Nothing to Say?

I was going write a post about how I can’t write anymore. There’s lots of reasons: I have to leave so much out, I’m no longer sure about sharing our lives, and I can’t tell you much that’s new in any case.

As you know I won a battle, but the aftermath means that youngest is still the focus of family life at the moment. Plans have been disrupted and many meetings attended, but in between there have been little treats – a walk in the cemetery, finally going for coffee with my running group – and hours of calm at a time, which are very welcome. Still it feels as though the real action is happening on a big stage, yet all I can tell you about is how the audience respond, and mundane tales from the box office and stage hands.

But then this week I was reminded that most of the blogs I read are the ones rooted in personal stories, and the everyday lives of families that I have followed with interest for years, so perhaps I’m wrong, perhaps readers crave relatable details of ordinary lives too?

So instead of letting this blog slide, I do plan to update it when I have time, and especially for reasons to be cheerful posts. So here are some for this week:

My disabled daughter B has a new PA who is in a girl band and likes cake and shopping. What could be more perfect? As before, the PA will be bringing her out on Sunday mornings when I’m busy with chores.

A new battery has arrived for her temporary power chair so training can start again. This is important, because no decision will be made on her final wheelchair until her team have decided whether or not she is able to use a power chair. Until the decision has been made, it’s risky to buy a new van (which we need) and it’s also difficult to make any decisions about a new house until I know the size of chair that has to get through doors and down hallways.

B’s communication device – a big Mack – broke in 2018, but she should get a new one today. In case you’re new here, the big Mack allows her key worker to record a message about her day and then she presses the button when she gets home to pass it on. I then record a message about her evening for her to tell her pals at her day programme the following morning.

Last week I brought down some old CDs from the attic, to feed Bs need for music in the car, because there’s STILL no FM stations that play my kind of music! Anyway we popped up to Tesco yesterday, and I discovered that she is a huge fan of Irish rock, and was noisily dancing all the way there and all the way back to the likes of Thin Lizzy, Van Morrison and An Emotional Fish 😀.

We also tackled the scary challenge of getting passport photos done on a Sunday afternoon in town: sadly none of the chemists could help because of B’s needs, but a photography shop did a great job. Such a pity that smiles are no longer allowed though!

Last weekend also saw B and I back doing Parkrun, though I couldn’t get her to smile for the camera: I’ve adjusted her Moviecol as I think she has been struggling with constipation, something she hates, thought it never stops here enjoying cake 😍.

Have a great week xx

Reasons to be cheerful 22.2.19

R2BC at Mummy from the Heart 

 

A battle won

Parenting one or more disabled children involves many unexpected roles, including becoming a fighter. In an ideal world a family would get information, appointments, a plan and advocacy support at the same time as a diagnosis. But that almost never happens. Instead families are pitched against each other for scarce resources all fighting a system that seems determined to deny our children what they need and deserve. But sometimes persistence pays off and I have to report that I finally FINALLY won the battle to get effective help and support for youngest.

This is giving me a bit more free time (less than you might think though!) so I’m doing a bit of catching up, from boring stuff like filing, paperwork (and finding lots of things to chase up, oops!) to fun stuff like my first proper run since I got injured.

Reasons to be cheerful 9.2.19

There’s also been lots of sleeping, apart from one night when my disabled daughter B was awake from 3am. For the first time ever I tried hoisting her onto the toilet in the middle of the night, but that wasn’t the problem. She wasn’t upset, just chatting and singing along to the music channel on the telly. Perhaps there was a full moon, I forgot to check!

The house has been calm and sometimes empty: less demands on me means more gets done, and time for the occasional leisurely bath instead of quick showers.

Of course I left the house a lot too: I caught up with friends, carried on bungalow hunting, and began the round of medical checks that are pretty essential once you’re in your 50s… And it seems that my eyes are healthy. Phew!

I know this is just a lull, and there will be more battles ahead, but for now I intend to enjoy the peace.

Sharing with Reasons to be Cheerful hosted this week by Mummy from the Heart.

R2BC at Mummy from the Heart