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

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Reasons to be cheerful 21.9.18

I removed my rose tinted blogging specs this week to mark the anniversary of the current crisis. To keep it real and tell it like it is. But I don’t want to lose the positivity on here either, so I’ve been scratching around to bring you some reasons to be cheerful this week too….

An unexpected outing

B and I plus a friend planned a flying trip into town to book theatre tickets as a birthday treat, but due to a mix up over the box office opening times we ended up hanging around for a bit of light shopping, dinner out in a local hotel, and watching a race on the water in Dublin’s Docks. B loved it!

Normality

A brief taste of normality when I attended another meeting of the Human Rights Committee at my daughter’s adult service. It’s empowering and encouraging to sit around a table with an inclusive group who are committed to making positive changes in the lives of disabled people.

Mornings

My morning alarm has been moved forwards by 15 minutes to 6am – always my watershed time, and despite a difficult week, I feel much more awake than usual, and I’ve got more done in less time so far today.

I’m also making an effort to appreciate the semblance of normality when my youngest is asleep – like the option to close internal doors.

Swimbags

As I trudged from a nearby housing estate to B’s service for her assisted swim laden down with a rucksack, two pool noodles, her special but awkwardly shaped float and a selection of towels in another plastic bag that had sprouted an inconvenient hole, I decided there had to be a better solution.

Thanks to Google, I found one. Its unfortunate name is Big Mummy Mesh Bag, and while I haven’t had the chance to try it out yet, I can confirm that it easily fits four towels and our swimming gear, so it’s looking good so far.

Birthdays

And finally, it’s my eldest daughter’s birthday tomorrow. She’ll be 26. I’m as shocked as you. But she’s grown into a mature, caring young woman who is determined to change the world for the better. I believe she will and I’m very proud of her 💕

R2BC at Mummy from the Heart 

If it works for dead saints, why not for me?

I can remember the years when my pillow really did smile at me. My bedroom was a cool, calm and comfy place. Going to bed meant climbing in, curling up and dropping off. Of course nights with the children usually meant that I was up and down like a Jack in the Box, but I sank into sleep every time my head hit the pillow.

Insomnia is a rare visitor here, like a wasp on a winter’s day. Even during the worst of the menopausal years I mostly slept, but not the recommended eight hours of sleep. It’s partly my own fault. After I left home, there was so much to do and see, so many people to meet, so much to experience and enjoy, that sleep just seemed like a waste of precious time. At College I would be up at 8am studying or swimming, in lectures at 9, manning the Rag Office at lunchtime, working in a bar in the evening, then on to a club followed by curry and home to bed at 4. Then I’d get up at 8 and do it all again…

I *may* have slowed down a bit as I’ve got older. But my children’s night time needs resulted in constant interruptions over the past 25 years anyway. Things were improving though, until this year. The crisis affecting my youngest has had some unpleasant consequences for me (as well as for him obviously, but I don’t write about him on here) and today is the anniversary of when it all began to go wrong. At first I thought the problem would be solved in a few weeks, then by the New Year, but a disastrous Christmas sent everything spiralling downwards, and I now feel trapped and traumatised in a very difficult situation with no good options, and nothing seems to be working.

I’ve been finding it hard to talk, to eat, to function, and also to sleep. The novelty of sleeping in the kitchen has long since worn off, though moving out of my lovely bedroom to sleep downstairs has worked out well for my disabled daughter. As for me, I now know every peculiar sound that fridges make in the middle of the night! And I’m also too accessible, as my sleeping corner is on the way to the shower room. This now means regular night time disturbances.

With these on top of all the other stressors, I ended up with night terrors so bad I would often lie awake from 2am, barely fit to cope the next day. Finally I went to my GP for help in August, and reluctantly went back on meds. A sticking plaster over a wound the system seems powerless to heal.

Something, possibly the bed, also led to trapped nerves in my neck and shoulder. As part of the solution I was told to stop curling up, and to sleep unprotected on my back. Ugh. I feel like a dead saint in a tomb. But if it works for them, I guess I’ll have to make it work for me.

And yes the meds plus the Calm app mean I am now sleeping a little bit better. But this can’t go on. Something has to change. After all, I’m not a saint, and I’m not dead either.

 

 

When visitors make magic happen

The magic starts with me: I am almost transformed into a domestic goddess at the prospect of visitors. Suddenly I can find the energy and incentive to clean the house from top to bottom.

My children rise to the occasion. They smile, they put their problems aside as much as they can. They enjoy the company. They make an effort, even when it’s hard.

There have been a few brave visitors this year, all of them have a made a huge difference, and made memories for us as a family.

Last weekend it was my brother’s turn, and for a couple of days life seemed almost normal.

Broken things were fixed. Lunch was eaten out. With dessert of course.

Banoffi Pie

There was a trip to IKEA that involved more than just eating meat balls!

IKEA

There were family dinners, I even made a hearty vegan salad one evening and there may have been a tear in my eye at the sight of the empty plates…

On Sunday we went to Farmleigh in Dublin’s Phoenix Park for Nepal Day. We were a bit too early for the celebrations, but B enjoyed showing the sights to her uncle.

Sadly the magic ended at 6.15 on Monday morning, but it was good while it lasted.

R2BC at Mummy from the Heart 

Reasons to be Cheerful 7.9.18

Once again I’ve been struggling to write anything positive. It feels false to suggest things are mostly fine here. When they’re really not. I don’t like presenting a misleading image to the world, that I’m a great mum who copes cheerfully with all the challenges faced by my daughter and son, when the truth is a little different, especially in relation to my youngest, who is still going through a very difficult patch.

But if I give up writing these posts, I may stop getting cheery reminders about them from Michelle and Becky. Even their weekly tweets force me to take stock and remember any good things that have happened.

So here’s a selection from the last while:

I’m still losing weight.

I finally downloaded the Calm App, and it’s helping me to go back to sleep when I’m worrying in the dark hours of the night.

The end of the summer means the professionals are back at their desks, and a trip to Accident and Emergency has galvanized the system to take action in relation to the needs of my two younger children. Hopefully we will see real results soon.

B now has a Personal Assistant for 8 hours a month on Sunday mornings. It’s a busy time for me, and now she can go out with her PA instead of watching videos.

Meeting a former neighbour by pure chance.  I hadn’t seen her for at least ten years and it was good to catch up.

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 …