I decided he was ok for gym club today.

Yesterday I’d been very productive and while he was settled in front of the TV, managed to sort out all the piles of cardboard boxes that were threatening to take over the shed. So today’s job was to take them to the tip on the way to gym. That meant having Pudding’s car seat in the front as the back seat/boot were full of junk. I thought he’d be happy and excited to be there for this short drive. He was. Until he decided that what he really wanted to do was pull on the gearstick.

Not quite sure why I didn’t realise this would happen. Needless to say, he doesn’t deal very well with the word, ‘No!’ even when it is screamed at him while driving round a roundabout. It was not a fun trip. And he was still crying when we got to gym club, particularly as we were five minutes early so had to sit at the side and wait for our turn.

As soon as he was released he ran straight for the foam pit and bent his knees, arms back, looking like he was about to do a standing jump. Normally this is followed by him standing up, sticking one leg out in front of him and leaning forward, rather like a cartoon character walking off the edge of a cliff. Falling, with style. But this time he actually did it: an honest-to-goodness, two feet off the floor at the same time, full-on proper jump!

I was over the moon. I may possibly even have whooped (just a little one, I am English, after all)! I may not be a perfect mum, but my children can make me perfectly happy every so often…

OK, so it’s not the most inspiring title for a blog post ever, but bear with me!

Ever since Pudding was little I’ve had problems cutting his toenails. Admittedly I may not be the most expert nail cutter. I am, after all, the one who accidentally drew blood when trying to do Twiglet’s nails at only a few months. But Pudding’s were definitely a challenge; chubby toes seeming to overwhelm his tiny triangular nails. As he grew older, the big toes developed a tendency to grow in, and the rest curved under, moulding themselves to the shape of the toes such that it became difficult to even get the clippers under them.

Of course it wasn’t a huge problem; just one more little thing alongside his webbed toes, tongue tie, etc, that made me think he wasn’t put together quite right. We did get a referral to the podiatry service, but other than advice to ‘keep them short’ nothing more came of it.

Then last week, following a hunch, I posted about it on one of the MPS groups I’m a member of. Within a couple of hours, I had 13 comments from other parents all saying ‘Yes, we have this too!’

Of course, it’s not a scientific survey; probably not all MPS patients will have this issue and many without MPS will have. (Described as ‘clubbing’ it can be due to a reduction of oxygen in the blood, for instance because of heart or lung problems, and has also been reported in other conditions such as coeliac disease).

But for some reason it made me feel so lighthearted to have this interaction. Parents at the school gate quite often get to have those ‘Oh god, yes, me too!’ conversations about normal everyday kid things. For MPS parents though, that sort of thing just isn’t possible. The likelihood of living close to another family is fairly slim.

It is therefore one of the joys of this internet age to find a group like this online. All the bad things about the internet – the online bullying, trolling, and so on – can at least be balanced out a bit. Because there is nothing that says ‘I belong!’ quite like a group of parents and patients from all over the world bonding over a discussion about toenails.

The best laid schemes of mice and men…

Well I thought everything was sorted regarding our next visit to Manchester for Pudding’s trial medication. Hubby was going to come with us for this second time, to help me with the drive between hospital and hotel among other things. Someone would be picking Twiglet up from school tomorrow for gym club and then deliver him to Sister for the next two nights. After school club sorted.

Then last week, Hubby came down with a cold and I started praying that Pudding wouldn’t catch it. If he’s unwell, his sensitivity to the normal weekly infusions is heightened – but at least if his temperature goes up during ERT it can be switched off, as happened previously. With the injection of enzyme into the spinal fluid, once it’s in, it’s in, and any reaction would have to be managed with more medication.

Pudding has now succumbed to a cold, but seems generally ok apart from a runny nose. Still ok for Manchester?

But Hubby is now suffering from a nasty bug, and I doubt whether turning up at a hospital like that is a good idea. Twiglet’s cough has worsened and he had a temperature of 40 degrees earlier (not that I always believe the accuracy of my thermometer). Unless we see a miraculous recovery by morning, school is unlikely.

I know I’ve said it before, but I hate how since MPS reared its ugly head, the littlest things take on so much more significance. Ho hum!

I went out for a meal on Monday with a lovely friend. So nice to get out and have a good chat. She mentioned something about the difficulty of diagnosis and how you need to get to that stage where it isn’t the first thing you think about when you wake up and the last thing at night. Very true and insightful.

It made me realise how far we have come since those earliest dark days. Yes, I do obsess over it all more than I possibly should. And some days anxiety settles in my stomach for no discernible reason. But often life just continues.

The calendar is marked out with the usual routine of preschool, gym club and weekly ERT (enzyme infusions). Next week we will be back in Manchester for the next dose of trial medicine. Even that feels like it will be fairly routine now; we know the ward well, and what to expect from the day there.

We regularly have support from some wonderful people – our Healthcare at Home nurses, staff at preschool, our portage worker to name but a few – and we should be accessing some respite hours soon. Hopefully that will mean that time to concentrate on Twiglet’s needs will become part of our routine too.

We’re in that strange in-between-land; Pudding has a serious genetic condition but he is not a sick child. Spring is coming and I have so much to be grateful for.

I frequently struggle to articulate what Pudding is really like. How can  I describe such a gorgeous little lump adequately? So today’s post is a little bit different. I’ve let some other people describe him:

Twiglet (nearly 6) says,
He is very friendly and cute. He’s not like everyone else’s little brother because he’s got Hunters, and the Hunters makes him hit a lot. That makes me feel sad. He gives big cuddles a lot. He likes bananas.

Nephew (7) says,

Danny likes watching TV and eating. He has got Hunters so he’s different from other children. He acts like a baby but he’s a toddler. I like him because he’s cute.

Niece (9) says,

He’s fun, cute and lively. Whenever you’re sad he always puts a smile on your face. He loves food. He loves telly. He likes playing football in the garden. He does funny things like calling everyone Dave. In the future I think he’ll be just the same as he is now, only older and not quite as cute. When my Dad picks me up I like it because Pudding always gives him something random from around the room. I sometimes worry that his new medicine will stop him being like Pudding.

(I asked them all what they thought of Pudding at separate times so they didn’t hear or copy each other’s reply. I love that they all independently used the word ‘cute’!)

 

 

Who am I? Who am I?  Not Jean ValJean, that’s for sure. But when I was listening to Les Miserables the other day, I realised that he had a point. We all need to be defined by something, and that something is ourselves.

As with many mothers with young children I ended up subsuming my own identity a little into the daily grind of feeding and nappies and baby groups and weaning and nappies and …well, you get the picture. I was grateful that I didn’t have to juggle work and parenting, but I did lose something because of that. The world of work, although often stressful and with its own challenges can offer things too; a pay packet at the end of the month, a thank you, a simple acknowledgement of a task completed on time. .

When my youngest passed the age of two I expected to be looking outwards again, planning a return to work, finding myself again after the years of baby-fugged-brain. Then his development delay became increasingly obvious and just as things should have started becoming easier, I found myself struggling even more. Hunter Syndrome knocked a couple more punches in, and has dominated my life for the last nine months now.

Last week, at a writers’ group meeting I went to, we were asked to give our name and say something interesting about ourselves. It went round the table with people mentioning working in prisons, boxing for England and other fantastic things. Then it got to me. Who am I? There was so much I could have said, but instead my mouth opened and I blurted out that my son has a genetic disease.

I could have kicked myself. Yes, it’s highly important to me at the moment, and I find it hard to think about much else, let alone write about anything else. But Hunter Syndrome IS NOT ME! I am not defined by my son’s disease. I need to learn to step away from it sometimes, and find myself again.

So here is some of what I could have said. I have degrees in both Chinese and chiropractic. I love baking and made my brother’s wedding cake. I received a marriage proposal on a train in China. I had two home births. I was the only person in my class at school who answered yes to the question ‘Would you live on a desert island by yourself’. I once sliced the side of my finger off in a bacon slicer when I worked at a supermarket.

Wow, it’s a pretty hard exercise to try and think of something interesting. But it has taught me a useful lesson. I need to make more of an effort to be me. Do some yoga. Get back to writing the novel. Clear out my wardrobe. Anything.

Hold me to it?