The Cliff Edge

How did I ever find the time to write? I really don’t know any more, and I don’t know what is to become of this blog. The more things I cut out of my life, the more stuff is thrown my way. And that’s mixed with all the challenges that are not going away any time soon either. Sleep deprivation has recently been added to the mix, and I *may* have vented on social media as a safe way to handle the relentless pressure. But so far, every time I think this family is going to fall off the cliff edge, I have a good day, or even just a good few minutes. And that keeps me going for a little bit longer.

So what has cheered me up recently?

I’ve reduced my exercise schedule to four times a week, and one of those sessions is usually assisted running. Which means pushing B in her wheelchair. Many of you will know that we took part in the Alanna Russell Memorial 6K race on the  Sunday before last, and we both had a wonderful time at this superbly organised event in memory of a very special young girl who died last year.

Promises have been made and some action has been taken – B now has a Personal Assistant for 8 hours a month to bring her out on Sunday mornings. That’s a busy time for me, and now she will have something more entertaining to do than watching videos!

A home visit to test out a domestic lift and see how it works, and I can report that B had to ride up and down in it on her own, which only worried her at first. It’s a neat and unobtrusive solution that stores the lift in whichever room you are not using at the time. It can also be used to transport all sort of heavy stuff between floors, not just people in wheelchairs! It does mean that a two storey home really could work for us, though obviously not as well as a bungalow.

A lovely walk in the sunshine with a very good friend and the chance to test out the fare at the Gourmet Food company near Portmarnock.

Malahide Beach summer 2018

A Rainbow Junior Arch Club trip to Imaginosity, an interactive children’s museum in South Dublin, including a van disco on the way, with loads of dancing in the back! It wasn’t really suitable for B, but I was on duty for the Club and she enjoyed being my helper and watching all the children having a great time.

Imaginosity B collage

Hearing my daughter laughing with delight as she is wheeled up the path and home after another great day with her friends at the Central Remedial Clinic..

More reasons to be cheerful over at Lakes Single Mum.

 

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Being productive, being brave, and being cheerful

The house has been calmer this week, and that overwhelmed feeling is beginning to recede. I’m finally crossing items off the to do list, and even little things like finding the time to clean the cooker hood feels like progress.

I also began clearing the attic, as a small step towards my plan to downsize from this house. It was not a pleasant or easy job – lugging very dirty and dusty boxes through the attic hatch, down the step ladder and the stairs, and out to the shed – but it was satisfying. I was super cautious, and wore googles and a dust mask, so it’s just as well that no-one rang the doorbell! Then hidden among the boxes I found this…

Bridal headpiece hairband
Memories of a very significant and happy day! Even though it all went wrong later.

I said no to a few more requests this week, helping my productivity and reducing the guilt of not being available at home.

When I heard a radio ad for the 100th edition of Now That’s What I Call Music, I realised it would make a perfect unbirthday present for B. I could’ve added it to her gift list for October, but I wanted to get her a few treats. Just because.

We also raided Penneys (Primark in the UK) and B got a couple of T-shirts, and I bought a cute green jacket – the first time in ages I’ve bought something I wanted, but didn’t actually need.

Finally, I watched in amazement last Saturday as my social media filled up with images of blogging friends in swimwear. It was another tribute to Kate Sutton and a way to publicise a Go Fund Me for her sons. Obviously I was NOT going to do anything like that, or so I told myself over breakfast. By teatime I had my most popular Instagram post ever. I think Kate would’ve appreciated that, and it shows how many women were inspired by her positivity and bravery, and her impact will surely live on for many more years, and I think that’s a good enough reason to be cheerful for this week.

Swim wear
R2BC at Mummy from the Heart 

Reasons to be cheerful about friends, family and more

The last few weeks have been an important reminder of the difference it makes when you talk to someone, tell someone, stop bottling everything up. It began during the Great Escape to Kerry, when the floodgates opened after a couple of glasses of wine. Since then I’ve not been able to stop!

And family and friends responded in ways I did not expect at all 😍

Just a few hours ago these lovely flowers were dropped in by a friend I haven’t seen in real life for a long time. I answered the door with my apron and a scowl expecting someone selling something, but Claire was gracious and we agreed that we MUST meet for coffee soon. And a commitment made in a blog post is totally binding, right?

Flowers

My eldest is home for the week, and jumped at the offer of a proper family Sunday dinner with a roast chicken and all the trimmings. The leftovers have kept me in meals all week (note that I’m still a human dustbin, my mother’s influence from living through the War, and maybe reading Stig of the Dump too many times…).

A trip to the cinema with eldest also happened amidst a fair bit of chaos and I can’t tell you how good it felt to get away from it all for a couple of hours.

Helen, a longtime friend from my London days in the 1980s encouraged me to join in with her 30 day plank and squat challenge – just the kind of thing that helps distract me and gives me a sense of achievement when I feel like I’m failing at everything else. You can find out more at Fit Fab Fifty.

Plank, Me, 2018

Finally I have to pay tribute to blogger Kate Sutton (@IAmWitWitWoo) who sadly died after a stroke earlier this week leaving a gaping hole in the blogging community that formed around 2010. Her huge personality lit up my twitter feed and her hilarious and honest accounts of dating in your 40s were always an entertaining read. My heart goes out to her two sons. Yet in the middle of all the sadness, there was an upside – her death brought me back into contact with some of the bloggers and former bloggers that I’d lost touch with over the years, and to hear how well their lives are going is a reason to be cheerful.

Have a great week xx

R2BC at Mummy from the Heart 

A butterfly with fragile wings

Progress is a beautiful thing, but in this house it’s fragile and easily damaged. Progress means hours when I feel almost normal again, when my anxiety levels go down, and everyone else in the house perks up too. And yes I’m having to write in riddles and hints, but I did promise that this blog would focus mostly on my disabled daughter B and myself – and not on my other children – so I can’t tell you exactly what’s been happening.

But I can tell you about my other reasons to be cheerful…

My weekend away with B, that I wrote about here.

Kerry

Rain. Only a little bit of rain, but I was so glad to see it, as I was beginning to worry if it would ever return! I know that sounds crazy, but extreme weather events have become the norm even in Ireland, and nothing seems certain any more. Not even rain. (Of course some people were complaining.)

Getting out for the whole day to attend a country funeral to provide support to a couple of friends. It was a risk, but everything at home was okay while I was gone. On the same day I agreed that B could go to the circus after hours without coming home from her day activities first. And that went well too.

I bought a different newspaper at the weekend to begin doing crosswords again. All the challenges this week (to counterbalance all the progress) meant that I am still trying to finish the first one. But it’s a start.

B and I joined the first outing of the Rainbow Junior Arch Club’s Summer Programme last Friday and we had a wonderful time exploring the Airfield Estate and Farm in South Dublin. We visited it once before a couple of years ago, and I wrote about that visit here.

Sculpture Airfield Estate

B and I went house hunting again, and with new bungalows as rare as pink butterflies, I decided to look at new two storey houses with large downstairs toilets and room to install a lift. And we found one. Of course the developer is only interested in selling to first time or cash buyers, but I’m not giving up just yet! At least I’m finding options.

But the butterfly of hope is fragile and elusive, and I’m always afraid it will fly away if something changes. This week though I will try to be cheerful and enjoy the way things are right now.

R2BC at Mummy from the Heart 

Being cheerful about being over 55 (as I reach 56)

This was not an easy post to write😂😂

Life has changed since I wrote my optimistic birthday post of 2017, and I feel and look a lot older than I did back then: Perhaps my age is now showing, or perhaps the stress of the past 7 years – and especially the past 9 months – has finally caught up with me.

I stayed up late on June 19th, to eke out the last few hours of being 55, and my birthday began like any other day, apart from a couple of cards and presents (I have a very small family). But then I opened Facebook, and the birthday greetings began to roll in, and they really do make the day feel special. By teatime I had also acquired two beautiful bouquets of flowers, a thank you cake from a neighbour who just happened to drop it in today, and I’d also enjoyed a late and leisurely pancake breakfast with a friend. So that was good. No plans and no expectations. My birthday, my way.

Birthday Collage 2018

And that’s the main benefit of being over 55, I can give myself permission to do what I want (not forgetting all my caring duties of course!) and say no to people and pressures that I know I don’t need in my life any longer.

I can wear what I want. No-one really cares what I look like now, and my adopted uniform of black on black – with the occasional splash of colour – helps me to feel in control of my wardrobe at least.

And if you live in Dublin, there’s financial benefits too, including the Council’s Passport for Leisure Card*, which means I’m now going to a new gym for the bargain price of €8 a month!

If I think of any other benefits, I’ll definitely let you know. I’m all for having things to look forward to. And on that dubious grammatical note, I will end this birthday reasons to be cheerful. Have a great week xx

More Reasons to be Cheerful over at Lakes Single Mum.

*The Passport for Leisure Card provides discounts on a wide range of activities, not just gym membership

 

 

Reasons to be Cheerful 15.6.18

Another busy fortnight is almost over: fewer appointments and less training, but a lot of catching up to do! I’ve reconnected with my morning running group in the Phoenix Park, returned to my Zumba class, and successfully attended two disability-related Annual General Meetings with my disabled daughter B. Plus a physiotherapy appointment for my trapped nerves, and that’s on top of my caring duties.

Most of the really cheerful stuff took place over the two weekends (including a bank holiday here in Ireland on Monday 4th June).

Inclusive Zumba – last Friday night B and I went to a charity Zumba event. It was wheelchair accessible, loud and fabulous. She mostly watched and laughed, but I managed to include her in some of the routines. We’ll definitely be going to more events like this.

A simple trip to town – sometimes I haven’t the energy to deal with all the unknown challenges that B and I may face if I try to bring her to one of the many events held every weekend during the summer. And sometimes the familiar is just as enjoyable for my daughter, so last Sunday we spent a couple of hours wandering around Dublin City Centre and she had a great time..

Bronwen, Dublin City, 2018

Bloom – the previous weekend we had a wonderful day out at one of Ireland’s largest Festivals. You can read about the fun we had here..

Bloom 2018

Parkrun Volunteering – B and I gave out the tokens at the finish line of our local Parkrun recently. I enjoyed it, but B didn’t seem to think it was as entertaining as actually running around the course!

Mini Marathon – B had lunch with her sister while I pounded the streets of Dublin with 30,000 other women on Bank Holiday Sunday. Sadly my training was not sufficient to cope with the oven-like heat, and my finish time was 57.57 for the 10K course, slower than I’d planned. But I had great company at the start: not just my current running buddy, but also my training partner from the 90s, it was lovely to meet her again and discover that we are both still running. You can see us in this 1994 photo of the start line.

Mini Marathon 1994 Irish Times

For more reasons to be cheerful, head over to Lakes Single Mum, and have a good week xx

 

 

 

 

Reasons to be Cheerful 1.6.18

Once again May was a ridiculously busy and sunny month, and I spent far too much time cooped up in a hot car driving to twelve big appointments for the two young adults I care for, formerly known as my two younger children. All these appointments took place during the hours when B is supposed to be attending her adult day programme, or my ‘time off’ as some people mistakenly describe it! I’ve also been distracted by other issues, but today I’m back with a positivity post 😀.

1. Funding for B’s day programme that she loves has been confirmed for another year. It’s not been made permanent yet, but I will keep hoping.

2. A few firsts – B voted with assistance in the recent referendum, she attended an inclusive Zumba class, and she thoroughly enjoyed being pushed around the inaugural AsIAm 5 kilometre Run for Autism. As you can see.

As I Am 2

3. I baked for the first time in ages, a healthy carrot and banana bread recipe that I clipped from a newspaper. It was delicious.

Banana and Carrot bread

4. As a lone female householder, I regularly get ripped off by the people I pay to do the endless maintenance jobs that are needed to patch up this old house. This week I got fed up with waiting and fixed a badly done job myself. It seems all I needed was a screwdriver and a paintbrush – to be used separately though! It’s good to feel competent occasionally 😍.

And that’s it for another week, hope you have a good one xx

R2BC at Mummy from the Heart

Conversion

It’s been a week of achievements, but I was finding it hard to convert them into cheerfulness. And then Saturday happened.

It began around 6am, as usual. Followed by a tough but enjoyable Parkrun at 9.30am.

Parkrun May 12 2018

Home again to collect youngest and head to his activity, B and I eating a packed lunch in the sunshine with good company again, while we waited.

Then back home so B could use the toilet, and gathering everything I needed to help my friend run the end of year party for all the special needs children and their families at the Rainbow Junior Arch Club. Exhausting but rewarding.

Finally there was an 18th birthday party of a family friend and BOTH my younger two came with me. We weren’t able to stay that long, but long enough to enjoy the pièce de résistance, a delicious birthday strawberry and white chocolate cheesecake 😍

For all this to happen I had to get my daughter and her wheelchair in and out of my van 16 times in the one day and hoist her 10 times (on my own which is illegal for anyone else).

More proof of why I need to keep fit and strong, so I can continue to give my disabled daughter and her siblings the life they deserve.

The rest of the week consisted of a bank holiday and four days of appointments, including B’s annual neurology and orthopaedic appointments. Reasonably good news from both of these: her seizure rate may have slightly improved and her physical condition has not worsened, so no change to medications or her exercise regime. Steady as she goes.

There was a big meeting on Thursday, which I can’t really write about on here. But if the promises made are fulfilled, they could make a big difference to the future of my children and my ability to cope too. Everything crossed! But I was so exhausted after all the appointments that I didn’t have the energy to feel cheerful, at least not until Saturday evening. Then the conversion happened, and suddenly I’m seeing last week in a completely different light 💙

R2BC at Mummy from the Heart 

Lovin’ where I live #R2BC

I know I often talk about moving house, but on a mild spring day like today, I don’t want to move too far.

And I was planning all sorts of faraway trips over the weekend, but after the stress and angst of internet outage (fixed by an engineer remotely this morning) and the panic when my van broke (fixed by me at lunchtime*) I felt too tired to do more than take B for a short walk around the local area. It ended up as a long walk, and I decided to take some photos to show you why I still love where I live.

We began the afternoon’s adventures by sharing coffee and cheesecake at the Lovely Food Cafe. Well, she shared the cheesecake, I didn’t actually share the coffee!

Then we wandered down towards the Park, with B getting giddy from the sugar, and we admired the local cherry blossom tree.

We strolled past the National Botanic Gardens and enjoyed looking at the tulips, and a very pretty magnolia tree.

We passed by one of the local traditional pubs…

Hedigan's Pub

… And then we headed for home via the path along the Royal Canal: There were boys jumping into the deep water between the locks, as they have done for decades, and an old woman feeding the birds, but I didn’t think it right to photograph them…

It was a lovely afternoon that we both enjoyed, and a great reason to be cheerful for this week.

R2BC at Mummy from the Heart

*I will get it checked by a professional after the weekend, just to be sure.

Reasons to be Cheerful about Undiagnosed Children’s Day #UCDsuperhero

My daughter is undiagnosed. She is no longer a child in age, but I still feel a bond with all those families who are wondering why their child is different and desperately searching for answers. The current thinking among some disability communities is that you should just look at your own child and ignore labels, but that presupposes that every parent knows what to do when faced with a barrage of unexpected medical, physical, intellectual, behavioural, and sensory differences. Most parents struggle at times with their typical children, and few would criticise them for consulting parenting books and media experts for help. So it’s surely understandable that when you have a disabled child, you want answers, you want a diagnosis, you want a roadmap, you want tailored advice, and you want to find your parenting tribe. And today is Undiagnosed Children’s Day to raise awareness of the additional unique challenges of raising a child with no diagnosis.

I’m still searching for a diagnosis and I enrolled my daughter  in the DDD project a few years ago. No answers yet. But it’s not something that really worries me at this stage. I’ve learned that you cannot predict the future, no matter how much information you have, or how hard you try to control it. I’ve also learned that no manual or advice will ever be guaranteed to help your child, even when they do have a diagnosis. I know how hard it is, but it will be easier if you can find a way to let go of your expectations and go with the flow instead. My daughter is proof that life goes on and can be wonderful too.

While my daughter has severe to profound physical and intellectual difficulties, she is healthy and happy once her needs are met. She’s a joy to be around, and has found her place among a group of more able young adults in a day programme nearby. She has a busy life in the community at weekends.

Thanks to the much maligned Facebook, I have a big network of other parents living similar lives to myself, some with sons and daughters a little like mine. We face similar challenges and can support and advise each other. There is an organisation for families living with an undiagnosed child called SWAN UK (open to families in Ireland too) and it also provides help, resources, support and a community. So you could say that we’ve both found our tribe too.

21 years after that tiny 875 gram preemie baby took her first breath, she is very much alive and loving life and spreading happiness all round her, and despite the lack of a diagnosis, I am now confident that I can meet her needs, once she and I get enough support. So many of my worries about her have been melted away by her beautiful smiles. She really is a #UCDsuperhero and that’s my reason to be cheerful for this week.

Undiagnosed Children's Day 2018
More reasons to be cheerful over at Lakes Single Mum.