Dull and domestic details can be cheerful too

Disclosure: I was not in any way paid or asked to include the products on this page, and the photos are my own.

I nearly cried this week when I accidentally knocked a treasured family photo off the wall and smashed the glass, while hoovering. But I didn’t. And while it felt like the last straw for a few minutes, my eldest reminded me how easily it could be fixed. Unlike the problems facing so many other people.

Because so far September is going surprisingly well. A transition from constant fire fighting to dull domestic and disability duties feels odd, but once there’s no disasters, it’s definitely a reason to be cheerful. And yes I went a bit mad with the alliteration there, sometimes I can’t resist it…

The change in the weather will take a while to get used to. For now, I’m mostly frozen. Yesterday I got chilled after a sudden shower of rain, and with a bit of spare time, I swapped my usual 3 minute shower for a reasonably leisurely bath. It was like a reunion with a long lost friend. Wonderful.

Talking of wintry conditions, I’m enjoying seeing all the warmer clothes in the shops and planning what to buy my disabled daughter as her clothes never last long, due to chewing, sitting, spills and stains, and holes from yanking unwilling garments into place. I’m thinking the pink and blue scarf and hat would be be perfect on her.

Autumn clothes

This undomesticated goddess got another boost this week and I could actually kiss those lovely Lidl people sometimes! Mostly when they bring out products that actually work like this limescale remover.

Toilet, Lidl limescale remover

I’m tempted to buy a lifetime supply in case they discontinue it like the chlorine spray that turned grey grout brilliant white again. If you’re reading this, lovely Lidl person, please start stocking it again.

So that’s my reasons to be cheerful for this week: head over to Mummy from the Heart for more.

R2BC at Mummy from the Heart 

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Reasons to be cheerful 7.9.17

Several health and domestic worries this week as life gets back to busy term time normality means that finding reasons to be cheerful continues to be very important.

Parkrun with wheels

We finally did it. I ‘ran’ the 5K Fairview Parkrun pushing B in her adult buggy, and a couple of the fast runners who’d already finished helped push the buggy round the final lap. B loved all the attention, especially when everyone clapped as we crossed the finish line.

Fairview Parkrun 2.9.17 5

We’re still alive

My freezer was making ominous noises once again, and eventually I managed to remove this giant ice block with embedded hot dog roll, but only after defrosting the beast. So the fridge got filled with frozen food including a bag of prawns that I’d bought for one of the children in a moment of weakness: the health and safety police have me terrified of not cooking shellfish properly. But my dislike of waste won and I made a prawn curry. Not only was it delicious, but no one got food poisoning!

ice block

Tiger isn’t closing after all

Discovering that the local Tiger store was not closing after all gave me a random boost this week – it’s where I’ve discovered lots of little things that B likes or that help her, and all at a bargain price.

Getting over the fear

Thanks to the encouragement from all my online friends I went to get my chest pains checked and enjoyed a part of the Irish Health Service that works magnificently: my GP referred me to the free chest X ray clinic – and the service is so efficient (and friendly) that I was home again in 45 minutes. Yesterday I got a text from the surgery to say that the test results are normal. The pain must be stress-related so.

A kind gift

Summer can be a bit of a social desert as most people are busy with families, children and holidays, so it was lovely to catch up with some friends yesterday, including the inspirational Carol Murphy Haslam who is still facing life with a smile despite losing most of one arm to cancer.

Another friend brought this for me, and you know how I feel about kindness!

a kind gift, coffee mug.png

The magic of Twitter

I needed some recommendations for a readable book on quantum physics (don’t ask) and within 15 minutes Twitter had provided what Google couldn’t. What more could you ask for?

Up the stairs

I’ve been changing the sleeping arrangements in the house. Again. But sometimes you have to as children mature and especially when they’re facing into important exams. As part of the process I was moving wardrobes around and one of them got stuck on the return landing. Which caused fear of a different kind. But I felt fairly cheerful and competent when I finally got it unstuck and then into position in a difference room with the help of a duvet, a hammer, a chisel, and my eldest daughter!

Memories

I had reason to go through some very old files this week due to another panic not yet resolved. They’d been infiltrated by a couple of memories. One of B when she was little, and another of a very important day in my life, when apparently I was more concerned about mints? It made me smile anyway…

R2BC at Mummy from the Heart 

Back this, back that

School is back, my back is sore, life is getting back in the normal routine, and I’m back to really needing to do my reasons to be cheerful! So here goes:

The house is empty today, and now it is clean too. Productivity increases exponentially here when all my children are where they’re supposed to be…

Getting back to normal after a week off  – I was even delighted to welcome back B’s morning carer when I answered the door at 6.40 am!

Back to the running group  earlier this week, and I might even manage a Parkrun on Saturday pushing B.

A walk and lunch with friends (and my daughter) on Saturday that left me with dreams of moving to a wheelchair accessible canal side apartment, close to the new tram stop.

That was until Sunday, when my desire to move nearer to the sea was reawakened by a beach picnic with B.  It was warm and fairly sunny, and would’ve been perfect apart from the occasional whiff of rotting seaweed on the breeze!

Poolbeg chimneys August 2017

And then finally last Friday saw the end of the Rainbow Junior Arch Club summer programme with a trip to Lullymore Heritage Park, which I really mean to blog about – just as I promised last year. Hopefully this time I will manage it.

I was worried about how this week would go, but all is unexpectedly calm this evening. Long may it continue.

Hope you had a good week, and for more reasons to be cheerful, head over to Lakes Single Mum.

 

The Diary of Doom and other reasons to be cheerful

So last week I ran out of time and positivity, and no reasons to be cheerful got done. I’ve been feeling both guilty and a bit bereft since, especially as I’m heading into a stressful period, with school for my youngest beginning next week.

My head has been a disjointed mixture of happiness, stress, anxiety, fear and worry, so rather than inflict all those negative emotions on all of you, I’ve reconnected with the Diary of Doom, aka my journal, and hopefully I can park most of them in there. It’s a bit of a shame really, as something so pretty deserves to be filled with beautiful words, but still.

The Diary of Doom

I’ve taken a week off: From services, carers and my exercise programme.

B is at home all week, and eldest is away. So I can’t just pop out for a run and I’m doing lots of wheelchair pushing and a bit of yoga instead. And you know what they say about a change…

I cancelled the carers so I could switch off the alarms and escape from the schedule for a few days, even though it means doing everything myself. I’m actually enjoying it, but my back is protesting.

Of course, the paperwork and the admin doesn’t take a week off –
I have an appeal to complete within 21 days, a retest of the van, government deadlines to meet, and preparations for school. It’s hard to believe I spent most summers during the last decade down in Co. Wexford with the children. Bureaucracy has made that impossible now.

The nappies ran out, so one afternoon was devoted to chasing up the next delivery and sourcing some to tide B over. Their successful purchase was celebrated with cake, of course.

Cake, The Wooden Whisk,

There was a hospital visit for B, and despite all the health service bashing that goes on, she had an appointment and blood tests done in less than 2 hours.

One of my best friends for the past 40 years came to stay with her husband and daughter and we had a wonderful few days doing the tourist thing in Dublin, including only my second visit to the Guinness Storehouse, which has some very strange exhibits en route to the free pints at the top of the building!

A fish needs a bicycle, Guinness Storehouse,

Then there was the delivery of police traffic cones to ensure I can park the van outside the house even when all the parking space is taken by match traffic heading for the nearby stadium.  Huge thanks to #AbleHour, @cmcoughlan @SenatorJDolan  and @CMDIRL  for making it happen.

Finally, I’m delighted that my friend Carol is now blogging about cancer and disability, and here’s the link to her latest post: https://carolsramblingsblog.wordpress.com/2017/08/24/the-words-that-change-your-life/

For more reasons to be cheerful, head over to Lakes Single Mum who is the host this month.

Reasons to be cheerful – the simple things

It’s been another week of ups and downs, both of which have conspired to make me very late with this very important post with my weekly reasons to be cheerful. And yes it is important, it helps to keep me grounded and focused on the good things in my life, at least for while. It gives me a lift, and then I can tackle the problems. So here goes:

My severely disabled daughter B was very happy during the early part of the week helped by chocolate cake that she could pick up herself without it squashing into crumbs, and even a trip to Tesco was fun.

Got my van serviced, and despite its age, all it needed was a few new light bulbs. It got its annual wash and is now ready for the biannual NCT next week (the Irish MOT). Fingers crossed it passes.

My eldest daughter unexpectedly bringing me home a take away coffee on Friday. My eyes may have been moist. As I’ve said before: I hate crying, except when people are kind (or I’m grieving). Then I can’t help it. She also made me lunch, as it was a very stressful day, and I may write about that later.

You know I have a phobia of drilling, but I’m a dab hand with a screw driver (no sniggering please!) and doing little jobs like putting in door stops helps me feel more competent around the house.

Huge thanks to Fairview Parkrun, I really enjoyed my first time taking part, but I was beaten by a ten year old… 😶

That’s it for this week: head over to Lakes Single Mum for more happy posts.

 

My PR career as a carer

It’s true that events management was not my favourite part of public relations. But organising my disabled daughter’s activities beats the mind numbing bum wiping and form filling parts of being a carer any day.

During the winter it’s a no brainer: there’s her adult programme during the week, and regular weekend activities for her and her brother. I’m on auto pilot preparing for them.

It’s different during the summer months: her club organises a summer project but there is still a lot of event management required from me, as the only parent of a young adult who needs a wheelchair.

So I found myself sitting at the kitchen table on Wednesday morning organising our first trip on the urban train (DART) to an out of town seaside resort (Bray) to visit the Sea Life aquarium with our friends from the Rainbow Junior Arch Club.

9am – I checked all the following:
Disabled parking at or near the station
Working lifts at both stations
How to wheel the chair from the platform onto the train
Accessibility of the aquarium
Availability of a disabled toilet (no changing places toilets, obviously as they are still a novelty in Ireland)

9.30 am – Make a packed lunch for myself and B – in case we couldn’t find anywhere that served mashed food – though I have mashed chips in an emergency. Pack buggy with every conceivable item we might need. No point in taking the wheelchair because (a) the weather, (b) no portable tray (c) not enough storage and (d) only the buggy reclines so I can fix her up after she uses the toilet (I had to lift her on and off, and my back survived this time, but MY DAUGHTER AND OTHERS NEEDS MORE CHANGING PLACES TOILETS).

10 am – Half an hour to help my daughter use the toilet (including hoisting), put on a fresh nappy, get her into her outdoor clothes, and wheel her outside and up the ramp into the car. Phew!

But it was worth it.

Collage of B, Day trip to Bray, Sea Life,

We both loved the DART – I’d never done the scenic journey from Clontarf to Bray along the coast, and I felt like I was on holiday with friends: B loved it too, and was so enthusiastically loud and we got so many glares that I resorted to getting out the Jaffa cakes to quieten things down a bit!

Sea Life kept up occupied for about an hour – the aisles are very narrow and there were occasional buggy traffic jams, but our visit also coincided with shark feeding time, and that meant we had the place for ourselves for a while, which suited my daughter better as she could see more (some exhibits do not have glass walls and those were no good for her).

Coffee and a walk followed, and then a very happy trip home.

The previous weekend involved even more planning, but at least we went to familiar places: a Saturday walk into town and a visit to a new cafe, that could become a favourite as it offered cheesecake, a roomy disabled toilet and music – but not too loud.

Sunday involved two trips, complicated by the matches at the nearby sports stadium, that involved me parking in the middle of the road to move the bins that blocked our parking space each time we came home so my daughter could use the toilet.

In the morning we went for our second run with Rabbits and Runners, and B loved it even more than the first time, if that’s possible!

The afternoon saw us dodge the showers at the Hotter than July World Music Event – and I’m sure you’ve noticed by now how much we both like live music events, even better when they’re free.

There’s a bank holiday weekend in Ireland starting tomorrow, so the event planning for my daughter has begun already.

So you could say I didn’t give up my career as a PR when I became a full time carer. I still use the same skills, but for the most important client I’ve ever had: my beautiful daughter.

And that’s my reason to be cheerful for this week. Head over to Lakes Single Mum for more.

 

We’ll always have Paris

Except some of us won’t. Not everyone gets to go abroad, and I often get a little pang for the life I might have had at this time of year. I’ve never been to Paris, or many of the other places on my travel wish list: my last proper foreign holiday was in May 1996.

Me, Bellagio, May 1996
Bellagio, Italy, May 1996

I did have plans to buy some kind of disability friendly camper van or caravan, and travel with my disabled daughter, but that now seems unrealistic. The world of transport is moving so fast: I can’t justify the investment, when petrol and diesel vehicles could be banned in a few years time.

And there’s another thing: I’ve read a few stories about non verbal children and adults who’ve died of starvation, because their sole carer died and they were unable to raise the alarm. If my daughter’s future is living with me, just me, then she needs a safety system, she needs a stable home, a year round day programme and regular home help visits, to ensure that she will be found and cared for if anything happens to me.

Obviously this could change if real respite options that my daughter liked were made available. But I’m not holding my breath: I know the State has other priorities.

So instead I’m going to count my blessings and find some reasons to be cheerful:

Life in general

Life has got a little easier in the past six months, as things have improved for one of my other children.

Building work

It’s gone on a lot longer than expected, but it’s almost finished now, and hopefully our damp problems and other worries will be consigned to history.

Plumbing

Yes, everything went wrong at once, and our ancient and complicated plumbing system packed up too. It took four visits by the poor guy who thought that all he’d have to do was service the boiler, but it’s finally working again.

The Bargain Bin

The kind of luck I don’t get very often: spotting a new bargain bin in Penney’s (Primark in the UK) with T shirts on sale for a euro, and in the right sizes for B and I. We got first dibs and I found 3 in colours and sizes to suit. By the time I’d tried them on, they were queuing to rifle through my leftovers.

Bargain Baby Bottle Brushes

Maybe I’m showing my age, but I don’t believe a baby bottle brush should cost €10?

I tried all the usual places and that was the standard price, with nothing cheaper than €6 😶

So I held out until I had time to pop into Dealz and found one on sale there for €1.50.

Result.

And in case you’re wondering, I use the brush to clean reusable water bottles and coffee cups, and the old one had that disgusting looking black stuff at the base of the bristles…

The fridge is recovering from the heatwave

Never buy a Samsung American Fridge. I did, just for the extra storage. I believed the hype and the description, but I was so wrong. It leaks water. The frost free freezer has to be regularly defrosted, and the electronic controls cannot be controlled by the user: it is a fridge with a mind of its own. And in the hot weather, it was minded to warm up, so I’ve had to buy food on a daily basis and ensure that everything got eaten quickly too. Luckily, as the temperature outside drops, so does the temperature inside the fridge. I see less trips to Tesco in my future. Hooray!

Hope you have lots of reasons to be cheerful this week too. Head over to Mummy from the Heart for more.

R2BC at Mummy from the Heart

Creating a good life WITH my disabled daughter

‘Ordinary lives in ordinary places’ is the buzz phrase in disability policy right now, and you’ll have seen it before on this blog.

It appears to mean providing the supports and services that disabled people need to live independently in the community. But as far as I’m aware there’s no room in this policy for those with expensive high supports needs (severe/profound disabilities). The implicit assumption is that families will provide cradle to grave care and be responsible for ensuring that their loved ones enjoy a fulfilling life too.

I think that’s very unfair on my disabled daughter B, but for now I’m going to make best of it, and try to create a good life for both of us.

And this week we made a lot of progress.

Powerchair Training

On Wednesday I went to see B learning how to use a powerchair. It’s early days, but she has the most patient person I have ever met working with her. I’m so grateful she has been given this opportunity, and while she has a lot more progress to make, it was fabulous to see her reaching for the joystick, especially as it’s currently positioned in a difficult place for her to reach, due to her limited range of movement.

A dual control powerchair would give her more freedom, and conserve some of my energy too. So I really hope she succeeds in proving she can do this. I think she can.

Bowling

B enjoys bowling, especially with friends and when it’s quiet enough so she can hear the background music. It’s also one of the few sports she can do unaided, though when we went this week with the Rainbow Junior Arch Club, she needed a bit of hand over hand assistance to remind her what to do.

But I am not a fan! Especially as bowling alleys are usually hot, dark and noisy, and the sun always seems to be shining outside, where I’d much rather be. But a good life has to mean that I must try and enjoy B’s favourite activities, as well as bringing her to things I know we both enjoy – like music festivals. My eldest daughter always tells me that I can learn to love something if I persevere with it – she said it worked for her and green tea…. Going with the Club at a quiet time meant it was much more enjoyable for me, and I will try my best to go again.

Running in the Park

I haven’t taken part in an evening race for about 20 years, but I decided to be brave and try and run a 5K race pushing B on Thursday evening. It was organised by a friend of mine in aid of Snowflakes Autism, a local charity that helped one of my other children in the past.

It was like pushing a tank: her adult buggy definitely needs a service, and I might even ask Santa for a jogging buggy to make running easier still. But it was great fun and we even had some very welcome help along the way. And our time? 35 minutes and 22 seconds. Not too shabby ☺

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

R2BC at Mummy from the Heart

When the summer season is the same (but sunny)

Well almost the same…

This year the days and weeks have meandered by, barely changing with the seasons. My disabled daughter’s adult service is year round, which is good for both of us, and it means she still heads off happily on the bus from Monday to Friday to all her activities and her friends. Occasionally I bring her out for the day, mainly as part of the Rainbow Junior Arch Club summer programme. My youngest is at home most of the time, regardless of season, while my eldest works two jobs, and they are now year round, so her busy routine barely changes either!

Over the years I’ve looked forward to the holidays, dreaded the holidays, and now I barely notice them, as we slide into the summer months, apart from the sun and the sweat. Life just continues. There’s still appointments to go to, forms to complete, meetings to attend, friends to see. It’s comforting rather than cheerful, but comfort is something to be treasured too.

So what else is new?

I could tell you about the broken boiler, the building work that’s going well, but is taking 6 weeks instead of 2, and all the usual ups and downs of family life.

But let’s look at the good things instead, a new Marvel film meant a rare night out with eldest and youngest, a coffee shop meet up to discuss club business (and more), and more festivals to attend with B. This time the Rose Festival in Dublin’s Clontarf, which is about a lot more than flowers. She wasn’t on the best of form, but these certainly made her smile!

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

 

The tale of the nails, the maze, the box and the pillow

My disabled daughter’s social worker once asked me to name the one thing that would make our lives easier.

“A handyman,” I replied.

It was not the answer she expected, and she never got back to me with any contacts!

For now I continue to muddle through the endless breakages, breakdowns, problems and issues associated with living in a very old house, with some help from friends and family.

I was reminded of that conversation this week when the shower riser rail crashed to floor and luckily no-one was in it at the time.

I’ve fixed it for now with three nails and some Duct tape. I’ve no illusions about this being a permanent solution, but I don’t even know who to ask for help, as I don’t want to pay for a plumber and I’ve still no handyman. But feeling cheerful that it’s safe to use once again .

And I’ve a few more reasons too:

The Maze

Ok, so I wrote about our trip to Kildare Maze earlier in the week, but the excuse to get out and enjoy a road trip and some real countryside and fresh air made me giddy and happy too!

The Box

My disabled daughter B never fails to surprise me. I knew something was up when I heard the giggle that told me she was doing something ‘naughty’. Well not really, but I played along anyway. I’d sellotaped a box to her tray to help support her elbow and make it easier for her to feed herself. It wasn’t very successful idea. But when my back was turned she managed to pull it away, and began trying to open it. It took her 20 minutes to do what she wanted, due to her limited hand function, but eventually she succeeded.

one
If I can’t see you, you can’t see what I’m doing!
Two
Will this work?
Three
Or this?
Four
I think I’ve solved the problem…
Five
But I don’t actually want the silly pink tray
Six .png
At last, I’ve done it!

Sleep

It was obviously too soon to announce that my sleep problems were over. Too much much to do and B getting a bout of constipation meant I’ve been struggling to string a sensible sentence together for the past week. But not on Saturday. Seven hours of unbroken sleep and I had my most productive day in a long time – without ignoring the needs of the children either.

Hope you have lots of reasons to be cheerful too this week, and head over to Mummy from the Heart for more.

R2BC at Mummy from the Heart