Wednesday, 6 May 2020

Day Eleven

Technology brings me several joys (including the obvious, like Netflix, Spotify, and reading my Kindle in the bath. Although, in case you're wondering, no, unlike a real book, an overnight straddling of a radiator will not revive a dipped Kindle. But it will burn your thighs *thank you, I'm here all week*).

I could happily binge all day on my daughter's texts and emails, for example. A particular favourite during the lockdown has been discovering that she emailed the local library to ask if she can join the annual summer reading scheme. Upon closer inspection - and discounting the fact that libraries are currently closed due to the Covid-19 crisis - it seems she's actually messaged the Tennessee State Library & Archives, who sent a very friendly reply, suggesting that perhaps she meant to send it to the Nashville Public Library. She really didn't.

But the biggest joy today was watching my girl video chat with her little PWS buddy Polly, who is celebrating her 9th birthday.

She first met Polly years ago at one of the Prader-Willi Syndrome Association UK family weekends, and usually sees her every year at one of these amazing events, where people with PWS and their friends and families get the chance to meet, swap advice, share stories, and just hang out in a world where your abnormal normal is EVERYONE'S normal.

We thought it would be nice to wish Polly a socially-distanced Happy Birthday online, so we prised the laptop from my son's cold dead hands (the only way he'd relinquish custody of it), set up a Zoom meeting, and let the girls hold one of their very unique conversations. These chats, as in real life, are stop start, a bit random, and involve every level of interaction from intense interest to daydreaming and silence, with giggles in between.

The highlight was the off-camera arrival of the postman at Polly's house, delivering a birthday present from some family friends, which was then brought into camera shot, and opened. My daughter thought the live-streamed unwrapping of a personalised cushion was the best darn tootin' thing she'd seen all day, as they'd probably say at Nashville Public Library.

Song is Carole King - Wrap Around Joy

As part of the 2.6 Challenge (which is asking people to fundraise and donate towards small charities that are threatened with closure because of the effects of the Covid-19 crisis) I'm currently writing 26 blogs in 26 days.The PWSA UK is a charity which is absolutely vital for people with PWS, their families, carers and professionals who work with them. Without urgent help, PWSA UK will fold. This charity saves lives and for some people makes lives worth living. If you can, please go to my Just Giving page and donate anything you can spare - a few pence or a few pounds, it all counts. I've not donated as much as I wanted to, for example, as I suspect I'm  going to have to save up for some transatlantic library fines...

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