Tuesday, 28 April 2020

Day Three

Today’s entertainment has consisted of ‘coaxing’ my son to complete a science assignment on axolotl salamanders (his immediate thought, of course, upon learning how they regenerate amputated limbs, being: “What if you cut their WILLY off?”).

It has also included, ambitiously - and regrettably - reading a college-assigned sexual health resource pack with my girl, which was going reasonably well until I came to the sections on genital hygiene tips and anal sex* (*reader, I clicked onto another document faster than a novice nun being caught looking at NakedHotPriests.com by the Mother Superior.)

In other words, it’s just an average Tuesday in lockdown.

I didn’t expect to be home, social distancing, and *ahem* ‘teaching’. Covid-19 has forced us all, like the axolotl, to adapt. But hopefully not to grow a penis.

The thing is, I should be used to adapting. If you’re the parent of a person with PWS, it’s the only way to survive.

Most people, after all, have never heard of Prader-Willi Syndrome. Named after the Swiss doctors who discovered it (wouldn't it have been great if it had been Toblerone-Leerdammer Syndrome?), it is a rare, complex genetic disorder, affecting approximately one in 22,000 births. You don’t carry the gene for it - it just happens. I mean, I can give you the technical cause, if you don't mind some medical jargon. Ready? 

It's because of some random shit that goes on in a chromosome.

If you're interested, I did once explain it in slightly more detail in an earlier blog post [Genetics], in what amounted to a war crime against science teaching. Click on the link and prepare to be blinded by science. Or amused at my ineptitude. Take your pick.

When my daughter was born and we were given her diagnosis - after three weeks of not knowing what was causing her floppy muscles and her inability to feed without a tube - we were floored. No, not floored, bloody well steamrollered. We had to peel ourselves up from the tarmac and adapt. To her path through life being ‘off-track’. To the calendar crammed with medical appointments. To the constant vigilance around food. To the emotional meltdowns. To the future that was just...different.

We’re still adapting.

For example, home school/college lessons this afternoon have adapted into a showing of Hotel For Dogs on Netflix for the kids, and a stiff gin for me. Change is good.


Song is Ezra Furman - I Can Change

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. We've already beaten my modest target - and every donation counts. THANK YOU to everyone who has given, and also to those who are just reading and maybe learning a little bit about PWS. 
I'll repeat my scorecard: If you can spare just 26p, it would be help. £2.60 would be brilliant. £26 may earn you a sexual favour after social distancing is relaxed, please advise me if this will be required or not so I can adjust my training regime accordingly.

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