Magic

I believe in magic. I really do.

Not the magic from fantasy novels and films that I longed for as a teenager. I still love the escapism that those offer – the ability to vanquish enemies and do good in the world by concentrating your special powers. But I know that doesn’t exist.

I’m talking about a different kind of magic.

There is magic in so many aspects of life: a spring bud unfurling, birdsong soaring me skywards, sunshine on my face, music that has the power to raise goosebumps. The power of words that can tell me I’m wanted and loved. An unexpected gift. We just have to take the time to look for these and appreciate them to the full though I’m not always good at that.

One magic that works every time though is the power of one small boy’s smile.

Whatever mood I’m in, Pudding’s smile will sneak its way past my defences.

OLYMPUS DIGITAL CAMERAWhen I’m frustrated in the morning and am chasing a semi-naked boy round the house to get his trousers on before the school taxi arrives, he’ll look back at me and grin. Suddenly it’s not a chore, it’s a game.

When I’m trying to get the dinner ready while answering a thousand questions from T about Dr Who monsters and simultaneously sending an email, Pudding will worm his way between me and the work surface to look at the food. A hopeful smile and I cave, letting him have a tit-bit before he thunders back to the TV.

Half-asleep when I open his door in the morning, how can I help but respond to his excited grin when he pushes past me to throw himself onto our bed and his Daddy?

Even though I adore the peace and quiet of having the house to myself, the best bit of my day is watching him get out taxi and knowing the smile that lights up his face is just for me.

OLYMPUS DIGITAL CAMERAI love the games of tickle that Hubby plays with him, Pudding’s excited anticipation that breaks into deep chuckles; it makes me smile just thinking about them.

And then there are the times when I watch his face watching the TV. That beautiful slow smile spreading wider and wider until the magic shines out, wonderfully and irresistibly. His joy is bottled in my heart to buffer against the darker days.

There is nothing fake or forced about it – he simply wouldn’t know how.

The magic doesn’t just work on me; countless friends and strangers have been drawn in by it. He may not say hello or goodbye any more, or even acknowledge people as much as he used to. But one smile and it doesn’t matter at all.

Whatever he loses, I hope he never loses that. I know from other boys that their beautiful smile can stay long after much else has gone.

I believe in magic.

 

 

What do others see?

As I watch some children of my acquaintance grow up into teenagers, I see them hit that squirming self-conscious don’t-notice-me phase. I remember it so well. Some adolescents breeze through it and enter adulthood with barely a glance back. Others, like me, never seem to shake it off.

I’ve spent much of my life worrying about what others think of me. (Thanks very much to the bullies at school who shook my self-confidence so thoroughly.) Will people still like me if I say this? What do I look like in that? Etc, etc.

Sensitivity to what other people think got heightened when Pudding’s development delay first started becoming obvious. Any trip out the house became fraught with new worries. What did people see when they looked at him? At me?

A helicopter mother, hovering over her child as he climbed the steps, not giving him the space to do it himself? They could have no idea that his balance wasn’t great and that he had a permanent bump on his forehead from the number of times he had fallen.

Someone who is not concentrating on the conversation going on around her? Even when I let Pudding stray a bit further away from me I’m always watching – aware that at any moment he could hit another child or make a dash for the gate.

A lax parent? If they do see Pudding hitting out or running away they might think I should do more to discipline him. But often when I do tell him off it’s more for the benefit of others. ‘Bad’ behaviour in Pudding is often impulse and no amount of discipline will make a difference.

Too stand-offish? Seeing me standing by myself amongst groups of sociable parents, they could think ‘up herself’. Yet all my thoughts were on the latest clinical results, or concentrating hard on not crying on the school run.

Uncaring? A stranger on the train seeing me scrolling through my phone while Pudding is stuck in his chair watching his tablet and shouting out might expect me to do more to entertain him or keep him quiet. But they would never know that while their journey is briefly disturbed, this is yet another necessary journey to hospital and a film is the only way to keep him calm.

Pudding and me running along track through green spaceIt now happens less and less as I’ve developed a thicker skin on this journey (though I still hate the train situation!). It’s brought out my sarcastic side at times. In the supermarket recently I did say loudly to Pudding, ‘Don’t shout like that or people might stare!’ As we were leaving T very astutely said to me, ‘People were staring anyway, Mummy.’ Not after I said that, they didn’t!

Of course the vast majority of people probably don’t even give us a second thought, let alone think something negative. But my worries about people’s opinions will always be with me at some level, and those who sneer at Pudding or look askance at me will always hurt. But I know that most important are the opinions of those who are close to us. Those who know and love us for who we are. The nurses and play specialist who snuggle with him and insist on me taking a break. Friends who invite us out despite us not having made it out on the previous twenty-three occasions. Family who are always there for us.

 

Joy

With World Down Syndrome Day coming up (21st March – I’ll be wearing my odd socks!) I’ve been reading some lovely posts from parents about their children with Down Syndrome. And of course there’s the beautiful carpool karaoke video that has gone viral – have tissues to hand when watching!

Together they have reminded me of something important.

Being an older mum, I always knew that my chance of having a baby with Down Syndrome was higher. (And yes, I use the word ‘chance’, not risk.) I knew I would love my baby no matter what and having known a number of people with Down Syndrome, was not scared about the prospect of this new addition to our lives. I knew that there would be challenges along the way, but these would be outweighed by the positives.Research shows that the overwhelming majority of parents surveyed described their children with DS as great sources of love and pride.

At birth nothing appeared out of the ordinary and I thought nothing more of it. Fast forward three years and Pudding was diagnosed with Mucopolysaccharidosis, something I’d never been prepared for. Over the nearly three years since then, I have blogged about the ups and downs of living with this diagnosis.

Any regular readers will know there have been a lot of downs and I’ve always tried to be honest about how I’m feeling. And yet…and yet…writing about the negatives sometimes pushes out the positive. With Pudding, despite the challenging behaviour, stress over hospital visits and fears for the future, the positives are definitely there too.

I regularly post cute photos and little updates on Facebook but when blogging it always seems easier to put the hard stuff into words. The good stuff is so much more difficult to describe.

Pudding peering around a tree with a huge cheeky grin.How can I put into words the joy on his face this morning as he leapt onto the bed shouting, ‘Daaaddeee!’? How can I adequately get across what a cute little beetle he is as he lies back and waves his foot at me for his sock to be put on? The softness of his hand as he yanks it towards his tablet insisting that I help him? The funny little stampy dance that he does when he is excited by the attention he’s getting?

The low-points are mainly to do with external worries and my attitude to them but the high points are in my heart.

A number of Down Syndrome posts this week have emphasised the joy that comes with this life. Celebrating that joy, as many families will be on 21st March and throughout the year, is what our children deserve.

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.

Swinsty-031Yesterday 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.

My Valentine

Last year in February, the month of love, I wrote a post and quoted a Wet Wet Wet song ‘Love is all around me’. I read it again recently and I’ll be honest, I had a lump in my throat.

The love and support I’ve had from those around me have made so much difference since Pudding’s diagnosis. Without those family, friends and professionals who care for us in a variety of ways, I’m not sure I could have coped. (There are still times I don’t cope so well but that’s another story.)

This year I’ve been thinking more about the contrasts of love. Leaving Hubby out of it, the two great loves of my life are my boys. (Oh, and chocolate, mustn’t forget chocolate.) Yet, the love I feel them is not the same.

I look at T with pride and awe at his imagination, his bright mind and classic looks. I marvel at his growing independence and get so much enjoyment at sharing my old favourites and new experiences with him. My heart swells and I think it can’t be possible to love anyone as much as this.

And then I turn to Pudding who has MPS written all over his face and I melt all over again. Yes, I feel pride at every little achievement he makes, steps that would be easy for most other children but that are hard won for him. But my love for him is both softer and fiercer. I want to wrap him in my arms and protect him from the world. His chuckle can turn around a grey day and an unexpected kiss from him is worth a million dollars.

Sometimes after making me angry T has told me I love his brother more than him, and maybe other people think that is the case too. I don’t think it’s true – yes, I lose my temper with T and in the heat of the moment may not always like him. But I still love him. And with Pudding my feelings can be just as complicated by irritation and fear and sometimes boredom. My love for them is never in question – equal but vastly different. And when I catch them for a brief moment snuggled side by side on the sofa my world is complete. To quote this time from a musical I love – Blood Brothers – ‘They’re a pair, they go together.’

So, two Valentines this year for me. Well, ok Hubby, maybe three…

 

Mummy Times Two