A new toy and other reasons to be cheerful

It began with a torn page from a Sunday paper. Life was looking up in the summer of 2017, and I was determined to be brave and try new things. Also I needed a way to check how fast I was running, so when I read about this Kickstarter project for a budget smartwatch, I took a chance and backed it. As you know, it paid off, and I got my smartwatch in time for Christmas. It did everything I wanted and more, and quickly became an essential pice of kit. No more missed calls or messages, which can be so frustrating when you’re trying to organise something important for your children. So I was not happy when the watch broke for good last week. But I was happy when I found a bargain replacement that looks a bit like an Apple Watch and costs just £70. It also has great reviews, the battery is supposed to last for 45 days, and it appears to do almost everything on my wish list. So far I’m delighted …

In related news the wireless earphones that were free with my first smartwatch are still working, even though the watch is not.

Reasons to be cheerful 13.4.19

And I’ve a few other reasons to be cheerful too:

Friday was the last day I knew for sure I would have an empty house. So I made the most of it by tackling a head wrecking house maintenance issue. But during the breaks between stages I sat down and read a book instead of rushing around doing other chores.

With worries about the future mounting again, I also took a break earlier in the week to go for a short walk along Dublin’s seafront to clear my head.

A lovely message from a reader with a severely disabled child who found my blog  and said it gave her comfort for the future.

Oldest and youngest chose takeaways for dinner last Monday giving me time to bring B to the Rainbow 13+ Social Club in the evening, which she loved.

Our wonderful home hairdresser made us look presentable again.

When the health service gives you a week to respond to a letter or you will be struck off the waiting list and your busy but kind-hearted GP rings to make sure you’re not away and are able to respond.

After a long break, it looks like I will get two trips out to the cinema over the next couple of months with eldest and then a friend.

Finally yesterday was a wonderful day of inclusion for my disabled daughter, beginning with the park run at Tymon and ending with a 50th birthday party. I can tell you she went straight to sleep last night!

R2BC at Mummy from the Heart 

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If all else fails, go shopping

I’m not promoting pointless consumption of stuff here, honestly. It’s my disabled daughter you see, she’s getting more demanding. She’s no longer content with quiet evenings involving videos and chatting to me as I potter between the sink and the cooker and the bins and the washing and well, you get the picture.

But there is one activity that always keeps her happy, and that’s shopping. She will brighten up as soon as I start to put her coat on, then laugh in happy anticipation as I push her and her wheelchair out of the house, through the two gates and into the van.

Once we get going, she is in charge of the music, and will head dance enthusiastically to her favourite songs — or give out loudly if a tune she dislikes is played.

The excitement builds up even more when she recognises the store or shopping centre, and if it’s big, bright and busy, well that’s even better..

(And as many of you have realised, she is very good at letting everyone within earshot know exactly how she feels!)

However daily shopping trips in the early evening rush hour traffic are not exactly an efficient use of time, and can be tiring and annoying, but I have realised there are benefits for the whole family.

I have fond memories of the days when I could do one big shop for the week. When I was in charge of the menu, the food and what everyone ate. But now my three young adults eat different things at different times, and forget to tell me when stocks of their favourite foods are running low. So I need to buy food and other essentials on most days anyway: if B and I shop in the evening, I have more time during the day to get other things done that she cannot help with, or would not enjoy. It’s almost a win/win. So I think four nights of shopping this week counts as a reason to be cheerful, don’t you?

Head over to Mummy from the Heart for more..

Screenshot 2019-04-05 at 21.58.55

R2BC at Mummy from the Heart 

Looking for Silver Linings

I’m afraid it’s been another of those weeks, and my heart goes out to several friends who have suffered loss and bereavement, but I’m determined to find some cheerful silver linings and turn some of the bad news into good…

The bad news is I don’t have the time – or interest – to do the garden any more and so it looks like this ↗️.

The good news is it means I’m helping to save the bees apparently.

The bad news is I will have to miss my beloved Tuesday Zumba class for the next few weeks.

The good news is it’s because I’ve finally got some counselling appointments. And I hope to get my Zumba fix from another class or event.

The bad news is my ribs still hurt a bit.

The good news is I have a great excuse not to bother with the vacuuming. I have to ‘rest’ and not do activities that hurt me.

The bad news is the beautiful disabled friendly bungalows B and I saw this week are on sale in the wrong place, at the wrong time. Probably.

You see I’m coming under pressure to defer any house move for now. It is difficult to turn down the chance to live somewhere that B seemed to love (see photo above), with everything we need for the future – apart from a ceiling hoist – already in place. Admittedly I am not convinced by the location – it’s a 20 minute drive from anywhere we might want to go, and public transport is almost non existent.

The good news is we enjoyed a lovely relaxing afternoon in the country including a pit stop at the local cafe where we felt very welcome.

The bad news is I’ve been super busy this week, and am feeling completely overwhelmed again

The good news is that between all the appointments and usual madness I am managing separate outings with each of my young adults. Even if they are for activities like house hunting that may come to nothing!

Let’s hope that next week is better, and head over to Lakes Single Mum for more reasons to be cheerful.

R2BC at Mummy from the Heart 

Two toilets in One week! #R2BC

It’s been another busy fortnight with 16 appointments of various kinds, plus fun activities at the weekend, including lunch out with friends, which B now really enjoys. One of those involved our first time to visit a commercial Changing Places toilet and I was delighted with how easy it was to use.

B got a new lightweight GaryB Wheelchair Blanket for Spring (just seen in photo) as her legs get so cold so easily now that she needs more than a pair of leggings covering them when she goes out.

I’m injured, which means enforced rest and filling the time with other things to ensure my two youngest do more than just look at screens. Starting by volunteering at parkrun tomorrow, instead of running..

Today though was a very special day as B and I headed out to North County Dublin to the official opening of the new premises of the hugely successful Remember Us Club that provides a social outlet for some 200 disabled children and adults, as well as their siblings and families. In a stunning achievement, they have raised enough funds to buy and kit out a permanent home for the club and all its activities and events. And it also has a proper Changing Places toilet, so we had to check it out!

We also got to meet a number of families who used to attend the Rainbow Junior Arch Club that B and I have been spending our Saturdays afternoons at for the past 18 years… It was lovely to catch up, and thanks to R for all your help and support and bringing over some badly needed coffee…

So that’s it for this week, more reasons to be cheerful over at Lakes Single Mum. Have a great week xx

Remember Us opening collage

R2BC at Mummy from the Heart 

Reasons to be Really Cheerful 8.3.19

Everyone in this family is doing better at the moment, and I have managed to be really cheerful at times over the past fortnight.

I’ve enjoyed more sleep, more control over my time, so I managed to organise a passport for B, get to the dentist and optician, choose some badly needed glasses for night driving, and begin some major and important projects.

There was a trip out, coffee and lunch, all with different friends, one of which involved proper make up, straightened hair, and my good coat!

Saturday nights will henceforth be film nights with youngest, and so far we’ve watched The Princess Bride and The Godfather.

Most entertaining moment was eldest getting a cheque in the post and asking me what she was supposed to do with it.

I’m making the effort to whip out the mobile phone when I spot something I like and getting a few one shot wonders like these:

I wrote something about changing the world and apparently it has already changed someone’s behaviour – as they say, we may not think we have the power to make a difference, but actually we do, and that’s a very cheerful thought indeed.

Have a great week xx

R2BC at Mummy from the Heart

Nothing to Say?

I was going write a post about how I can’t write anymore. There’s lots of reasons: I have to leave so much out, I’m no longer sure about sharing our lives, and I can’t tell you much that’s new in any case.

As you know I won a battle, but the aftermath means that youngest is still the focus of family life at the moment. Plans have been disrupted and many meetings attended, but in between there have been little treats – a walk in the cemetery, finally going for coffee with my running group – and hours of calm at a time, which are very welcome. Still it feels as though the real action is happening on a big stage, yet all I can tell you about is how the audience respond, and mundane tales from the box office and stage hands.

But then this week I was reminded that most of the blogs I read are the ones rooted in personal stories, and the everyday lives of families that I have followed with interest for years, so perhaps I’m wrong, perhaps readers crave relatable details of ordinary lives too?

So instead of letting this blog slide, I do plan to update it when I have time, and especially for reasons to be cheerful posts. So here are some for this week:

My disabled daughter B has a new PA who is in a girl band and likes cake and shopping. What could be more perfect? As before, the PA will be bringing her out on Sunday mornings when I’m busy with chores.

A new battery has arrived for her temporary power chair so training can start again. This is important, because no decision will be made on her final wheelchair until her team have decided whether or not she is able to use a power chair. Until the decision has been made, it’s risky to buy a new van (which we need) and it’s also difficult to make any decisions about a new house until I know the size of chair that has to get through doors and down hallways.

B’s communication device – a big Mack – broke in 2018, but she should get a new one today. In case you’re new here, the big Mack allows her key worker to record a message about her day and then she presses the button when she gets home to pass it on. I then record a message about her evening for her to tell her pals at her day programme the following morning.

Last week I brought down some old CDs from the attic, to feed Bs need for music in the car, because there’s STILL no FM stations that play my kind of music! Anyway we popped up to Tesco yesterday, and I discovered that she is a huge fan of Irish rock, and was noisily dancing all the way there and all the way back to the likes of Thin Lizzy, Van Morrison and An Emotional Fish 😀.

We also tackled the scary challenge of getting passport photos done on a Sunday afternoon in town: sadly none of the chemists could help because of B’s needs, but a photography shop did a great job. Such a pity that smiles are no longer allowed though!

Last weekend also saw B and I back doing Parkrun, though I couldn’t get her to smile for the camera: I’ve adjusted her Moviecol as I think she has been struggling with constipation, something she hates, thought it never stops here enjoying cake 😍.

Have a great week xx

Reasons to be cheerful 22.2.19

R2BC at Mummy from the Heart 

 

A battle won

Parenting one or more disabled children involves many unexpected roles, including becoming a fighter. In an ideal world a family would get information, appointments, a plan and advocacy support at the same time as a diagnosis. But that almost never happens. Instead families are pitched against each other for scarce resources all fighting a system that seems determined to deny our children what they need and deserve. But sometimes persistence pays off and I have to report that I finally FINALLY won the battle to get effective help and support for youngest.

This is giving me a bit more free time (less than you might think though!) so I’m doing a bit of catching up, from boring stuff like filing, paperwork (and finding lots of things to chase up, oops!) to fun stuff like my first proper run since I got injured.

Reasons to be cheerful 9.2.19

There’s also been lots of sleeping, apart from one night when my disabled daughter B was awake from 3am. For the first time ever I tried hoisting her onto the toilet in the middle of the night, but that wasn’t the problem. She wasn’t upset, just chatting and singing along to the music channel on the telly. Perhaps there was a full moon, I forgot to check!

The house has been calm and sometimes empty: less demands on me means more gets done, and time for the occasional leisurely bath instead of quick showers.

Of course I left the house a lot too: I caught up with friends, carried on bungalow hunting, and began the round of medical checks that are pretty essential once you’re in your 50s… And it seems that my eyes are healthy. Phew!

I know this is just a lull, and there will be more battles ahead, but for now I intend to enjoy the peace.

Sharing with Reasons to be Cheerful hosted this week by Mummy from the Heart.

R2BC at Mummy from the Heart 

Waiting

January is the waiting month, isn’t it? Waiting for the cold weather to end, waiting for the bank balance to improve, and waiting to feel better now that Christmas is over and life seems a bit grey and dull. Here I’m waiting for something to happen for youngest – the child I don’t write about on here. I’ve been waiting for months and months, and while I wait my weeks are filled with phone calls and meetings, and more phone calls and more meetings. We’re so close, too close, I’m stressed about the waiting, and stressed about what may actually happen. I’m doing a lot of hibernating too. Hiding from people for fear I will just rant unstoppably, or cry, or both.

The endless meetings are all part of the process, and at least they keep me busy so I can’t brood too much, so do they count as reasons to be cheerful? Does my hip injury count, which means enforced rest from running but more Zumba?

Also in Zumba related news, we’re dancing Flamenco this term, which really excites me as I always had an interest in Spanish music, right back to my school days when I prepared a dissertation on Zarzuelas – to the astonishment of the examination board in those pre internet days… Note to self: must put visiting Spain on my bucket list!

This is possibly the first year ever that I’ve got to choose my own calendar – don’t get me wrong, I love getting calendars as presents, but it was an enjoyable novelty to pick one myself. Of course there was too much choice, but in the end I plumped for a Lonely Planet calendar which has gorgeous pics of places I’ve never heard of and may never visit.

tasmania lonely planet calendar
Tasmania

My disabled daughter B rejoined the local 13+ club for teens and young adults with disabilities this week – it was a disco with now famous Mick and Dusty, and she loved every minute of it!

We also visited the Rainbow Junior Arch Club and I took these happy pics…

bronwen arch club jan 2019 collage

Being injured means I can salve my conscience about not doing enough volunteering for parkrun. Last Saturday B and I went to Tymon and took photos, and we hope to do Tail Walker at Fairview this weekend.

Finally B showed she’s always determined to make progress, and this week I caught her picking up her drink using her very weak left hand. She really is an inspiration 😍

For more reasons to be cheerful head over to Lakes Single Mum.

R2BC at Mummy from the Heart 

Reasons to be Cheerful 5.1.19

Okay, so my middle of the night Twitter meltdown is over for now, thanks to eldest minding the fort so I could do a parkrun on my own for once. I really appreciated the break from the worry of why the Irish Health Service will not help my youngest, and began to feel a bit more cheerful about the weekend ahead. And even though I’m struggling with a hip injury and sleep deprivation, I managed a reasonable time and came first in my age group 😀

fairview parkrun january 2019 #loveparkrun

In other good news, I began the year with three beds to choose from every night! Except I don’t really have a choice right now, but the thought is satisfying.

I may not get to gigs, but B and I always find the best free music events, like this excellent guitar band we stopped to listen to on Dublin’s O’Connell street. Judging by her reaction, B thinks they should be big stars one day. Now why didn’t I take a note of their name?

guitar band

On Wednesday B started back at her young adult programme, and my gym opened up for the new year, and then on Thursday, finally, her new hoist arrived. No more spinning round and round or stubbed toes for B, and it’s portable, so that’s part one of operation escape for the weekend in place.  More on that to follow, hopefully!

Head over to Lakes Single Mum for more reasons to be cheerful.

 

Some Festive Reasons to be Cheerful

The reasons to be cheerful team of Lakes Single Mum and Mummy from the Heart are taking a well deserved break during December, but I find myself in serious need of some positivity, so here is this week’s happy post..

Running

I haven’t been able to do Parkrun for the past two weeks, but I did dash out for a stress fuelled 5K on my own last Saturday morning, and clocked my best time of the year (27 minutes and 18 seconds).

On Thursday I headed for the Phoenix Park after a very difficult meeting, and running with my running group helped me to calm down. I can’t thank them all enough.

Winning

I rarely win anything, but I do occasionally enter competitions or buy raffle tickets and this week I won an umbrella and some toys!

B won at inclusion by being given the opportunity to work towards a modified version of the Gaisce Award, though she wasn’t too impressed that the presentation did not include cake! Gaisce – The President’s Award is awarded to young people in Ireland between the ages of 15 and 25 who participate in a set of activities for a certain period.

Christmas

One of the more serious house problems got fixed in time for Christmas, and eldest has let me know that she won’t be working on the Big Day. Also B’s wonky wheelchair issue has been sorted for now as she arrived home from her Day Programme yesterday with a replacement base, so she’ll be safely seated over the holidays. Phew!

Weekend Outings

I’ve now retired from my 14 year involvement with the Rainbow Junior Arch Club (for children with special needs, disabilities and autism) so the Christmas Party last Saturday was more than a little poignant. B loved it as usual, and I was slightly overwhelmed with the presentation at the end. Thank you, it was a pleasure helping to make so many children so happy for so many years, and I hope the club continues to thrive for many more years to come.

B, M and I visited a Christmas market at the CityNorth Hotel on Sunday, just a short road trip away, and we will certainly go back again – lots of great value and unique gifts, lovely food and music too.

So Happy Christmas to all my readers, and I’ll raise a glass to avoiding Grinches, if I can. See you on the other side.

Some Festive Reasons to Be Cheerful 2018
Phoenix Park pic, Grinch bauble, Gaisce presentation, post 5K run, market, and B in party mode.