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 …

 

 

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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

The Waiting Room

It’s all honey blonde and pinky red tones with shafts of sunlight making geometric shapes on the floor and warm curved walls to hug you as you sit and wait. But there’s also creaky hard seats and noisy floors that echo with the rhythm of shoes and boots and runners making a cacophony of sound that ebbs and flows.

The door opens and in they go. The door shuts. You’re left outside to wait. Your stomach churns as you wonder how the appointment will go today. You try to read something, write something, concentrate on something, anything that will distract you from fixating on what is happening behind that implacably closed door.

You listen to the sounds of others waiting: cranky children, the lower murmur of women chatting, the rustling of paper and doors opening and closing, voices raised in excitement as gossip is exchanged. The ring of phones and the coughs and splutters of the sick and old.

You sit and wait and wait and wait. How did it come to this?

You’ve become the person who knows almost nothing, but is expected to do almost everything.

Then the door opens. All looks well. Phone away, fix welcoming smile on face, drive home. Another hour spent in the waiting room is over. For another week.

NB I’m cheating slightly as this post is not about my disabled daughter.

 

You Too versus #MeToo

I’ve kept my mouth shut so far on #MeToo, but foolishly I cannot seem to keep quiet any longer. That’s because of the generational divide that seems to be opening up between women my age and older, and the younger generation on the topic of sexual harassment under the #MeToo campaign.

I am sad to see so many older female icons like Catherine Deneuve being attacked for expressing an opinion on the #metoo campaign. But I actually wish they would stay quiet, or at least be a little more nuanced. Because warning of potential consequences of the #MeToo movement is fairly pointless. No one knows. The main consequence of speaking out is that the media are now salivating at the prospect of portraying this as a battle between different groups of women (just like the stay at home versus working mum debate) and this has the potential to totally obscure the original point of the campaign. So please can everyone calm down and stop rising to the media bait.

Yet here I am, speaking out too.

Because the world was a different place when we were young. And perhaps we have internalised misogyny, as was said on twitter this morning. But there was no Stay Safe programme in schools to help us work out what was acceptable, there was no internet to tell us, and we didn’t confide in our parents in those days either. We just dealt with it as best we could, and we’ve been dealing with it for 50, 60, 70 or more years, but not necessarily in ways that would be acceptable to today’s women.

Sexual harassment on the street? Change the way you dress. An older man puts his hand on your leg when you’re eight? Keep out of his way. Factory production line stops and cheers as you walk through in your suit and high heels like they’ve never seen a woman before? Hold your head up high and concentrate on not tripping over. Work colleagues bring you to a lunch time pub with a stripper? Make them sit outside.

These are some of the challenges I have dealt with over the years. I haven’t forgotten them, but I don’t think they traumatised me.

And remember I have always been socially awkward, always jealous of those women (especially Liverpool and Dublin women) who always seem to have a smart answer for any man who dared to give them grief.

Hopefully if the #metoo campaign succeeds, it will make life easier for all women, in all situations. But I don’t think that misogyny will completely disappear, I think it will just go underground and women will still need to be ready and able to cope with it at times.

Relationships between younger men and women may well change as a result of this campaign, but hopefully it will all work out in a positive way: every time I see a young dad hugging his child to his chest in a sling, my heart lifts at the changes that have already happened.

At the same time, I think that most of us older women have the confidence and experience to continue our relationships with men in the way that we choose. We shouldn’t be criticising the younger generation for the changes they want to see.

It’s true that the behaviours that negatively affected my life are not covered by the #MeToo campaign as far as I know, and I do not write about them publicly. But perhaps if the campaign really succeeds, it will ultimately improve all human behavior. And that would certainly be a very good thing.

Festive Greetings

Happy Christmas, Festive Greetings, Happy Winterfest, or however you celebrate, have a wonderful day.

Thank you for all your interest and support during 2017, it is much appreciated.

For 2018, my dearest wish is that all my family, friends and readers could find a way to enjoy life as much as my very special daughter. Here she is showing how it’s done…

Me abd B, Christmas 2017

When you can’t make lemonade out of lemons

When I began this blog I hoped it would be a place to celebrate all that’s positive about caring for a young disabled adult. As you know, life has a way of skewering the very best of intentions. Doors are still being slammed in our faces, and I’m feeling exhausted, ill and overwhelmed most of the time. So I’m planning to take a proper break over Christmas – the phones are not manned and there’s no pressure to follow this up or chase that down. There’s no one there, everything is on hold until January. I’m determined to take a break and see if that clarifies what I should do next. I may write, I may not, I’m not going to pile any additional pressure on myself.

Even the (far too small) Christmas tree is sitting forlornly in the living room, undecorated and unloved. And the news on new bungalows is that no way have we any hope of purchasing one now and probably not in the future either.

Forlorn Christmas Tree

The Christmas tree will get done. The essential things will get done. My two girls are doing well, and a night out to see Star Wars has been booked, so I’m hanging on to those things even as life keeps pelting lemons at me. And since I’m now allergic too all things citrus, I can’t even make lemonade!