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 

 

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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.

 

My new happy place

I climb the stairs slowly, trying to catch my breath. Sometimes it feels like I’m climbing towards the sun as the light usually bathes this upper floor. I pause at the door, but the studio is empty as usual, and a feeling of calm begins to flow gently through my limbs.

No music on this level, just whatever I choose to listen to on my headphones. No one’s watching, so I can do my own thing. Try out routines I’ve seen others do downstairs, practice my cartwheels and handstands, look silly: no one will know.

This is my new gym.

I’ve mentioned it before, but it’s taken a while to cement our relationship.

The weights room in the gym is where the hard work takes place. I take a tour of the machines until I feel completely exhausted, and there’s always other people around so I just do what I know. It’s noisy and hot and sometimes busy.

But few people bother with the studio upstairs.

I love that I can switch off completely. I don’t have to speak to anyone, and no-one is looking for me. There are no piles of dirty clothes or dishes demanding to be cleaned. No stacks of paperwork demanding to be sorted.

You’ll probably remember that my happy place used to be the beach, but not even the sound of the sea can drown out the negative thoughts in my head. Nor do I enjoy running alone right now for similar reasons, and also because I’m afraid of bumping into people and having to smile politely when they ask me how work is going, or tell me how great it is that I get a break while B is in her day programme.

So TG for the gym, and the chance to work it all out in peace.

Finding it, and enjoying it, is my main reason to be cheerful for this week.*

Gym Ballybough StudioR2BC at Mummy from the Heart

*I’m excluding the run at the weekend, which I will include in an entire piece on assisted running, when I get time…

Reasons to be Cheerful 9.11.18

Another reason I love this linky is because I think it actually makes me do cheerful things to make sure I have something to report! And I do…

Christmas Songs

I was giving out on Twitter on November 1st when my disabled daughter’s favourite music channel suddenly began playing non stop Christmas hits. But B is thrilled! I had no idea she would like Christmas songs so much, but as my eldest pointed out, they’re mostly upbeat, tuneful and happy, unlike much of the stuff she sees.

Books

After a break of about 6 months, I am finally reading again: I really enjoyed and learned from a book by an autistic blogger I follow: Aspies Hate Christmas by Amanda J Harrington. And now I’ve begun reading the Killing Eve series by Luke Jennings after watching the TV show

Funrun

I took a chance and entered a family fun run in aid of Brian Tumour Ireland with B, planning to use her running buggy without any arranged help. But people are very good and within second of seeing the two of us plus two buggies someone offered to assist, both before and after the run.

Shrek the Musical

Tickets were bought for this to celebrate a joint birthday for B and my friend’s son and we all went together to the theatre. Sadly the evening did not end well for B, but I really enjoyed the chance to dress up and make myself up too.

A New hat

Another bargain from Lidl that’s warm snug and fleece lined. I love it!

New hat

Going to the pub

I brought B with me to a nearby pub for an hour to have dinner out with friends. She felt very grown up, and all was well at home while we were gone.

Exercise

The more demanding the better, as it gives my stressed head a break. This week I went to my zumba class and for a run with my running group in the Phoenix Park: the autumn colours were stunning.

Phoenix Park

Power chair

B got to try out a powered wheelchair with specially adapted switches and she got the hang of ‘Green means Go’ within seconds. She will need a lot more training before she would be approved for a power chair, but it was a great start and I was very proud of her.

Powerchair training

More reasons to be cheerful over at Mummy from the Heart.

R2BC at Mummy from the Heart 

Out of My Comfort Zone

What do you do when you’re feeling anxious and depressed? Perhaps it’s not a problem for you. Perhaps you meditate or exercise or take a bath or just breathe. Me? I tend to curl up on the sofa with Netflix and maybe a glass of wine. But all that does is take my mind off things for a while. The stressful routine of a carers’ life does not work well for someone like me who thrives on variety and new challenges.

And while I can’t easily change my current circumstances, I can make little changes to my daily routine, and this week I managed several big ones!

Smallest first….

I cut my own fringe. I’m always afraid of making a complete mess of it, but no one has noticed so I think it will do until I manage to book an appointment with the hairdresser.

Meeting new people for world mental health day. Always scary. Will I make a complete eejit of myself due to nerves? Will I trip or spill my coffee? In fact I enjoyed myself and it was great to have a brief chat with others who are dealing with crises similar to the one in my own family.

Finally, I went wall climbing at the nearby Awesome Walls with my fabulous running group (on a day off). I must have the climbing gene, as when I was a small girl I climbed trees and rocks with no safety harness and often on my own. Not usually a problem apart from the day I fell into a hollow tree…  And some of my friends will recall that even last summer I seized the opportunity to climb a tree when no one else would. Awesome Walls looked absolutely awesome. And it was. I don’t think it will become another hobby because it’s quite time consuming and lacks variety, but as an occasional treat, bring it on!

Awesome Walls collage October 2018

So those are my three challenging reasons to be cheerful for this week. Check out more at Lakes Single Mum.

Reasons to be Cheerful 5.10.18

Once again I’m so thankful to Becky and Michelle for hosting Reasons to be Cheerful, and reminding me to look for them: This week has been mostly about self-care to enable me to keep going as a carer.

#MagicOfOctober – this Instagram challenge from theclotheslines.ie is distracting me from other thoughts as I try to find something to fit each day’s prompt.
Instagram #MagicOfOctober
Bargains – chocolate counts as self-care I think, and what could be better than a bargain 10 cent bar I found in my local Tesco!

Zumba – I know I’ve mentioned Zumba before, but dancing is proven to be good for the soul, mental health, and brain health too, and it’s the one weekly fixture I hate to miss.

Running – a lot of running happened this week. Beginning with an assisted run with B on Saturday at a nearby Parkrun, when we got to test a real running buggy, and I hope to blog about that experience properly soon. On Monday I went for a run along the Royal Canal with a pal, and yesterday I was absolutely delighted with this result from a training run with my Phoenix Park running group.

Strava Phoenix Park Run October 2018

Hope you have a great week xx

 

 

A light for when all other lights go out

It’s been another week of emotional earthquakes, and I don’t know if I’m numb or shattered in the face of it all. But on Monday a little light was thrown into the disaster zone of my life. A mystery parcel arrived from an unknown sender and when I opened it, I found it full of good things and encouraging messages, including this candle.

A light for when all other lights go out

I can’t tell you how much this thoughtful gift means to me. I will be dipping into it for weeks, and one day hopefully I can pass on the favor to someone else in need.

The package was actually sent by Michelle, aka Mummy from the Heart, the founder of the Reasons to be Cheerful linky that I have been doing since 2010. Finding positivity really does help to bring light when all else seems dark.

It also reminds me of the power of those people who brighten up or illuminate our lives in different ways.

My disabled daughter whose smile can light up a room – or even a stage – which she did last Friday when she made her acting debut at Dublin’s Helix Theatre, part of the cast of The Big Musical Mashup. I never thought I’d see my daughter on the stage, so huge thanks to her service for arranging it.

The Big Musical Mash Up

On Wednesday I attended the launch of a report designed to shine a light on some of the darker practices in Irish schools, and I was there to support one of the brave families who came forward to tell their story. Not a cheerful day, but hopefully a good day for the children of Ireland if this report leads to positive changes in the way that disabled children are treated. It can’t come soon enough.

Seclusion and Restraint report

Yesterday I brought a little light into my own life when after an emotionally difficult meeting I took myself off for some grown up time and attended an exhibition. Okay so it was an exhibition of wheelchair accessible vehicles, so still disability related, but everyone I spoke to was positive and constructive about my mad ideas for my next van, so I came home feeling hopeful that maybe one of my dreams can still come true.

R2BC at Mummy from the Heart