Reasons to be cheerful 24.3.17

I’m just going to dive straight in this week, so here goes:

Feeling the fear and doing it anyway

I was published this week.  A recent blog post that I threw together at the breakfast table was seen by a representative from an online paper who asked if I would expand it for publication. Normally I turn down these requests because I hate that kind of publicity and scrutiny of my life and thoughts, but after so many friends have put themselves out there on radio and TV, I felt it was the least I could do. If you want to read it, the link is here.

My long lost love

I’m talking about chocolate. I had a particularly bad day on Monday. and out of the blue I had a craving for my favourite ever bar of chocolate. I’ve not seen it for sale in Ireland, so I just thought I’d check out amazon and there it was. And yesterday this was delivered by post!!!

Cote d'or , chocolate, .png

Friends

In the past few weeks I’ve met friends I haven’t seen for a decade, others I haven’t talked to properly for months, some who I see as often as I can. I met them in coffee shops, running slowly, running fast, on the beach and in the pub. When I feel the urge to hide away, I must remember how good these meet ups were.

Trips out

As the weather improves, my disabled daughter B and I are getting more adventurous in our trips out. We went to the theatre , and spent last weekend trying out many of the activities on offer as part of the St Patrick’s Festival. The variety is good for me, and there’s nothing better than seeing her so happy.

B, disability, St Patrick's Festival, .png

Not a hoarder

I’m not naturally a hoarder, but there are a few things I keep in the press (cupboard) just in case. And the just in case actually happened this week when after many many years I finally got to open this bottle of liquid magic and it cleared the biro marks off B’s lovely pink coat. Result.

Stain devils .png

A new wheelchair for B

Progress is being made: this week she and I got to view some new wheelchairs. They won’t have everything on my wish list, but the team are bending over backwards to try and meet her needs as fully as possible. She’ll also get to pick the colour of the frame, upholstery and wheel guards. I may have to hide the Barbie pink option…

So those are my reasons to be cheerful for this week. Head over to Mummy from the Heart for more.

All the fun of the festival #StPatricksDay

The plan was simple: to get my disabled daughter B to as many of the St Patrick’s Festival events as possible. Life and other speed bumps permitting of course.

First on the agenda was the Dublin Parade on Friday.

We parked in one of our regular spots down a back street – one of the advantages of driving an ugly wheelchair accessible van is that no one wants to steal it!

Finding the disabled viewing point on Westmoreland street was a challenge, even some of the officials didn’t know where it was. Finally we got there and it was spacious, with a great view of the parade route, and we weren’t even late (for once).

B was spellbound by the parade. She especially liked the marching bands.

Crazy band behindCrazy band front

The dancers were also wonderful to watch and many of them came over to high five my daughter, and the disabled children sitting with us.

Blue dancerspink dancer St Patrick's Day Parade March 2017

But our spot was also cold and exposed, and we got more and more chilled, until the heavens opened about 20 minutes before the end.

So soggy and shivering, we ended up going straight home instead of meeting up with friends nearby. But it was a great start to the weekend.

B

On Saturday I was hoping to bring B to a theatre and music event in St Stephen’s Green, but we had to begin the day on the northside, hunting for nappies. We’re lucky that the Irish health service provides four free nappies a day, but it’s not quite enough. So I always have a last minute panic when I realise that she’s going to run out before the next delivery. And sod’s law means that the nappy drought usually takes place on a bank holiday weekend. There’s only one shop in Dublin guaranteed to have the right size of adult nappies and it was only open on the Saturday. By the time the purchase had been made and safely stowed away, I couldn’t face a trek across the city so we searched for Festival events nearby, but found nothing. Even Wolfe Tone Park in the heart of the shopping district was empty apart from some disgruntled pigeons and an eager photographer. So we went to a cake shop and then paraded up and down Henry Street and even in the rain, my daughter was very happy to be back in her favourite place.

 

Wet B

The plan on Sunday was to visit the giant family funfair in Merrion Square, another southside Dublin Park where we’ve spent happy afternoons in other years lolling on the grass and soaking up the sun to the sound of different bands. There was none of that this weekend. We did have a lovely picnic next to the Dermot Morgan commemorative chair though.

Dermot Morgan chair

We admired the recycling robot.

Robot

And B loved the noise and excitement of the fairground rides.

All too soon it was time to head home for toileting. Back to the chores and the needs of my other offspring. The St Patrick’s weekend fun is over for another year, but the festival season is only just beginning. Watch this space for more adventures!

 

 

In another universe, St Patrick’s Day might look like this

A much anticipated day off work. A lie in, until at least 7.30 am. Coffee and croissants in the garden listening to the frisky songbirds, doing the crossword and being able to finish it!

Wishing a happy St Patrick’s Day to my teenager and young adult children as they groggily wander into the kitchen. Tell them to charge their phones and that I’ll see them later.

Jump in the car and meet friends for a walk in the hills, followed by a pint of Guinness and a late lunch in a country pub to mark the day.

Arrive home relaxed and wind blown and spend the evening catching up with my favourite shows on Netflix.

Of course that’s only half the story: Before I left my offspring would probably be looking for money and lifts to different places. Then it’s likely I would spend a worried day trying not to text them and find out where they are, what they’re drinking and when they’re coming home. I would be stuck at the country pub, because obviously I can’t drive home after a pint of Guinness, which would disagree with me anyway. It would probably be too cold and rainy for breakfast in garden and knowing my luck, the birds would be fighting not mating….

So today I’m going to be thankful for the beautiful smile my disabled daughter B gave me when I groggily wandered into her room, even though it was 5.15. I’m going to be grateful that I will know where all three of my children are today, that it’s likely no-one will be drinking alcohol, and while I won’t get to escape to the country, I will at least be outdoors and watching the Dublin Parade with my wonderful daughter.

So those are my reasons to be cheerful for this week. More at Mummy from the Heart.

me-and-b-march-2016

 

 

 

 

An Inclusive Trip to the Theatre

It’s so easy to do the safe thing when you care for a severely disabled child or adult, to stick to what you know.

Anything new or strange means lots of planning and anxiety – as if I don’t have enough of that already!

So it was with a fair bit of trepidation that I prepared for a trip to the theatre on Sunday with B, my disabled daughter, to see a pantomime version of Little Red Riding Hood by a children’s theatre group. Show time was 1pm, which meant bringing lunch with us. It was in a strange theatre, in a building I’d never noticed before, despite driving past it hundreds of times, so I didn’t know whether or not it would work for us.

But we had to go. One of B’s long time friends was going to be performing. She also happens to have Down Syndrome, and I wanted to support her, and it sounded like the kind of show that B would enjoy.

And luck was on our side.

B used the toilet before we left, so no danger of a soiled nappy during the performance. I left late as usual and rolled up to find no spaces anywhere, so I had to be creative with my parking, to make sure I could safely remove B’s wheelchair from the van.

There was a lift as promised and one suitable space remained at the end of a row where she could see the stage reasonably well.

From the opening song, I knew it was going to be a big hit. B knew all the songs and was very vocal at times with her appreciation, but luckily there were lots of children there so she wasn’t the only one laughing, and no one seemed to mind. There was also plenty for adults to enjoy from the political digs to some really excellent singing and dancing from the talented cast.

We ate lunch during the interval which was a bit weird, but it was lunch time.

On the stage B’s friend was no different to any of the other performers, except we were cheering her a bit more loudly, and I may have had to wipe away an emotional tear or two.

Fittingly the final song was We’re All In This Together. It was the perfect song to end a show that was inclusive for audience and performers alike. It said it all.

An inclusive trip to the theatre

 

Making a Difference

It’s been a difficult fortnight despite the wonderful visit of friends from the UK last weekend. Same old problems. The ones I used to write about, but don’t anymore. But I have to keep going, and one of the things that helps me when I’m down is trying to help others or generally make a difference. And my daughter seems to be doing the same!

Repeal the 8th

I don’t suppose every readers will agree with this campaign to repeal the 8th amendment to the Irish constitution and make abortion more widely available, and I’m not as sure of my opinion as I used to be, but I’m supporting the pro choice side for the sake of my daughters, and I’m proud that my eldest got out there and marched on International Women’s Day for a cause she believes in. It’s also 25 years since I marched while pregnant with my eldest daughter in support of the X case to allow a pregnant 14 year old to travel to the UK for an abortion. How little has changed since then.

Charity T Shirts

I’m not a big fan of charities in principle: I think they are often an inefficient way to target help at those who need it most – the most successful charities are often those with the best publicity and the cutest recipients. But like most people I have a few favourite charities, and The Jack and Jill Foundation is one of them, as my disabled daughter B was one of the first babies helped by them back in 1997. The son of the founder after whom the charity was named would have celebrated his 21st birthday this year. B will be 21 this year too and so I bought a running T shirt off them to mark the occasion and to say thank you once again. It’s quite nice too!

Me and my T, Jack and Jill Foundation .png

Media and social media

Friends made appearances on TV and radio this week to highlight the desperate situation of some carers and the disabled children and adults that they look after, mostly ignored by society. Lots of social media plugging was done and hopefully it helped.

I was also asked to write an article about carers, based on a recent post on here, and that will be published soon.

I’ve also felt very cheerful about being thanked by readers for posts I’ve written, both on here and my old anonymous blog – one post in particular gets around 50 views a day and new comments every week. It makes it all worthwhile.

Hope you had a good week and head over to Mummy from the Heart for more Reasons to be Cheerful.

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After the fun comes the fall

It’s no secret that I don’t enjoy life as a carer: of course I love my children, but I am impatient, intellectual, impractical, confrontation averse, afraid of violence, easily bored, love being outdoors, hate routine and drudgery and many other characteristics that make me completed unsuited to the role I now have for life.

Parenting my eldest daughter was a breeze. It still is. Even when she has problems in her life, I embrace them and almost enjoy dealing with ‘normal’ issues, the kind you can have a little moan about with anybody. And anybody can give you good advice, if you can’t work it out yourself, which you usually can.

It’s not the same with the disabilities and the differences that affect my other two children.

And so I cried this morning when she asked me had I enjoyed the weekend with my friends who were visiting from the UK. The truth is I enjoyed it too much. But before you think I was dancing on tables, I didn’t even drink any alcohol, I didn’t stay with them, I was home every afternoon to toilet B, and cook the dinner and set everything up so I could go back out to see them in the evening. B even came with me on Saturday when we went to the beach and the pub and a bistro that does the best chocolate cake in Dublin.

These are friends I have known for more than 30 years since I shared a house with them in the early 1980s. In their company my worries and anxieties just melted away. It was a glimpse into normal life. Don’t get me wrong: they have their problems too, some of them serious. Perhaps they feel sad today too, I don’t know.

But as I wrote recently, when you’re living inside the special needs bubble, it’s sometimes  easier to stay there. Sometimes a taste of the life you could be living can be  painful.

It was so much fun, but now I’m paying the price with the fall back into anxiety and depression and a huge pile of housework and administration and needs that have piled up over the past two days. I’ll pull myself together and get on with it shortly, but right now I need a few minutes to grieve for the life I once hoped to lead.

 

An alcohol free night out and other reasons to be cheerful

I did it!!

The alcohol free life I’m trying to achieve is getting one step nearer thanks to a night out with a group of friends visiting from the UK. Spent in the pub of course, just as it would’ve been thirty years ago. There were bottles of this and pints of that, and we talked about the old days and the yesterdays and everything in between. And I drank nothing. Well nothing alcoholic, thanks to Erdinger. And it was okay. Now I just need to repeat the feat a few more times!

erdinger-alcohol-free

What else happened over the last seven days or so?

We were all sick. And why’s that a reason to be cheerful, you might ask? Because the germ warfare took place last weekend, when there was nothing happening, and a week before the visitors were due to arrive. Phew.

On Tuesday we made and ate pancakes, a lovely new healthy recipe from Simply Homemade, and B and Eldest loved them, even though they were sugar free.

porridge-pancakes-simply-homemade

And finally? The big family haircut took place without too much trauma on Wednesday, so we’re looking smart and shorn and ready for the Spring, whenever it arrives…

spring-dublin-river-liffey
Spring’s false dawn earlier in the week

Hope you had a good week and head over to Mummy From The Heart for more reasons to be cheerful.

Books, blogs and being tagged

There’s not so many cheerful bloggers around this week, but I am doing my best despite being slightly unwell, which luckily has happened this weekend when I don’t have to go anywhere, but I will anyway as my disabled daughter does not like staying in the house for too long. Breathes through blocked nose…

Books

Despite the current germfest, life is looking a bit brighter right now (touches wood) and that means I’ve gone back to books. In a small way. Like I’ve still to finish the book I began at Christmas. But at least I’m reading again. And getting excited about these new books:

‘City of Friends’ by Joanna Trollope. Not science fiction but the story of four middle aged women, one of whom has to stop working to care for her mother. So you can see why I might be interested!

‘The Seven Sisters’ by Neil Gaiman. A follow up to the fantasy/science fiction novel ‘Neverwhere’, which was also my second favourite TV series of all time. So I can’t wait for this to come out.

‘The Book of Dust’ by Philip Pullman. A follow up trilogy to the Northern Lights series that my eldest and youngest adored, so we will all be fighting over it when it’s published.

Blogs

I’ve started a new blog – and I’d actually have trouble telling you all the blogs I’ve worked on at this stage. But this new blog is just for me, it’s going to be full of recipes that work with the very restrictive GERD diet that I now need to follow. I’ve had to learn some new tricks to make it work, so that’s good too.

carrot-and-sweet-potato-soup-smaller

Being Tagged

Out of the blue a childhood friend tagged me in a family photo from about 2000. It was a photo of her family, but they’ve been like a second family to me too, and B and I snuck into the picture (she seems to be a long way away from me, but I think she’s in her walker, and as usual refused to smile to order!). Happy memories of a time when special needs did not stop us living a normal life.

me-plus-b-2000

Check out Lakes Single Mum for more reasons to be cheerful and have a great week x

 

Fat middle aged mum runs for her life

Okay so maybe ‘slightly overweight’ middle aged mum would be more accurate, but fat makes a better headline, right? Anyway, I’m 11 stone and a size 14 which is huuuuuuge by fashion industry standards and I have fat in places where no fat should be. Which is why I will never wear a bikini again!

rain-running-me-phoenix-park-2016

This is the fatter me recently, running in the Phoenix Park in Dublin. In the rain.

london-marathon-1987
London Marathon 1987, one of the best days of my life!

This was me in my mid twenties on a very proud day. But my running career had an inauspicious start.

Three years earlier I could’ve been voted employee least likely likely to run for a bus. My colleagues mocked my attempts at jogging, and when I announced my intention to run a half marathon they sponsored me large amounts per mile… But I got the last laugh, and a local charity did extremely well when I finished in just over two hours.

And I just kept going, joining clubs, running races, taking breaks and beginning again. Right now I’m training really hard for the 10K Great Ireland Run in April and hoping to break the hour — a big change from the days when I was trying to break 45 minutes! But I’m nearly there…

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So while I’ve been running on and off for a long time, others like Sinéad at Shinners and the Brood are just starting, with the excellent couch to 5K programme. Good luck to everyone who is beginning a journey to fitness in 2017, and here are some random running tips from a veteran…

All you need is a pair of trainers and a bit of determination to get started.

But you’ll soon want to spend some money. For comfort and to avoid injury you should invest in a good pair of running shoes bought from a proper running shop where advice is available. Plus a supportive sports bra (unless you’re a man, I guess!). And there’s lots of amazing, gorgeous and useful running gear now, with quick dry fabrics and even bum bags with water bottle holders!

Running on your own is hard to do all the time. I would definitely recommend joining a running group or club. You can find them via social media, sites such as boards.ie (Ireland) or apps like MeetUp.

A goal will keep you focused and keep you going. Whether that’s a regular 5K #Parkrun  or a marathon, it will help you leave the house on those days when you’d much rather slump on the couch with a tub of Ben & Jerry’s.

Variety also helps avoid boredom: take different routes, take photos when you need to stop. Try longer slower runs, or shorter faster ones. Try different locations and times of the day, running in sand or up hills will test you, but the scenery will be great, and there’s something special about running in the city early in the morning when it’s quiet and fresh.

Races are fun to test yourself and to experience the feeling of running with a crowd, getting a medal, a T shirt, and maybe raising funds for a good cause.

Struggling to find a babysitter? Run with a buggy. They are welcome at some parkruns and bigger races too. I slowly ran the Great Pink Run 5K course last year pushing my adult disabled daughter.

Running apps, love them or hate them, they can be motivational. Most people I know use Runkeeper.

Need a break from running? Take it. Your legs will remember the training you’ve done and it will be easier going back than it was starting out.

Running may not feel easy at first, but if you push through, you should get to a point where you feel comfortable running at a pace that’s right for you. You’ll enjoy the feeling of moving, of meeting other runners, of looking at the world around you, and the fresh air. Our bodies were made to run!

As for me, I’m running for my life. To keep me alive, to give me more energy for my children, to help me ditch medication, and to battle anxiety and depression, the life partners of many family carers, including me.

So to all the middle aged women out there who say they cannot run, I have this message: Yes. We. Can.

The Minister for Health is right to say that family carers are the backbone

Irish Health Minister Simon Harris TD reportedly said that family carers are the backbone of carers at a conference for people with acquired brain injury in Dublin today.

But you know what?

He’s right.

And I’ll tell you why.

Because the backbone is hidden away out of sight and out of mind.

No-one thinks about their backbone.

No-one pays it much attention.

Most people take it for granted.

They do little to support it.

They do things that will weaken it.

They do things that may damage it.

But they expect their backbone to soldier on regardless.

They only notice it when it hurts or breaks.

Then there’s a crisis, cries for help, and they wish they’d looked after their backbone all along.

And it seems that every generation is destined to make the same mistake, with their backbone and with family carers who provide such a vital service to society even though most people forget about them as they go about their daily lives.

Perhaps the Minister for Health will now show that he understands the importance of looking after society’s backbone. Let’s hope so.

I also want to dedicate this post to the memory of Lisa Williams who was a friend of many of my friends and whose death was reported this week. Rest in peace Lisa.