Old Age

I often feel old these days.

Let’s face it, I’ve always been a bit of an old fuddy-duddy, but lately it seems to be catching up with me physically. I’m not as flexible as I used to be. Hubby laughs at me when I get up off the sofa and have to hobble for a few paces before I can straighten up fully.

I can still race after Pudding when I need to. Other parents will attest to that after seeing me go from 0-60 in two seconds when he’s about to head out the playground gate. But some days it’s an effort.

I turned 40 while I was pregnant with Pudding, and do wonder if I’d find it easier in a younger body. Lack of sleep really does me in – even nights when I’m only vaguely aware of him chatting can leave me exhausted the next day. And bruises I get from him last for weeks.

You might think that with age comes more experience, conferring an advantage in the particular battles involved in raising a child with special needs. But I’m privileged to know a number of younger MPS mums who are doing a bloody marvellous job at just that (waves hello – you know who you are!).

Of course I’ve often wondered if my age is actually the reason for Pudding having MPS. Hunter Syndrome is the only x-linked version of MPS. This means it is passed down on the ‘x’ chromosone from the mother only. I don’t have the gene deletion on my own DNA so Pudding’s case is from a spontaneous mutuation.

Of course I was aware as my single, non-childbearing years continued to pass that my fertility was declining. The ‘cliff-edge’ diagrams and comments about ‘selfish women wanting to delay children due to their careers’ are thrown at you by the media. The link between older mothers and increased likelihood of having a child with Downs Syndrome is well documented and I was prepared for that outcome when I was pregnant. But I’ve never actually dared to ask the question about a similar link in MPS – whether a spontaneous mutation is more likely as the mother’s age increases. I don’t think I really want to know the answer. It’s done now. I can’t change what’s happened. I always expected to have children much earlier but never met the right man until Hubby.

My worry now is for the future. As we age, what will happen to Pudding? Who will care for him and see that he is well looked after? With new treatments becoming available maybe he will beat the odds and kick MPS in the butt. But if he makes it to 30 years old, I’ll be 70. Current attitudes to disability and long-term care available in this country don’t exactly fill me with optimism.

Sometimes the thought of losing him earlier is less scary.

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.

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.

 

 

Halloween

Tis the season of spooks and sickness bugs, nights drawing in and Halloween.

Hubby is still recovering from the bug that Pudding and I both had so he wasn’t up to coming out with us. It was glorious weather yesterday but sometimes I find it downright scary to take both the boys out by myself. I gritted my teeth and headed off to Lotherton Hall. They always go all out for Halloween there and T was really keen to do the spooky scarecrow trail.

I was all geared up for the more terrifying aspects – stares from other children, chasing Pudding when he makes a bid for freedom, struggling to push the buggy over uneven surfaces, the nightmare of finding a suitable place to change his nappy…

After a morning of losing my temper, shouting and generally being a grumpy Mummy from Hell, I was NOT looking forward to it.

But…

It all went rather well. T was brilliantly helpful pushing the buggy while I chased Pudding, helping me with the lift and generally being patient. We found all the scarecrows. Pudding looked rather fetching in his new hi-vis jacket. I didn’t get any officious persons objecting to us taking the buggy into the house (yes, some people in other places REALLY want to make it difficult). And best of all was the loo!

Normally, I just find a discrete corner out of the way to do a nappy change al fresco – much nicer than lying him down on a toilet floor. But not in this weather. I thought the disabled loo would probably have the best chance of having a large enough, clean enough floor space, so tracked down the key from the cafe.

I opened the door, and was delighted to find a full-sized adult changing bench with hoist above it (not that we need that bit). I simply hadn’t realised that the facilities there were a proper Changing Places toilet – the gold standard for those who can’t use the usual toilet facilities. T didn’t quite share my vocal enthusiasm and chose to wait outside while I changed Pudding in glorious comfort, not having to bend over him on the floor or worry about the hygiene.

Only problem is, I could come to expect this standard, and there simply aren’t enough of them out there….

 

 

The necessary

We’re back in Manchester again. Clinical trial dosing day. Sometimes it seems to come round really quickly. And today I really didn’t want to come.

There’s a bug doing the rounds at the moment. Pudding had it last week and very kindly passed it onto me. It wiped me out completely on Friday (Hubby said that he knew I was ill as I wasn’t even going on Facebook) and I expected to feel better the next day. But I didn’t. Or the next day. Or Monday. No awful symptoms, just feeling bloated and spacey and draggingly tired.

The thought of setting off on the train and spending a long day in hospital today was about as welcome as…well I’m sure you can think of something. I checked with the ward hoping that they would say not to come, but they didn’t.

A couple of people asked whether I’d be better just staying at home and missing the dose, and oh I was so tempted. But I couldn’t ignore that little voice in my head. The one that reminds me how important this treatment is. The one that whispers how lucky we are. The one that warns we may not have too many other doses left to us if it doesn’t get approved or funded.

So I’m here. And coping.

We do what we have to, don’t we? All parents do. We get out of bed. We make sure they’re clean and fed. We nag them about homework. We stand by the side of a pitch in the rain. We travel across the country. And we hold them down for needles. Our own needs sometimes just have to take second place.

We do what is necessary.

Gym

Many people consider going to the gym as a luxury. Not me.

Anyone who knows me will vouch for the fact that I’m not a natural exerciser. I’m not completely sedentary, but the idea of going for a run (heaven forbid!) makes me shudder. But I joined a gym in January and have defied the odds by actually continuing to go.

Last week, I got a slight cold and the lack of sleep led to my back grumbling. If you’ve ever had back pain before you’ll know how awful it can be. The idea of being crippled by that intense pain again was scary. I wasn’t just thinking about the impact on me, though that was a big issue; I’ve spent months recovering in the past while living on my own, which of course wasn’t much fun.

If I was to suffer pain like that again now, it would affect so much more though. If I was in pain who would push the heavy buggy to and from school? How could I drive Pudding to appointments and hold him still for the needles? How could I run after him in the playground, or wrestle him to the ground for a nappy change?

What happens when a carer is no longer able to care? I know Hubby would have done what he could but he has a full-time job. And what happens to those carers who don’t have anyone else to rely on?

Pudding weighs over 4 stone now and looking after him is hard physical work sometimes, particularly when I’m only 8.5 stone myself. My only solution is to make sure I’m as fit and strong as possible. Hence the gym. It helps that the place I go to is full of friendly faces and has a pool and classes as well, so it’s not just slogging on the gym floor. (I’m easily bored!)

The gym for me is not a luxury, it’s a physical necessity. And this week I realised that it’s even more than that. My mood took a bit of a nose-dive with the back pain, and even when I started moving better my mood didn’t. Eventually I forced myself out to do an easy work-out on the treadmill, etc, and I felt so much better all round. Yes, I know that exercise releasing happy endorphins is hardly a revelation yet it makes a difference finally realising it for yourself.

I’ll never be a proper gym bunny but I can admit that sometimes I do quite enjoy it! Maybe some day I may even get round to replacing my embarrassingly tatty trainers…

Marriage

Weddings are easy. I’ve never quite understood all the stress about them. We had a lovely little register office ceremony followed by a meal at a local restaurant for good friends and family.

Marriage though, that’s the hard bit. Marriage, and any other long-term committed relationship, can be full of little niggles. ‘Why doesn’t she ever remember to lock the shed?’ ‘Why can’t he hang his towel up properly?’ ‘She talks in her sleep.’ ‘Oh my word, will his snoring ever stop?’

Ours became harder after having kids. Routines get interrupted by small, demanding bodies and lack of sleep isn’t known for improving rational conversation. Relaxed weekend mornings become a thing of the past. And we weren’t the first couple to realise this new life makes a difference. Many parents struggle to find time for each other.

So when you add a disabled child into the mix and all the emotional stress of a life-limiting disorder, it’s little wonder that many marriages break under the strain. Studies have shown that the risk of divorce or separation is higher for those parenting a disabled child.

I think we’ve both got better recently at looking after ourselves. Hubby has taken to meditating and doing brilliantly at it. (Sometime soon I expect I’ll blink and he’ll have turned into a Buddhist monk.) But amidst the self-care we have to remember to think about each other too.

Yesterday Hubby had a day off work. I was full of cold and very tempted just to go back to bed, but instead I made the effort and we went for a walk. I was so glad we did. The sun was shining and the wind blew away some of my fogginess. We chatted. We listened to the birdsong and laughed at the inescapable smell of cowpats. We took full advantage of the kissing gates. It was even warm enough to eat our lunch outside at the cafe.

Hubby and I have obviously had the occasional meal out or cinema trip once the kids are in bed. But making the time to go out together during the day, felt … more relaxed, more free, more like before having children. A reminder of how important we are to each other.

Recently I wrote a sort of love letter to our doctor, so I guess it’s only fair I write one to you too, Hubby.

I know I find it hard dealing with much of Pudding’s difficult behaviour and appointments myself. But you don’t have an easy life either – working full-time and also having the same emotional strains. I’m glad that we are able to talk things through and I admit that the reason why any relationship niggles don’t last too long is mostly down to you. You are so much better than me at building bridges.

In our marriage vows I promised to be there when you cry and to laugh at your worst jokes. I promised that when we disagree I would do my best to understand you and that when I was hurting I would try to tell you why. I’m not sure I do too well on some of these (you make the jokes one particularly difficult!) but I do think of what I promised quite often. And I do try.

You’re by no means perfect but then neither am I. No matter how grumpy or sulky I get, you should know that I’m glad I’m walking this path with you. I couldn’t have chosen a better husband or father, MPS or no MPS.

Love always, SB xx

 

For those in the same position looking for more advice and support, Contact (previously Contact a Family) has a great booklet on looking after your relationship while parenting a disabled child.

 

Service Station

Service stations are so easy, aren’t they? You pull off the motorway, park up, and pop in for a quick loo-stop or a cup of coffee.

Well that’s how it’s supposed to work anyway. But not if you’re in a car by yourself with Pudding. On our frequent trips to Manchester I try my hardest to avoid stopping and usually arrive absolutely bursting for a wee.

On my last trip I decided I couldn’t wait so stopped half-way. As I drove in, I ran through the options in my mind. I could get the buggy out, but that would take a while to unfold and he’d be cross at going from car to buggy and back to car without any freedom. Or I could leave the buggy in the boot and take the risk of going freestyle.

Luckily there was a parent and child space close to the entrance. (Between a couple who had just parked and were sauntering in, and a lady sitting drinking her coffee before pulling away. Don’t get me started on people without children who park in these spaces!). So I decided go for the risky option, and held tightly onto Pudding’s wrist as we crossed the road.

I played an enthusiastic chase and tickle game to get to the toilet quickly and chose a cubicle at the far end. Pudding wasn’t keen on going in but we squeezed round the door together. He is getting pretty good at undoing bolts but dumping the bag by the door and jamming my foot against it meant I wasn’t exposed to the public while doing my business.

Washing hands while also trying to hold onto a determined escapee is fairly impossible but the minimum requirements of hygiene were achieved by distracting him with the paper towels.

Luckily he didn’t need a nappy change himself as that would be a whole other problem. More service stations are now including Changing Places but they are still few and far between.

And then he was off. In the wrong direction. As usual I tried to make returning to the car sound really exciting. As usual he drew a few stares while lying down on the floor in answer to that.

Next he made a dash into WHSmith and this is where the whole buggy-free risk paid off. He stood in front of the huge cabinet of drinks and said, ‘Oh Wow!’ (For full Pudding-effect, try saying this in a similar voice to Wall-E). He then grabbed a Fruit Shoot and clasped it to his chest, looking at me with that irresistible cheeky smile. I caved and said he could have it.

I couldn’t believe what happened next. He pattered over to the till and waited till the person in front had paid, then handed it up to the lady. Showing not only that he knew we needed to pay for it, but also that he could identify where we had to go. Such a small thing for most children but I was so proud I was ready to burst. The lady serving probably thought I was crazy when I gushed about how wonderful he was. But I don’t care! My Pudding is wonderful and he is progressing in little ways.

Take that, Mucopolysaccharidosis! He is kicking your butt!

 

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