My Sunday Photos: It’s Festival Time

Sunshine, live Rock ‘n Roll, dressing up, hot chips, cool ice-cream, vintage cars, stalls selling bric-a-brac and festival essentials (retro sunglasses for a fiver) and even beer if you bring your own. Just ‚ā¨10 to get in and all in a good cause. What’s not to like about the Rockin’ Road Festival? It’s Drumcondra’s answer to Electric Picnic. but without the crazy crowds and rip off prices. Especially brilliant when you have a disabled daughter who loves music, crowds and being out…

Louisiana 6
The Louisiana Six
view at the Rockin' Road Festival
You can even see the mountains!
S and B at the Rockin' Road Festival
B and a pal shootin the breeze ūüôā

Sticking my old head in the sand and having fun doing it

I *may* have mentioned that I have a fairly scary birthday coming up soon, and I am in complete denial. I’m in fear that I may have to begin acting my age, wearing beige cardigans, and going to Neil Diamond concerts (not my thing, apologies if it’s yours). So if this post seems a little crazy, that’s why. I’m having a last hurrah, with the expectation of old age descending like a metal shutter some time next week…

In the meantime, I have all these reasons to be cheerful:

…My disabled and non-verbal daughter B clearly said ‘mum’. I don’t know if it was a word or just a sound but it was lovely to hear.

…Being asked if I was B’s sister at a communion party – it’s amazing what long hair and sunglasses can hide!

…The house now has two ramps for B, so she can enter and exit through the front door, like everyone else. And she’s enjoying it too.

…A flower in bloom, one I planted myself, and trained up a trellis that I put up myself, with the help of my eldest daughter and a drill.

Bloom, flower,, clematis, trellis.png

…Beating the kids at a fitness challenge at a local Family Fun Day, and B loving every minute of it.

Smiley, B, disabled daughter,

…Climbing the Wishing Tree on the top of the Hill of Tara to tie a wish for a friend, after much coffee, madness and cake…

If you enjoyed reading this, why not head over to Mummy from the Heart for more reasons to be cheerful.

 

On celebrating the saints and scroungers during Carers Week

Because that’s how the public sees us.

Every story about the selfless middle aged woman* caring for elderly parents and disabled children feeds into the saint narrative, which reaches its peak during Carers Week and the annual carers’ awards. And while I’m very happy for those who win and enjoy the accolade, there are carers like me who find the whole thing a bit patronising: it’s like society feels that all we need to keep going is an annual pat on the head.

No mention of real support, pay for the work we do, pension arrangements for when we are too old to care, or anything that really matters.

The rest of the year we’re painted as scroungers.

Of course keyboard warriors like me were blamed when Leo Varadkar (likely to be the next Irish PM) had to row back on his rhetoric about being a leader for people who get up early in the morning. He had to add in carers, and others. But the genie was already out of the bottle, as the above article shows, giving permission to portray carers¬†as whingy costly parasites, so long as it’s not Carers Week.

I write about my life as a carer, and luckily the words pour out of me head like a torrent: I don’t have to sit down and wonder what to write, instead I find myself jotting down thoughts whenever I have a spare few seconds, often when I’m doing something else as well!

But it is hard to find the time or energy to write when you’re a carer, so there’s very few of us who do, but I’d like to introduce you to two friends of mine. Like me, neither will be attending of the events for carers during Carer’s Week. Because they can’t.

This week is Carer‚Äôs Week. There will be a wide variety of events across Ireland for carers to attend ‚Äď lunches, coffee mornings, walks, pamper events with manicures and massages, nights out with music and dancing ‚Äď all to celebrate and treat the much deserving carers. But, how many of the nation‚Äôs carers can attend? I can‚Äôt. I‚Äôm housebound while my son is bedridden. I have no one to relieve me so I can go to any of those events.I have no one to relieve me so I can go to any of those events.

Read more at Transitioning Angels

We’re back to no sleep. But with Luca I think he has constipation issues again, he’s back on movicol.

Emmy was supposed to go for a blood test today but no one up to the hour drive there and hour drive home and we’re still a bit under weather so I cancelled the appointment, all I seem to do lately is cancel appointment after appointment

We’ve reached the stage where we get no energy boost at all, just permanemt tiredness and feeling flat, the weather isn’t helping.¬†

I bought cbd capsules for myself during the week, they should be here today, can’t wait to get started as I’m in a shit heap, constant fibro flare and pains in stomoch from IBS.

Read more at the Spectrum Facebook Page.

Both write about the harsh realities of extreme caring in a world that doesn’t really want to know, doesn’t want to think about it, doesn’t want to imagine that it could happen to them too. Even though it could.

 

*The peak age for caring amongst women was 45‚Äď49, with 11.2% of women in this age group providing unpaid care, amounting to 572,680 hours of care every week, according to the 2011 census.

 

My Sunday Photos – a ramble up Killiney Hill

Killiney Hill is a local beauty spot and viewpoint in South County Dublin. From sea level it is a good climb, but there is a car park near the top, which is where this ramble began.

This is the first in a planned and agreed series of summer outings with one of my other children ūüėÄ.

Killiney Hill looking south 2
Looking south
Wild flowers on Killiney Hill
Wild Flowers
Scots Pines, Killiney Hill,
Scots Pines
Dublin, Killiney Hill, View, 2017
Dublin City

 

A Family Affair at the Mini Marathon

How to explain the Mini Marathon and why it’s so loved by so many women? After all, isn’t it just a 10K race that takes place every June Bank Holiday weekend through the streets of Dublin?

Yet it’s so much more than that.

For me the highlight is the countdown to the start, with the nervous smiles among the runners, the anticipation, the watches being checked, water bottles discarded, goosebumps from the strains of Sisters, are doing it for themselves, and knowing there’s 30,000 more women at your back.

The Start Line, Mini Marathon 2017,

You feel like you’re part of something.

And you are.

It’s the biggest women only race in the world and one of the biggest charity fundraisers in the Irish calendar.

I’ve probably told you before that I ran it many times in the past, until life got too complicated! And that my first attempt was in 1992 when I was 5 months pregnant with my eldest. This week she walked it pushing her disabled sister, with the help of a couple of friends. And despite the rain that set in as I finished and they reached half way, we all loved the experience.

For me, almost everything went right. I wasn’t feeling well, but with the help of a really fast course, I crossed the line in a very satisfying 57 minutes and 15 seconds. Which means I qualify to enter as a runner again next year. And if I can keep that up, I will do it every year (once I have someone to mind my disabled daughter – or push her round for me).

And having something special to look forward to every June from now on is my  reason to be cheerful for this week. Head over to Lakes Single Mum for more.

The Other Side Of The Wall – a book review I HAD to write

Disclosure: Andrea Mara, the author of The Other Side Of The Wall is a Facebook friend, but I paid for my Kindle download and I was not induced in any way to write this review.

The other side of the wall, psychological thriller, Andrea Mara, Office Mum.png

An exhausted mum of two young children thinks she sees something in her neighbour’s pond during the night shift. And so begins a chain of mystifying and worrying events, which tap into every woman’s fears about her children’s safety and her own, but the author of The Other Side Of The Wall handles them with a lightness of touch that means most readers should not get nightmares, unless you’ve got some very strange people living next door…

There’s a deserved buzz around this book, and even though I don’t usually read psychological thrillers, I was drawn to this one. Perhaps because its themes of motherhood, juggling, living in the suburbs, and worrying about the children are so universal.

The story has all the twists and turns that you’d expect and¬†side plots including difficulties in the workplace, a young man with a troubled past, and a mysterious case of domestic abuse.

As a reader it feels as though she is telling the story to you alone, whispered confidentially in a quiet corner of a coffee shop in leafy south Dublin. It did not feel like a tentative first book by an aspiring writer, instead it has the confidence and sure touch of an established author.

I genuinely could not put down The Other Side Of The Wall, and I have the dark circles to prove it, from late nights when I had to read just one more chapter…

The pace kept up until the very last page. And left me wanting more.

—————–

The Other Side Of The Wall is available now in all good bookshops and from Amazon.

Author Andrea Mara is a mother of three and lives in Dublin. She also writes the award winning blog Office Mum.

 

 

A spoonful of sugar

I hope you’ve noticed all the positive posts on here? I’m trying really hard to stop moaning, and it’s helping me too. But the problems in my life haven’t evaporated with the summer sun, they’re still floating around and keeping my anxiety levels bobbing up and down.

I’ve been forcing myself to drink tea on shaky days, but without feeling much relief. In desperation one day recently I chucked in a spoonful of sugar as well, and the difference was amazing! Who knew that the biggest dietary enemy was just what I need to feel better?¬†So finding something that helps is my first reason to be cheerful for this week.

And here’s a few more…

… I fixed the coffee machine. It had almost completely stopped working and I was considering throwing it out until my google searches finally revealed the solution to the problem. Result. And a great feeling of competence.

… After SEVEN years, I’ve finally got the garden looking reasonable and as low maintenance as possible. Well apart from my pots. Have to have a few flowers.

… A new low cost gym, a new Lidl and one¬†of my favourite coffee shops are all¬†opening just¬†up the road.¬†Perhaps I don’t want to move after all.

… Breakfast and a run on the beach with friends at a local seaside town.

Balbriggan beach, breakfast running,

… A mini holiday and a few outings when family visited for a long weekend.

Phoenix Park, family,

Lots of great news for my disabled daughter.

… After the training, the qualifying, the arranging, the day is finally here : I’m running in¬†the world’s biggest women only race tomorrow, the fabulous Dublin Women’s Mini Marathon. Cannot.¬†Wait.

Dublin Women's Mini Marathon,

… A fairly major birthday looms and I’ve decided to spoil myself a little bit. Watch this space¬†ūüėÄūüėÄ

Hope you had a good week xx

(Head over to Lakes Single Mum for more reasons to be cheerful)

 

Hot wheels and cool news

You know how much my disabled daughter likes her adult programme right? Well I can tell you now that it has been rolled over for another year. Getting the news is great in all sorts of ways.

Timing Рconfirmation of her original placement did not happen until the week before she was due to start in September 2015. That was the fault of the Irish Health Service. This year they have hit their target of informing me before the end of May.

Future – there’s no certainty yet about that, but this year’s roll over is a hopeful sign apparently – either that her place will be confirmed indefinitely or that¬†it will be confirmed on an annual basis. Here’s hoping!

This week also saw the staging of The Lion King, a special production that¬†a group of disabled adults have been practising for all year: it was a mixed ability group, including some with speech and some with mobility. It was great fun to watch and B totally enjoyed taking part. As with¬†last year’s Christmas play¬†ūüėÄ

Christmas, The Lion King, Play, Angel, Bird, B, Smiley,
And today was another milestone day: after an 18 month wait, B finally got the chance to try out a power chair. I am really excited about this as she used to love using a walker when she was a child, and later driving her chair in school on the AKKA,  which is an electronically controlled mobile base that uses photo-electric sensors to follows a predetermined route, and the wheelchair user can control the movement using a switch like the yellow one in this old photo collage:

AKKA, Smiley,

A power chair for B would have dual control, so her carer could both prevent collisions and also use the power to take the strain of pushing, which could become very difficult for me as I get older. B was a bit unsure today, but hopefully she will love it once she gets used to the idea.

Power chair, first try, B, Smiley,

A¬†little bit of freedom to make mistakes should be allowed too¬†No-one wants to have everything controlled for them so I’m hoping the health and safety gods will look away occasionally and give her the chance to learn and maybe even break a few rules…

 

The best party ever? #AfricaDay2017

(Well the best since last year’s¬†Rockin’ Road Festival anyway)

It’s that time of year again. There’s stuff happening every weekend, Dublin has come¬†¬†alive again¬†and we’re spoiled for choice. It’s actually impossible for us to go everywhere and sample everything!

Some events have become annual fixtures in my disabled daughter’s calendar of weekend activities, like the garden festival Bloom that takes place at the end of May.

But it’s good to go to something¬†new¬†and different, so I was very excited for both of us when I heard about Africa Day, to be held in the familiar grounds of Farmleigh House in Dublin’s¬†Phoenix Park.

The event was free to enter, and you could pass a happy day there without spending a cent, if you brought your own picnic. No champagne and caviar though: it was strictly alcohol-free.

B and I arrived soon after it opened, and easily got parking and avoided the massive traffic jams that we saw when we left mid afternoon (we would have stayed all day, but once again lack of a Changing Place meant we had to go home so B could use the toilet).

So what is Africa Day, for anyone unlucky enough not to be there? Well, it was like the best party you’ve ever been at: it had everything:¬†music, dancing, food, and lots and lots of colour, exuberance and joy, ¬†and more happy smiles than you’d see at a wedding.¬†Everyone was everyone else’s friend and determined that a good time was¬†had by all.

Party Time 3, #AfricaDay2017,

There were¬†three zones,¬†based around three stages: you could call them the food zone, the kiddy zone and the party zone. We sampled all of them and there’s no prizes for guessing which one we liked¬†the best!

We headed for the food zone first and pottered around the stalls before eating our lunch in front of one of the early performers. This area was not wheelchair friendly, being in a very bumpy field, yet the furthest corner housed a bank of Portaloos, including a very welcome wheelchair loo РI wonder how many people were able to access it though? (There is also a permanent disabled toilet at Farmleigh that is accessible).

We relaxed for a while in the kiddy zone enjoying more music and the parade of costumes.

African costume, #AfricaDay2017

And then we discovered the party zone, and we could have stayed there all day.

But the music and dancing wasn’t only on the stages, oh no! It was everywhere…

In front of the stalls in the food zone:

Dancers, food Zone, #AfricaDay2017

In the courtyard:

Dancers in the courtyard 1, #AfricaDay2017

And of course, in the audience in the party zone.

You really really should have been there…

Summed up, you should be here,

 

 

 

The dirt trail

It’s not deliberate. I don’t push my daughter’s wheelchair through mud on purpose.

And this time, I have no idea how it happened. Yes it was a mucky day, with¬†sunshine and showers, but we were walking on the pavement, and my shoes were clean when we arrived home after a short but happy trip to the shops (a coffee stop may have been involved too…).

Being not a housewifely type I gaily pushed her chair through the door into the kitchen. It was some time later that I noticed the trail of dirt and debris in its wake. Yet this happens almost every single time.

But what can a hapless carer do?

…You can’t leave the wheelchair in the porch with the muddy shoes.

…If you hose it down outside, everyone and everything gets wet, and there will still be brown skid marks on the floor. So attractive (not).

…Brush the wheels once indoors. Of course you always miss a few specks and they get walked¬†everywhere.

The dirt trail

..Stay in unless it’s dry. But¬†this is Ireland,¬†and both of us¬†like going out.

…Stick to shopping centres? Ugh, no thanks.

Have you any other ideas? If you’re a wheelchair user or pram pusher, what do you do?

There’s probably an obvious answer. It’s just that no-one told me…