A happy busy 24 hours #R2BC

Sometimes I think I really can do this job – or I could if I had just one disabled adult depending on me and not two!

But back to our 24 hours of fun…

It all began on Friday with an 18th birthday party for the son of a very good friend. We arrived and left early (B doesn’t do late nights) but in between my disabled daughter had a wonderful time head dancing to her favourite DJs (Mick ‘n Dusty), smiling and laughing at everyone she knew and soaking up the atmosphere.

She was able to sleep in a little on Saturday morning as I’d entered us for the 5K Great Pink Run for Breast Cancer Research, which started at 11am instead of our usual 9.30 parkrun start. It was a wet miserable morning, but that couldn’t dampen spirits in the Phoenix Park where the run was held. I’d contacted the organisers in advance and had permission to take part with a large jogging buggy, and while I had to park at some distance, when we got to the start line the organisers suggested that B and I go in front and begin our run a few seconds before everyone else. This worked perfectly as it’s easier and safer when runners overtake us, instead of me trying to push through the crowds. We finished in 30 minutes 38 seconds, helped by a lovely lady called Val who shared the work getting up the hills – of which there were several! B was a little quiet, but enjoyed the crowds and the cheering.

In the afternoon we paid a return visit to the Rainbow Junior Arch Club for disabled children for the annual Halloween party. B was delighted to be back, but even she realised pretty quickly that she has outgrown it. So we left a little early and went shopping, another of her favourite activities.

I can tell you that she had a very long lie in this morning!

So that’s my cheerful post for this week, hope all is well with you too xx

Reasons to be Cheerful 20.10.19 B Smiley COLLAGE

 

Advertisements

Lorenzo’s Last Laugh

STorm Lorenzo, Bastardstown, Changing Places

There’s not many people who would still be smiling at the end of a day cooped up in my old van, driving to a remote corner of South East Ireland in torrential rain, but luckily I was with three of those people yesterday. One was my lovely disabled daughter, plus a long time friend of mine and her daughter.

Why did we do this?

My friend lives in the UK, but recently discovered that her family’s ancestral home was a small townland in Co Wexford and she asked if I would like to visit it with her.

I would have to bring my disabled daughter with me, organise support at home for youngest, do the trip in a day, and check out toileting facilities in advance, but hey I like a challenge ūüėā.

Our visitors arrived on Friday afternoon, and we all enjoyed a really convivial evening with lots of food and wine before setting out early on Saturday morning and heading south under an ominous grey sky. Before long it began to rain, and then some. This week Ireland was hit by Storm Lorenzo, perhaps this was the tail end of the weather system?

But with relaxing company, the miles flew by until we pulled in at the Irish National Heritage Park for lunch. Lovely surroundings, tasty food, and most importantly, the only changing places toilet in the county.

B was thrilled when she saw it , and so was I: it was huge, clean and with everything we needed – a disabled toilet, hoist, changing bed, bins etc and it meant we could enjoy a whole day out without worry or damaging my back.

Next stop was a small village where we checked out the graveyard and beautiful church nearby for evidence of my friend’s family, but we found none. Then we spotted a much larger graveyard as we left, but decided to save that for another drier day!

I followed the twists and turns of the country lanes past farms, and cottages, through floods and potholes, until we drove round one last corner and came to a sudden stop in at the edge of a small cliff facing into a boiling sea, with brown sand and white foam, whipped up by the wild weather.

We stopped to breathe in the sea air, take a few photos of the townland, and then dived back into the van to get warm and dry.

Our last stop was Kilmore Quay for afternoon tea where we sat enjoying the hospitality of The Little Beach Cafe. And looked out at the rain lashed harbour as we fortified ourselves for the long drive home.

Saturday reminded me that you can always have good days no matter however difficult life seems.

Storm Lorenzo didn’t have the last laugh after all. We did.

 

It’s a hard knock life!

Those were the lines delivered by my profoundly disabled daughter B on stage in a Dublin theatre on Friday via her big Mack communication device. It was a proud Mammy moment made possible by the inclusive drama group at her adult programme. It was also a great show with music and dancing and some natural performers who were born to be on stage and everyone got a standing ovation at the end. A wonderful night and thank you to the organisers.

And that’s the first of my reasons to be cheerful from the past fortnight. Others include:

…Waking up in the mornings without my hip collapsing in pain and soreness. Not every morning, but most of them. Hopefully that injury is finally on the mend.

…A random act of kindness from a neighbour who stopped to help me when he saw me struggling to put the hub caps back on my wheels.

…I completed my 50th parkrun on my own thanks to my eldest daughter minding her siblings and I missed my parkrun personal best time by just 1 second, but I was happy to dip under 28 minutes. My PB was set in 2017 when I was younger and a lot less stressed, so perhaps I can actually beat it one day.

50th Parkrun Fairview

… Great fun was had at a 13th birthday party that B and I went to, involving a bouncy castle and an inflatable guitar!

…More guitars at a festival celebrating buskers on the same weekend. Lots of rain did not stop B and I having a wonderful day out.

…Inspired by a post from the current host of this linky, Lakes Single Mum, I made Beetroot Soup, and both B and I decided it was delicious.

…B managed a whole day in adult cloth nappies. We’re getting there!

Have a great week xx

R2BC at Mummy from the Heart

Reasons to be cheerful: Getting Organised

Life is still giving me a good kicking, and that’s making me more determined than ever to find – and engineer – some reasons to be cheerful.

September always feels more like the start of a New Year than January, with the end of the summer, and the beginning of a new school year, while job changes, car purchases and moves for me have always happened in the autumn, so there is a flurry to bills to pay and things to organise.

So ‘organised’ is how I plan to be this month. Over the summer, I’d been randomly tackling various jobs but on Thursday I decided to put together a full list, something I used to prepare regularly, but the last one I could find was dated March 2018. And I was pleasantly surprised to discover that despite the chaos and trauma of the past 18 months, I was actually able to cross off most of the items.

My garden has looked very sad for a long time, so on a visit to the local hardware shop I grabbed the first six pack of plants I saw, and shoved them in the weedy containers in the backyard, and it does look a bit better as a result.

Screenshot 2019-09-08 at 16.24.50

Earlier in the summer I made plans to ensure my old van would pass its roadworthiness test (called the NCT in Ireland), including surprising my local garage by booking a service and pre test check two months in advance! But I still did a double take when the technician gave me the certificate and told me she’d passed… Such a relief.

I’m also getting organised ahead of the prospect of empty shelves post-Brexit in November thanks to some ‘junk’ mail consisting of vouchers for my local Lidl store that gave me ‚ā¨10 back for every ‚ā¨50 spent, and I rarely spend that amount in Lidl so it was actually a challenge! But it’s enabled me to stock up on essentials: extra important when you care for two disabled adults with very specific needs.

Then on Saturday I got the opportunity to dust down my rusty professional skills when I attended the AGM of a national disability organisation. I always enjoy the chance to do something that feels like ‘work’, and yesterday I was able to bring my disabled daughter with me to the event, so there were no guilty feelings either.

Screenshot 2019-09-08 at 11.45.34

Finally I discovered why my smartwatch did not appear to be logging all my ‘steps’, I’d blamed its low price, but it turns out that steps are not counted when you are pushing something, so as I walked to and from the AGM pushing my daughter in her wheelchair, it seems I clocked up 15,000 odd steps yesterday, and not the 9000 that my watch recorded. Am feeling particularly virtuous now ūüėÄ.

Head on over to Lakes Single Mum for more reasons to be cheerful and have a great week xx

R2BC at Mummy from the Heart 

Summer of Smiles 2019

Summer of Smiles 2019
World Festival 2019, Alana Russell Memorial Run, our little bedsitting room, Zumba at Remember Us, Parkrun Marshalling, Meeting Place Arch Club, Hotter than July Festival in Smithfield, relaxing at a medical appointment

What does Summer mean if you don’t go on holiday and your children are young adults?

It could feel like a non event, I guess, the same of the rest of the year, but with a need for sunscreen and extra deodorant.

Some in Ireland are denying there was any summer at all – because there was no heatwave – yet I’m browner than I have been for years, and I’ve enjoyed the sunshine and showers, the cooler weather, fewer smelly bins, and less need to water the plants.

I made the most of it, and so did my daughter, as you can *probably* tell from the collage of happy smiles, yet the smiles were scarce at times, and it’s only in the last week or two that I felt she was really happy once again. I could not tell why she was sad, and she could not tell me either. But thankfully whatever was bothering her did not develop into anything significant.

It was also a summer of facing facts, of making choices when all of the options were less than ideal, of realising I have to find a better way to live, for myself and for the two young adults who depend on me. Time will be in shorter supply than ever, and there may be even less blogging and social media. However B’s place on her adult programme has now been made permanent, and that is one less worry, especially as she is so happy there, and the services provided make my life a little easier too.

Progress was made on some important projects during the summer. A lot of decluttering was done and, in related news, I did move in to B’s room, though I’m waiting for help to get it finished. It’s like a little bedsitting room now with two beds, two chests of drawers, B’s wheelchair and hoist, my desk, a telly and a comfy chair so I can sit with her in the evenings which saves heating the living room and means I don’t have to stray too far to help with whatever is bothering her during those hours. Our room is adjacent to the kitchen and B’s wet room, so it has almost everything we need close by. And as the weeks pass, I hope to keep making little changes that will make all our lives a little better.

Head over to Mummy From The Heart for more reasons to be cheerful:

R2BC at Mummy from the Heart 

Getting results for my disabled daughter #R2BC

August used to be the month when everyone goes on holidays, including most of the professionals who support my young adults, but not any more. It would be very ungrateful to complain about having too many appointments when so many families are fighting so hard to get anything, but it can feel a bit overwhelming at times!

However the appointments are yielding results (and information as per yesterday’s post).

Sleep

This week my disabled daughter attended a Night Positioning Clinic, which actually looks at all aspects of sleep, and finding a way to help her lie in bed that is both comfortable (so she can sleep) and therapeutic (so her body shape is maintained as far as possible, avoiding complications like scoliosis). ¬†A sleep system is anything that supports the body in bed. Ideally B would sleep on her back in her soft sleep system that she has had for a number of years, but that has not worked well for a long time. So this week she was given this giant soft loose ‘W’ cushion (a bit like a bean bag) to put under her legs and with that she’s managed to sleep on her back for 3 out of the past 4 nights. So hopefully this will be a breakthrough for her.

Nappies

B is still using the one adult cloth nappy that I bought! I don’t think they’re as absorbent as a disposable nappy, but I’m using it almost every day, and hoping to buy more soon. I still need the disposables as well for now, and was a bit anxious when I heard that the health service was introducing a new supplier, especially when the new delivery didn’t arrive on the designated day, but they did arrive the next morning, and luckily I was in at the time.

Buggy

If you’ve been following my daughter’s story over the past few years you may have noticed that many of the photos feature her in an adult sized buggy, rather than a wheelchair, even though I vowed after her 21st birthday to use the wheelchair as much as possible to reflect her age.

BUT the buggy is a system with all the accessories you would find on a child’s version. Wheelchairs are not designed for Irish weather, or adults who need portable trays, or carers who need a chair with lots of storage. I still much prefer the buggy, and it’s also needed in case the wheelchair ever breaks, which has happened in the past. So I was devastated when one of the essential cables snapped. And then I was told that the manufacturer was no longer supplying parts for this model (it’s more than ten years old) and none of the Dublin based disability equipment firms wanted to know.

No guesses where I got details of a company that might be able to help.. Yep Facebook yet again. For all its faults, it’s a lifeline for families like mine. So yesterday saw me trundling down the motorway to lovely Laois to visit LifeStyle Mobility. Everyone there was¬†so nice and helpful, and the buggy was fixed while I waited.

It was a rush to get it all done and back to Dublin before B came home, but I enjoyed the road trip, and even stopped to take this photo. It was great to get out of the city and get another problem solved too¬†ūüíô

Screenshot 2019-08-10 at 11.48.36
Lovely Laois

Have a great week xx

R2BC at Mummy from the Heart 

Some reasons to be cheerful

Okay so I was going to stay away, but reading this from the founder of Reasons to Be Cheerful reminded me of why I keep doing these posts, even if I don’t manage contentment as a result!

https://www.mummyfromtheheart.com/2019/06/the-importance-of-gratitude-r2bc.html

Be warned: today’s post won’t be stylishly written, as the demands on me and my time just keep escalating, and I learned this week that there is no end in sight. So every day is about survival – giving the two young adults in my care as much time, care and entertainment as I can manage along with household and disability management and admin. And bit of self care is needed too as you’ll see from the cheerful news below:

The week began and ended with my disabled daughter B and I volunteering at two different parkruns.

Screenshot 2019-07-06 at 11.46.48

Last Saturday night we both went to a 21st birthday party for one of her pals on her adult programme, here she is waiting for it all to get started.

Screenshot 2019-07-06 at 11.46.29

On Sunday her PA took her out for a few hours so I could reduce my stress levels by going out for a short run and also take youngest out to lunch for some one on one time with me.

A bad dream about the scary consequences of not tackling a household maintenance task ¬† spurred me into action on Monday morning as soon as B left for the day and I still haven’t finished the decluttering..

On Tuesday B and I went to Greenan Farm and Maze in Co Wicklow for another wonderful day out with the Rainbow Junior Arch Club. There’s so much to see and do there, from farm animals to nature walks to history brought to life.

On Wednesday morning I met friends for coffee at the lovely Lovely Food Cafe, while in the¬†evening I brought¬†B to a Zumba class when our usual Wednesday evening activity was cancelled. She was in tears going in – I still don’t know why – but started giggling with joy as soon as the music and dancing got started.

Thursday saw me running in the Phoenix Park with my running group, and an evening trip to Tesco when a kind young woman spotted that something had fallen off my trolley (I was pulling it and pushing B in her wheelchair) and crossed the car park to get it for me when she realised I was exhausted.

More kindness on Friday when a friend on holiday spotted the bendy straws my daughter needs to drink on sale in a local shop and promised to bring back a couple of boxes for her.

Kindness is definitely underrated, and being on the receiving end of it this week really helped xx

R2BC at Mummy from the Heart 

 

Reasons to be cheerful about inclusion

There was a huge pile of paperwork waiting for me when I emerged from my week’s break with friends and family. But the most urgent was¬†not household bills or disability forms, but the need to confirm the summer activities for my profoundly disabled daughter.

It got me thinking how grateful I am that she has a busy schedule, and is more likely to be tired than bored. And when she’s bored, she lets me know! So it’s something I try to avoid…

Her busy schedule depends on inclusion. It depends on accessible venues, the understanding of event organisers, and acceptance of everyone involved.

But sometimes we can still feel like outsiders. Sometimes we go to events and realise that they actually aimed at young children, not 22 year olds with the intellect of someone much younger. It can be awkward.

Events that are designated as inclusive can be better, like parkrun, with a special mention for Tymon Parkrun which explicitly welcomes disabled children and adults. We’ve been to other runs that have a connection to disability too, such as the AsIAm autism 5K or the Alanna Russell Memorial Run. At all of them we tend to enjoy support rather than stares, and we feel part of something, part of a community, and not outsiders being allowed to participate. As a concession.

B also enjoys membership of a number of disability clubs: The Rainbow 13+ Club, The Rainbow Junior Arch Club, Remember Us in Balbriggan. They practice inclusion too, because most members have mild to moderate disabilities, and have speech and are mobile. Unlike my daughter. But while not everything is obviously suitable for B, the organisers never have a problem if I want to involve her in some way.

You see my daughter is different even by the standards of the disability community, but parents, carers and the disabled young people give us a stronger sense of acceptance, belonging and understanding. And that’s a much more comfortable place to be.

Other inclusive disability events include the recent disco night Bounce, and AbleFest, a music festival both for people with intellectual disabilities in July. One she attended, one we hope to attend.

Shopping centres are not my favourite place, but my daughter loves them for the people and the buzzy atmosphere, and they too are becoming ever more inclusive, with plenty of space and now Changing Places Toilets too, with the hoists that are essential if she needs to ‘go’.

I’m not expecting every service or event or activity to be inclusive for everyone – as a parent to two disabled young adults with incompatible needs, I don’t believe that’s possible. Life is messy, we’re not all the same, there is no one size fits all solution to every problem and every need. ¬†Just so long as they can access what they need to survive and thrive, I’ll do my best to be cheerful.

Now I’m off to see what inclusive events are on today so my daughter and I can get out of the house, especially as the sun is actually shining as I type this!

Have a great week and head over to Lakes Single Mum for more reasons to be cheerful xx

R2BC at Mummy from the Heart

Reasons to be cheerful about friends

How do you define a holiday?

For me it’s become any extended break away from my various roles and responsibilities. A chance to snatch at the memories of the person I once was.

So you might say I’ve been enjoying a week’s holiday, with visits from family and friends, and my day out running the 10k Womens Mini Marathon sandwiched in-between.

I had a wonderful time with my friends, as did my young adults. Far too much fabulous food was eaten. We went to the beach, despite some gloomy weather, and wine and conversation flowed in the evenings as we talked and talked about the world outside disability.

Then there was the Mini Marathon. After months of injuries, I only had 6 weeks to train for it, and I was determined to finish in under 60 minutes, if it killed me. And with roastingly hot temperatures during the run, it nearly did. But I was absolutely over the moon when I crossed the finish line.

It wasn’t all good, because as soon as started to feel relaxed a pesky little virus spotted an opportunity and BAM! it flooded me with germs, but I managed to remain cheerful thanks to the wonders of modern medication…

Then on Friday it was back to full on caring duties of the emotionally challenging kind and I didn’t do too well! But I’m hoping to enjoy a relaxing weekend as I will be entertaining my disabled daughter by bringing her to a couple of local events within walking distance, making everything easier and less stressful.

Hope you had good week xx

R2BC at Mummy from the Heart 

Reasons to be cheerful about Family

Do you love social media? I do. But I don’t need it, and I’m more than happy to put my phone down when I have real life company. And sometimes I do, like this weekend’s visit from my brother and sister in law who live overseas.

(And thank you to the friends who contacted me to check I was okay when I vanished from Facebook: that’s what online support and friendship is all about).

Don’t get me wrong, I love chatting with my friends, the access to information and support, the connections I’ve made and the opportunity to learn new skills and to use my brain.

But this weekend was all about the conversations over coffee, and spending lots of time out and about making memories with my three young adults.

So on Friday we went to Bloom, Ireland’s giant Flower and Food Festival. We visited the Irish Wheelchair Showgarden and my disabled daughter B got VIP access to the exhibit itself.

This year we didn’t even have time to see everything, and only managed to test about half the free food samples on offer.

But apart from one shower, the weather stayed fine and it was a lovely afternoon.

On Saturday we had a big fry up cooked by my brother before eldest headed off to work, then he and my SIL took youngest out to lunch and then we went into town for a potter around before a roast dinner cooked cooked by yours truly. A lot of food got eaten, so maybe it’s just as well that I will get the opportunity to run it all off during today’s 10K Dublin women’s mini marathon, now that they’ve headed for home.

Hope you had a good week too xx

R2BC at Mummy from the Heart