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 💙

Screenshot 2019-08-10 at 11.48.36
Lovely Laois

Have a great week xx

R2BC at Mummy from the Heart 

When life takes away lemons

I used to love lemons. They evoke long languid days in the Mediterranean sunshine, gin and tonic sipped at fancy events, lemon cakes and Thai curries. Now I no longer eat them due to reflux, and you would rarely find them in my fridge.

Lemons are just one of the items I no longer enjoy from the supermarket of life.

And until this week, there was a terrible uncertainty over what else was on the banned list. Now it is much clearer.

But back to fridges for a minute (and if you’re a long time reader you’ll know I bought a new fridge recently after the old one began leaking into the floor, the final straw after a long series of transgressions..)

The question is: what do you do with left over food: I know people who scrape every plate and tip the remaining contents of every serving dish into the bin straight after eating.

But what if you can’t get to the supermarket to stock up with all those lovely fresh ingredients?

What if money is tight?

If you have food allergies?

If you were brought up to be frugal, like me and put them all in little labelled bowls and boxes for later?

You see based on what I was told this week, there will be no trips for me to the fancy supermarket of life with aisles devoted to exotic holidays, fulfilling careers, trips to visit family, shiny new affordable homes, or girls weekends away.

The life I have now is apparently what I can expect for the foreseeable future, because the State trusts that I will not abandon the two disabled young adults in my care, no matter what.

I was trying to find a positive way to view this information when I thought of my fridge. As you do.

I thought about how I will be stuck with the leftovers of life, like the stuff in the fridge at home.

But that’s not as bad as it sounds. You see I always enjoyed the challenge of trying to make something tasty from an odd assortment of leftovers, so why not look at life the same way? Yes there’s a good chance I will never get to visit Paris or any of the other places on my bucket list, but I can visit everywhere within an hour or two of Dublin. That means city, country, mountains and sea. Can anyone really ask for more?

My disabled daughter and I share so many interests, while youngest is happy enough at home for short periods. Both are reasonably good sleepers right now, which makes a huge difference.

I can help other people online and in the real world, but I’m not going to kill myself trying to beat down the resistance to change here. I’m done with that.

I’m going to be more selfish, do more for me, stop saving for a rainy day – look outside, that day is here. I refuse to become just another downtrodden carer. You can keep your lemons, I’ll be making carrot cake instead…

A better view

It’s not been a good day, and I scrawled a ranty angry post about the parent carer trap that I’m sure you don’t want to read, especially as most of it poured out when a friend dropped by..

So instead I will look forward to the long weekend, even though today’s abandoned paperwork will be hanging over me like a dark cloud.

Bank holiday weekends can be a bit lonely with everyone away, but thanks to social media I have a list of events that B and I can enjoy.

Expect photos, and a better view than this …

A better view