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.