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 

Mercury Rising

So the mercury was rising in the thermometer of my life this week as hopes were raised all over the place, so much so that one of my good friends suggested I do the lotto too. Just in case I’m on a winning streak.

I can’t tell you most of the news, though I may put something on Instagram if all goes well.

The week was busy too, and not with depressing form filling or cleaning or other happiness draining activities. There were stressful but positive planning meetings, a lovely late Christmas present from one of my wonderful friends, a successful and happy Powerchair training session with my disabled daughter B, Zumba, a visit by our lovely home hairdresser, assisted swimming with B, a walk in the Phoenix Park with a friend, followed by an evening seminar on Independent Living.

Then there was Friday.

On top of my caring duties and 2 hours of phone calls relating to youngest, I managed the following:

– collecting a parcel with a new charger for my watch. I also did a factory reset, and it’s working properly again. Hooray!
– attending another painful physio session for my hip injury that has prevented me from running for the past two weeks, but I’ve now been given the go ahead to start again. Yippee!
– visiting a new housing development that didn’t meet my daughter’s needs, but I was told there may be some ‘single storey dwellings’ in phase 2. Excited much.
– dashing back into town to buy some adult nappies as B has run out and there’s no delivery till Tuesday, and I saw some pigeons out of the corner of my eye and took a random photo of them chillin’ on a window ledge. Love it when that happens.
– sleeping for 8 hours with only 2 interruptions. Though I did have a sleep hangover afterwards. Apparently the cure is another good night’s sleep, so here’s hoping I can get one again soon…

reasons to be cheerful january 26th 2019

So those are my reasons to be cheerful for this week – head over to Lakes Single Mum for more.

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.

 

On New Year’s Day

2018 ended with the very sad news of the death of a wonderful woman and former work colleague with whom I’d reconnected on Twitter in recent months. That made it extra hard to feel any sense of celebration about a new year.

January 1st began at 3am as usual with the now nightly clean up due to the issues affecting one of the members of this household, then the morning started with a beautiful new year smile from my disabled daughter B. It should have been enough to put me in a good mood. But it wasn’t.

This will be a milestone year : my youngest turns 18 in April and I will then be the mother of adults. But no prospect of an empty nest or a chance to live my own life.

Instead my parenting duties seem more intense and overwhelming than ever. I feel so trapped by it all, and crushed by the knowledge that I’m the only one who can engineer an escape plan that ensures a better future for all of us.

Yet I felt bad about feeling bad at the start of a new year that many will not see.

So I did what I have to do most days, and chose an activity to boost my mental and physical energy and endurance to do all that has to be done.

Today’s choice was another parkrun with B, with a more civilised starting time of 11am.

In the afternoon B and I actually stayed in the house: we put together my first playlist since 2015, and I may as well continue my blogging tradition of sharing the songs, though free wordpress won’t let me embed the videos:

We are scientists – after hours

Ash – Annabel

Green Day – good riddance

Bastille – Pompeii

John Newman – love me again

Heathers – November

Oasis – the importance of being idle –

Super furry animals – golden retriever

The stoat – try not to think about it

Carter USM – the only boy

Then we made a non alcoholic tiramisu to use up more of the left over naughty food in the fridge, and after dinner B ‘supervised’ me doing the laundry and putting the bins out followed by one last video before bedtime.

Between her bedtime and 3am I got some free time for Netflix, some sleep time and some worrying time about how much longer I can keep going.

But at least this New Year’s Day I did more than just chores and supermarket shopping trips.

There’s more to life than cleaning showers was what I used to mutter under my breath when the student flat cleaning rota was being given out. And I guess I still feel the same today.

As for 2019? It’s going to be a bumpy rollercoaster ride of a year, but as my new necklace says

Do no harm and take no shit

Words to live by for the months ahead!

How was your New Year’s Day?

 

Thank you

2018 was a difficult year for two of us in this family, and I am very glad to see the back of it. It nearly broke me. But it also reminded me of all the good people in this world, as I have been supported every step of the way.  Too many to mention, from family who took a break from their own problems to visit, to real life friends who were always there for me, to on-line friends who sent presents and took an interest in everything that happened to this family, to all those people who organise the activities I have enjoyed throughout the year, and all the times my disabled daughter has been included. I even achieved a couple of firsts, with a weekend away with B and some friends to Co Kerry, as well as a morning spent wall climbing.

So a huge THANK YOU from me and mine to you and yours, and for 2019, I would wish that everyone who is struggling enjoys the same level of support as I do.

My hope for 2019 is that I will see results from all my hard work over the past 12 months, but I also know I face some difficult decisions and hard choices. Sometimes you have to take risks, and I’ve seen what happens in families that do nothing, where they just keep trying to cope. Until they can’t. I’m not going to let that happen here.

2018 highlights

 

Baby, it’s dark outside

Velvet black skies, even at 7am. Just the glow from the orange street lights out the front. Not a sound, except the drone of the fridge.

Wide awake for the night shift, sleep did not return, and I gave up before 6 to see in St. Stephen’s Day in the calm of early morning.

Pacing around the house quietly, tidying this and cleaning that. Creating a new normal with all the lovingly given Christmas presents. Finding new homes for them. Squeezed onto shelves, squashed into drawers.

Meantime outside the darkness wraps around the red brick terraces like a new blanket, while the people who live in them sleep off the excesses of Christmas day. It’s giving so many the chance to rest, nest and reflect.

We’ve survived another year as my eldest always says. And we survived Christmas Day too, with the help of my girls and a dear friend. Today we look forward. There’s a week to fill before the manic chaos of normal life returns. Decisions, decisions.

By 8, I am joined by the early birds tweeting, and a lone bin lorry rumbles its way down the street – not ours. Our overflowing bin will have to wait until the weekend..

The first rays of light are spilling over the rooftops. Soon, very soon, my disabled daughter will be the first of the household to wake, and my time will no longer be my own.

And then I hear a giggle from the next room. She’s awake and she’s happy. It’s going to be a good day.

Baby it's dark outside

 

 

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.

 

Falling into the Mental Health Abyss

We’re all told to mind our mental health, so practice self care and mindfulness, to talk about our problems, and pace ourselves. But what happens when that is not enough? What happens when you beg for help and it simply isn’t there?

I am dealing with this situation in relation to a family member right now; it is completely overwhelming and a huge struggle. It’s hard to think clearly about the problems here, let alone define the problems with the system, but others who’ve faced this before do understand and can see clearly, and it was comforting to read these words of wisdom from Jackie (@ja54kki) this morning, and please follow her on twitter.

When we had a major crisis here in the past , the services were basically the police. I remember asking an Educational Psychologist years ago if CAMHS (Child and Adolescent Mental Health Services) provided an emergency service – and the answer was ‘no’. There’s the gap that needs to be filled.

The police can only do so much. Accompany you to A&E if needed, and/or stay until things have calmed. Paramedics can help with injury and arrange emergency medication through an emergency GP. Then, you’re left. No support in place.

I believe there is an emergency social services number for a bed, but how the hell could you place an already stressed and anxious young person in a strange setting with strange people? Where is this “ wraparound” care I used to hear about? More meaningless jargon.

There needs to be support in place to come to your home in an emergency. Very often a fresh face helps to de- escalate. Not rocket science. We need a service like this desperately, we shouldn’t have to use police services in this way. Not fair on them or us. 

What do you think?