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 

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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 hairy reasons to be cheerful!

Once upon a time I wrote a post called ‘My life in bad haircuts’, but it stayed in drafts. Too trivial? Not funny enough? Too much about me? Anyway I remembered it today as I paid a very rare visit to an actual hairdressing salon, where I felt totally pampered especially as I got picked for a free hair treatment that included a massage chair and footrest while my hair was washed! Clearly much has changed since I was last there..

And my hair looks okay too. Also a big change from the life time of embarrassing hairstyles revealed by my collection of old photos – some shown on the right hand side below.

My life in bad hair cuts

It all started well. As a young child everyone loved my thick shiny hair, swung in ponytails or bouncing in plaits. Then puberty happened, and suddenly I was too old for plaits and my hair had turned into this dry, coarse, bushy, uncontrollable mess as I morphed into an ugly version of Kate Bush almost overnight.

I bet the local hairdressers cursed whenever I booked an appointment, knowing they’d send me away looking worse than when I arrived. I scoured the Jackie magazine for tips: I remember pouring eggs and olive oil on my hair, but it just stuck to my head. And the excitement when I first spotted a blue plastic bottle labelled ‘hair conditioner’ in my local Boots. Sadly that didn’t make much difference either.

In my late teens and early twenties, I was far too busy to care, so I wore it short and dyed, which luckily for me was the fashion in the 1980s. It looked fine from the front, but the side view was not so good, due to my unfortunate possession of an egg-shaped head and a large nose.

As a student I was always looking for cut price haircuts, with pretty desperate results at times and there’s nowhere to hide when you get a really bad cut, except under a hat. Which is what I did after one really disastrous cut which left me with these blue and pink feathery bits hanging from my crop. I went straight into the nearest department store and bought a hat and then legged it to the student union hairdresser to get the dangly bits removed!

Then I tried growing my hair long. With layers. And that made me look like an unkept lion (see photo haha).

I got it cut short again after giving birth to eldest, but then I stupidly began flirting with middle-aged lady helmet styles. Not a good style for me either, due to the aforementioned head shape and nose..

I’d almost given up on ever being happy with my hair, when along came the GHD hair straightener. It was finally able to give me what I’d always wanted: shiny flat hair, and I swear it’s one of my most precious possessions.

As my stylist complimented me today, I realised how lucky I am to still have a full head of thick hair with very little grey and the tools to manage it too. Time has stood still for my mane, in the best possible way.

I’ve a big family day coming up soon, hence the visit to the hairdressers. Of course I may still look like an extra from the Walking Dead due to the ongoing crisis, but at least I will have good hair. Hopefully something like this..

Walking Dead but good hair

R2BC at Mummy from the Heart

Calm

The weekend stretches ahead, my two girls are up, my youngest is still asleep and all is calm.

No parkrun today – the buggy is damaged. No plans at all. B and I both wake at 6.30. Habits are hard to break. I enjoy a leisurely half hour with coffee and twitter. She stretches and sings along to the songs on the telly.

I check the weather, pick the clothes, and give thanks for the overnight rain glistening damply on the roof.

I get both of us showered and dressed.

Breakfast is made and I push B’s chair to the table. With tweetdeck and the telly for company we eat companionably together. One spoonful for her, one for me. She does most of the work, and just needs a tiny bit of support to get the spoon from bowl to mouth. It’s great to give her that control, but sometimes she makes a mistake. This morning she silently choked for a split second. No panic here when that happens. I know she can cough it out herself (perhaps with a little pat on the back). Three minutes later and she’s reaching for the spoon again.

Concentrating hard. It’s not easy to use a spoon when your hands are tiny and your arms are short and so so heavy…

Then a snippet of Britney singing floats across the room from the telly and B raises her head instantly. But it’s only an ad.

Back to the bowl again.

Finally it’s all gone. A quick drink – straw required – and a wipe round with her pink flannel and we’re done.

Time for a bit more music telly, and head dancing while I chat and catch up with eldest before she goes to the gym.

It’s been a tough week. I’m giving myself permission for a bit of downtime with extra coffee and my laptop.

But then I see what’s happening in the city today.

B might like that, I think.

And I’m back in logistics mode. Could we make it? Would she like it?

I’ll let you know later …

 

 

Real life is better

I still enjoy blogging, and I still enjoy social media, but both have changed hugely, and so has my life, and that means more online changes around here.

Probably less blogging. I have plenty of posts in draft, but I may never finish them, and I don’t want to put myself under that pressure either.

There will be more updates on the Facebook page, which you can find here if you’re not already following it:

https://www.facebook.com/oftencalledcathy/

I don’t like the recent changes to Facebook, especially the removal of the option to have friend lists, but it’s where most of my real life friends are, so it’s where I need to be. And I’m Facebook friends with almost all my online friends too.

I’ve mentioned before that Instagram was my new favourite place for a while until they changed the feed. Now I’m losing interest, so little of the activity feels genuine, except from my real friends. Who are on Facebook too!

Pinterest is my scrapbook and I ignore What’s App, Snapchat, Google Plus and the rest of them.

That just leaves Twitter: it’s chronological, and I can still use friend lists, but today the option to use hands free streaming (no scrolling required) on third party apps was removed, so I can no longer have it on in the background while I do other things. I had been chatting on Twitter more than anywhere else, and I loved catching all the breaking news. But that’s all ending as of now it seems.

Back to Facebook then. And that other old fashioned option – real life. I’m trying to reach out to my friends and meet them more often in real life. Because my love affair with social media has soured.

Real really is better. I get that now.

 

 

The Great Escape

It felt like some crazy dream. A road trip across the country with my severely disabled daughter in 30 degrees of heat, on the day the schools broke up.

For a weekend break.

My first break for seven years.

I didn’t believe it would actually happen until I pulled away with the van stuffed with enough emergency items to see B through the Zombie Apocalypse, never mind two days in Co Kerry. Of course I forgot most of my clothes…

When I got the invitation my instinct was to say thank you, but I just can’t manage it. As usual. But I have wonderfully persistent friends. They had a house with a downstairs room where B and I could sleep, as well as the essential downstairs toilet. They didn’t ask can you go, they asked when can you go .. And then my eldest said of course she could manage everything at home for a couple of days.

And so I found myself on Friday afternoon cruising down the motorway, sunglasses perched on my sweaty nose with the music turned up and B dancing in the back.

Almost five hours later we arrived to a wonderful welcome and food on the table. And so it continued – I barely lifted a finger, except to look after myself and my disabled daughter, and obviously that wasn’t always easy in a strange house not designed with wheelchairs in mind. Apart from that it was everything a break should be: great company, good food, beautiful scenery and glorious sunshine. Poor mobile coverage forced a digital detox, but I didn’t really miss it as there was always someone to talk to and something to do.

Killarney looked stunning in both sunshine and clouds, and there were plenty of wheelchair friendly rambles and places to visit. On the Saturday night we went out to dinner at a hotel overlooking the lake, and there was no hassle including a severely disabled young adult at the table. In fact no fuss was made at all, she was treated the same as every other guest. It was very refreshing.

The break reminded me again that with a little help, it IS possible to have a good life with a severely disabled young adult.

Trip To Killarney Collage June 2018

 

She’s Gone

And just like that, she’s gone. Twenty five years of parenting gone in a flash.

Bags hanging at every angle, squeezing awkwardly through the porch door, keep cup in hand, out into the grey early morning light.

Heading away to begin a new job.

There was planning, shopping, grumps, nerves, anticipation, a hug or two and a final goodbye.

She’s left behind a well-used Tassimo, a huge collection of plastic food containers, bags and bags of old clothes that she no longer wears but cannot bear to throw away just yet, and an empty room. I will have to get used to that.

My first born taught me to become a good enough parent, she taught me that parenting is fun and frustrating by turns, rewarding and exhausting, transforming and fulfilling. I made many mistakes, that she teases me about now, but said nothing about back then.

And of course I’m going to miss her, especially the chats we had every evening when she arrived home from work, bursting to tell me all about her day. But I’m not sad. This is the natural order of things. This is how it’s supposed to go. This is what all those years of parenting were for. She’s launched herself into the world. She’s chosen her big adventure. I know she’s going to pour every ounce of energy and determination into it. I know she will succeed in making her mark.

I love her and I’m proud of her, and also she’s back on Friday for the weekend ….

Megan as a toddler

 

 

Nostophobia

Nostophobia is the fear of returning home. Okay, okay, so I’ve been self diagnosing again, but without any meaningful help, it really is up to me to try and work out why I’m finding life so difficult. The why is the first stage in tackling the problem.

You see I had time to think today. I was able to leave the house for an extended period – 4 hours – during which time I went to my weekly Zumba class, and then flew drove very fast (but not faster than the speed limit) to Newry to post a parcel that I was unable to post in Dublin. Don’t ask. Apparently lots of and lots of new restrictions have been brought in since I last tried to send a parcel anywhere. And the price has gone stratospheric. The cost of the diesel for the trip was probably funded by the difference in postage between Dublin and Newry, *sigh*.

Anyway, I’m digressing. As usual. I know have a bad habit of trying to explain everything, whether you’re interested or not.

Back to the Nostophobia. I’d never heard of it, but it fits some of the issues that affect me. After an extended period away from home today, I began to feel normal again. Able to function, talk properly, drive safely, and make sensible decisions.

That all changed when I walked in through the front door, and my anxiety levels immediately went off the scale. I always said that this house would be too much for a domestically challenged person like me to manage on my own, and so it has proved. On top of that I am now caring for two young adults with conflicting needs, and coping with the ever mounting pile of household and disability administration. My ‘to do’ list just gets longer and longer, and that’s without even considering the stuff that other people do, like switching utility providers to save money, redecorating or taking up knitting!

When I’m in the house, I’m constantly under pressure and constantly on edge, there’s so much stress here, and within these walls are so many bad memories.

It’s another reason to look for a bungalow, as a fresh start might be just the cure I need. I want to say no to Nostophobia and yes to a home where I can breathe a sigh of relief when I put the key in the door. Where my home is a sanctuary, where I can relax and feel safe.

New house, new start, new me… Sounds good, dontcha think??

 

The Dentist

Not everything happens when it should, especially with the seismic shift to adulthood when you have a daughter with severe disabilities. So much change is happening so fast that some things just slip off the calendar, and you barely notice.

And so it was that B did not go to the dentist for 3 years. In my defence, I used to get a text reminder every year from the local health clinic to make an appointment, and that stopped without warning on her 18th birthday.

My recommendation: send out a letter explaining this, and advising what to do next.

Since I didn’t know what to do next, I consulted Facebook – as you do – but wasn’t particularly happy with the replies, and so the issue of a new dentist for B got put on the long finger. For a long time.

But New Year Resolutions and all that meant I decided to tackle the family health checks. And I remembered bringing B to another health clinic one time for an emergency appointment to get her teeth checked when she was very upset for no apparent reason – and of course she can’t tell me why.

I rang them, and explained the situation.

“No problem,” I was told.

It wasn’t urgent, so I was happy to get an appointment in March at a time that suited – just after B finishes her day programme of activities and before the rush hour begins 😀

She was noisily delighted to see me, no phobia of dentists for my happy daughter!

After a 10 minute mobile disco dancing session in the car (as you do), we drew up outside the clinic, currently in a run down sprawling old building, but not for long, as there is a shiny new replacement about to open next door. But for me it’s not about looks. It’s about accessibility, and how much stress is involved in the appointment.

On those criterion, this clinic scored top marks:

We arrived early, there was free parking, including disabled parking.
It’s wheelchair accessible.
The atmosphere was calm, and there were some free seats.
Reasonably clear instructions for new or occasional visitors.
A very short wait! Which is always good.
A lovely dentist and dental nurse.

I’m in awe of dentists who check my daughter’s teeth, as she normally bites down hard on anything you put in her mouth, including fingers. Yet somehow these trained professionals are able to check her teeth without complaint or upsetting her. I don’t think she actually enjoyed the experience. But she certainly cooperated.

Best of all, her teeth and gums are healthy. Despite her love of cake and chocolate, it seems she needs no dental work at all.

I don’t feel quite such a neglectful mother now!

R2BC at Mummy from the Heart