This week is PWSA (UK) Awareness Week. The Prader-Willi Syndrome Association (UK) want to spread the word about the rare chromosome disorder. They want more people to know about the syndrome, in an effort to allow children and adults with PWS to be understood and accepted, and to make more people across the country aware of what the condition means for PWS people and their families. “Talk about PWS” is the strapline.
Today the PWSA (UK) is talking about Families, in particular PWS family events organised by the association and its members around the country.
Without wishing to sound like a bigamist in the confessional box, I want to talk to you about my other family. We were slow starters when it came to meeting 'people like us' with Prader-Willi children. I was fiercely protective of my new baby and unsure and frightened of the new world of disability we’d hurtled into. I bunkered down, built up the defences. We’d face this. We’d deal with this as a family. Our family.
I should have raised my head above the trenches sooner. I should have been as brave as some of the parents I've since met, bringing their tiny new babies along to PWSA events. What I think they've realised, sooner than I ever did, is that there is a whole new family out there. Other parents facing the same challenges as us. Other people whose babies had been born with a chromosome glitch that would have a dramatic effect on their lives. The same glitch. The drama their child has been cast in might not be exactly the same show as ours, but it was created by the same wonky production company, with many similar plotlines, belly laughs, and cliffhangers.
Our new family is our PWS family.
Some of them we’ve read about and chatted to on Facebook and Twitter and online blogs. Some of them we’ve been to parks and picnics with, had Christmas parties with, spent a weekend away with (thanks to the PWSA UK, who, by the way, are very much included in this family). Some we’ve never spoken to, some we’ve chatted to only briefly, some we’ve talked for hours with. Some are strangers, some are becoming friends, some already are.
Knowing them, meeting them, gives us the chance to feel normal, to be understood without the need for explanation. Most of all, it give my daughter a sense of belonging, friendship, fascination and fun. Meeting other children with PWS is her favourite thing to do, apart from eating. When we’re with our PWS family, we don’t need to add the ‘apart from eating’ bit, because they get it. They live in an ‘everything comes second to eating’ world, too.
We’re not all the same. We don’t agree on everything. Some of our PWS family have the positive answers we’re searching for, others have stories we’d rather not hear, but need to. Some lead lives that mirror ours, some take wildly disparate turns. Our children are completely different at the same time as being incredibly alike.
Today is the start of PWSA UK Awareness Week. The Prader-Willi Syndrome Association (UK) want to spread the word about the rare chromosome disorder. They want more people to know about the syndrome, in an effort to allow children and adults with PWS to be understood and accepted, and to make more people across the country aware of what the condition means for PWS people and their families. “Talk about PWS” is the strapline. If you’re a regular reader of this blog, you’ll know I need no encouragement on this front. (‘Shut the flippety flip up about PWS’ would be a harsher, but not totally uncalled for, tagline for me and my ramblings).
Today, the PWSA (UK) is talking about...new diagnosis.If you could meet yourself now, what message would you give yourself?
That’s an easy one. It’s to change a thought I had at the time, which I’m convinced is a thought all parents of PWS children have: “Why me?”
To be more precise, it’s “Why my child? Why has this happened to them?”, but boiled down and reduced, it’s essentially “Why me?”
There’s a John Boorman film called Hope And Glory, set in London during the Blitz, where the family are cowering inside during a bombing raid, and someone yells: “Oh, please, God! Not on us!”, and the teenage daughter screams: “Drop it on Mrs Evans, she’s a COW!” I could identify with that selfish, mean-spirited thought. (I didn’t have any specific cows in mind, though, honest. What do you take me for?)
Because in the beginning, in the shocking, frightening, moments when doctors pull the rug from under your feet and tell you your child is disabled, you feel unlucky. Desperately, horribly, unfairly unlucky.
It changes. One day, that thought isn’t there any more, or at least it only surfaces fleetingly, when you occasionally reach the end of your surprisingly long tether.
Once you understand more about the sheer number of things that can go off-plan when you’re talking about the incredibly complicated blueprint of a human being, once you meet other parents dealing with other syndromes affecting other children in other ways, once you see the challenges other parents with non-disabled kids can face, too, “Why me?” is sanded down, and re-chiselled in its place is a different phrase: “Why not me?”.
If it wasn’t me, I wouldn’t have my daughter. And life would not have been the same. It wouldn’t have been as good.
We’re back home from our first ever Prader-Willi Syndrome Association (UK) Holiday weekend, and we are kernickity-knackered.
It was a certified hit with our daughter. So much so, she only allowed us to come home today as planned (as opposed to many of the families who were staying on for three nights, not two) after being assured by independent* arbitrators that she was in no way missing out on any activities or get-togethers tonight whatsoever. (*I say ‘independent’, when what I actually mean is people who were willing to tell a white lie when winked at meaningfully by me out of my girl’s sightline).
We got to cuddle some gorgeous PWS babies, brought along by some incredible mums braver than I ever was at that stage of my daughter’s life. I was too frightened and shell-shocked to throw myself into the PWS community that early - with hindsight, it would have done us the world of good. The cuddling gave me the chance to confirm my hypothesis that cradling a soft, beautiful, PWS baby is the most calmingly hypnotic experience you can have, and a surefire way to disappear time.
We played and chatted with some crawlers, shufflers, toddlers, tinkers, teenagers, mums and dads and nans and grandads and careworkers and friends. We coloured, we did some “wake and shake” exercises, we adventure-playgrounded, we wildlife-parked, we healthy-barbecued, we picnicked, we nature-trailed, we talked ourselves hoarse, and we snuck in a few cheeky wines.
My girl gave two fellow teenage PWS girls the One Direction Instant Kudos Quiz: “Do you like them? Who’s your favourite?” Both came up with the compulsory correct answers: “Yes!" and "Harry!”. Eve, aged 13, turned out to be a real kindred spirit who lives only about an hour from us. Sunday walks are being arranged, and a half term sleepover is all but finalised.
My boy fell in man-love with the punk-loving brother of a PWS girl (whose fashion sense he is now desperate to copy). I told him he’s not getting his nose pierced, mainly because he is blinking well only five years old, but I did agree he could spend his saved pocket money on a Sid Vicious replica padlock neck chain like the one his new cool dude friend was wearing. This was a compromise I felt necessary to avoid Anarchy In Our Own Particular Part Of The UK.
Maggie and Erin, from the Prader-Willi Association, worked from morning until night, hosting, catering, introducing, chatting, smiling, and generally being superheroes. My daughter (with a little whispered prompting from me) stood up in front of everyone and thanked them both for all their help, hipp hipping some hoorays, and leading a round of applause.
Now, a few hours later, after a relatively painless journey home, which was only interrupted by a donkey jam on the winding New Forest roads (Eeyore really has no understanding of the Green Cross Code), I still feel like cheering.
My daughter felt part of something, not apart. She was like other people, not unlike them. She made new friends who shared something special with her: their Prader-Willi Syndrome. It doesn’t define them, but it does unite them. Forget Manchester City winning the Premiership - Prader-Willi United is top of the league. And it was this weekend’s away form that won it.
My daughter was wearing her glittery dress, bought as part of a Halloween outfit but cunningly doubling as a disco party frock this afternoon. She left a trail of silver specks wherever she sat.
The party that merited the spangly outfit was a Prader-Willi Syndrome Christmas Party: a collection of chromosome blip-sharing youngsters who gathered together at a church hall in Enfield, along with parents, friends, and siblings. Some of the kids were dressed up: there were elves, fairies, superheroes, a snowman, and even a matching Dad and son crocodile onesie combo.
My girl launched into her usual fact-finding mission. “Who’s got Prader-Willi?” she asked the girls sitting at the craft table making paper chains with her. Introductions were made, names, ages, and PW yesses were noted. Shy grins turned into big, beaming smiles.
One 18-year-old girl swapped email addresses with me so I could send her a photo. We’d never met before, but she was incredibly familiar to me. I kept looking at her: her glasses slipping down to the end of her nose; her dipped head and laugh, her hands being constantly wrung with excitement; her slightly off-kilter questions; her body shape; her voice; her language; her wonky smile, her mannerisms; her happiness. I realised, with a jolt, that she was my daughter’s doppelganger. The likenesses were uncanny.
Santa was all set to make an appearance. The suspense was too much for my five-year-old boy, who went into meltdown over how long it was taking the Man In Red And White to get there, and would simply not accept 'traffic jams' as an excuse for the delay. “He can just fly over the cars,” he squealed, his perfectly reasonable logic delivered perfectly unreasonably. “That’s my son,” I explained to the woman I was chatting to, as the red-faced, sobbing boy in a Superman costume was dragged off by his dad into a corner to be Told Off. “He’s not got Prader-Willi, he’s just got the hump.”
Father Christmas finally appeared. My heart lurched. The party was being held in the hall of a Mormon church, and earlier on my girl and I had been talking to an American chap, who turned out to be one of the Salt Lake City Squad. (By the way, Mormons, no caffeine? No tea or coffee allowed? Who knew?). Anyhoo, we’d all discussed his accent and how people from different countries spoke differently. My girl had paid very close attention. So when Santa started handing out presents and wishing the boys and girls Merry Christmas in a familiar American accent, I whispered to my husband: “She’s going to realise who it is.” My girl, who had been commandeered by her new 18-year-old twin into helping pass Father Christmas the gifts, had had plenty of time to put two and two together. She marched over to me, clutching her own present, her face flushed with a revelatory blood rush.
“You know how Santa can’t be everywhere, and sometimes he has helpers being Santa instead of him, Mum?”
“Yes.” She grinned.
“Well, I think this is actually the real one.”
Song is The Posies - The Glitter Prize Many thanks to all the parents and volunteers who made today such a special event.
People with Prader-Willi Syndrome are extraordinary. I forget sometimes just how extraordinary, and then a day like yesterday comes along.
The extra-extraordinariness manifested itself in a lecture hall at a conference, in the hallowed surroundings of Fitzwilliam College, Cambridge University (a place I was too thick to study at, but where I can now say I havestudied, even if it was just for one day).
I was there attending the 8th International Prader-Willi Syndrome Organisation Conference. I could only go for Sunday's programme of events, but I’m glad I made it. I’ll try to share some interesting things I learned from various presentations when I’ve had chance to digest the information. For now, I just want to tell you this...
I can still feel my skin tingling. And no, that’s not just the effects of this country's recent, inexplicably lengthy bout of glorious sunshine. I may have needed Factor 50 protection, but it wasn’t to shield me from the sun’s rays, it was to stiffen my upper lip and stop me blubbing.
What got me wobbling was the glorious sight of a bunch of adults with PWS, of varying shapes and sizes, and differing degrees of eloquence and ability, standing up and speaking in front of a lecture hall full of scientists, doctors and parents. Some had taken part in clinical trials and were there to speak about this experience. Others talked more generally about their lives, living at home or in group homes. An Australian man’s rambling, stuttering, childlike glee in telling us of his love of walks and breakfast was a joy to behold. An Irish fella’s pre-emptive and then subsequent, laughter at his own joke led to a mini Mexican Wave of infectious giggling in the audience. One woman’s fluent, structured, matter-of-fact description of the sadness of her life and how she never felt she fitted in anywhere was heartbreaking. A fourth extraordinary PWS delegate spoke about how her behaviour had improved after the implant of a tiny pacemaker-like stimulator, which worked on the vagus nerve in her neck, so much so that she felt it had played a huge part in enabling her to have the ‘greatest day of her life’ - her wedding day.
The PWS on display today magnified my conflicting thoughts and feelings about the syndrome, took my heart in its fist and squeezed. The more I learn and the more I see of PWS, the more amazed I am at the power it has to thrill you, chill you, surprise you, entertain you, sadden you, slap you, tickle you, and astound you.
These people with PWS share so much and yet lead wildly different lives and are as disparate as they are alike. The parents who were there, and who came from very different parts of the world, share an extraordinary bond, too. It’s a link none of us chose, but it’s steely strong.
Song is The Decemberists - I Was Meant For The Stage
There is nothing quite like a British summer picnic in the rain.
Pitching a gazebo in the wind, weighting down your rug so it doesn’t flap and fly away, huddling in your fold-up chair, warming your hands on your thermos flask, all whilst wearing that defiant combination of a fleece and sandals.
We braved it. Twice. Two days, two outdoor Fun Days, two picnics, two sessions of umbrella juggling, and two large helpings of laughs.
Saturday’s function was a school summer fayre (which was at a posh private school, so included a proper stage with a pretty decent sound system and lighting). The music and dance acts included ex-pupils who had gone on to appear in the West End, a rubbish blues band and a Robbie Williams tribute act. The Fake That fella was cocky, hyperactive, and sang in a cheesy, fake-accented pub-singer style. So, pretty convincing then.
My daughter took one look, and pronounced: “He doesn’t look like him.” She has a way with a pithy review. To illustrate her point, she drew a picture of what Robbie ‘Wimmlomams’ actually looks like. I think that’s the microphone he’s patting, and not a little Gary Barlow.
Sunday was the main attraction, though. This was the Prader Willi Syndrome Association Family Day at Heaton Park, Manchester. An informal outdoor get-together organised by the PWSA (UK) where families could meet and chat and the kids could play games and have a picnic (the food bit came early on, obviously, what with it always being the most important part of the day for the grub-obsessed PWS children).
We’ve been to one of these events before (see blog entry Picnic). And like before, when I met the children, who ranged in age and ability, I was acutely aware of both their uncanny similarities and their striking differences. Just like any bunch of kids.
My girl, of course, loved it. She sat, grinning, looking shyly at the other PWS children. I walked her round with her notepad, and she took a register, asking the boys and girls their names and ages. This was as much for my benefit as for hers, as I knew she’d be questioning me for weeks afterwards about who was called what and how old they were. In retrospect, we should also have got shoe-sizes and number of teeth, as these are her other Important Facts To Know About People. What was I thinking?
As the day progressed, I noticed that my daughter keep ostentatiously putting her Hannah Montana book in her bag and getting it back out to read, looking round her as she did. I realised that she was aware she was the oldest, and was showing off.
“Am I the best reader, Mum?” she asked.
“Well, yes, you probably are, sweetheart. You’re a teenager and you’ve been at school much longer than anyone else here, so you’ve had more time to learn.”
“So I’m the best, then.”
“Yes.”
She looked proud, and smug.
As we walked back to the car, I asked her what she had liked the most. She said that it was seeing Will again, an adorable boy with PWS she’d had made friends with on an earlier trip up north (see blog entry Links). This time, they’d played boules together and Will hadn’t stopped beaming all afternoon.
A bunch of strangers met in a park today and had a picnic.
It was a small, informal get-together at Hainault Forest Country Park, near Chigwell, organised by PWSA (The Prader-Willi Syndrome Association UK).
Our children played together, had a sing-song, did the hokey-cokey, and had their faces painted. Blow up guitars were strummed. Sparkly microphones were mimed into. Grins were grinned.
My daughter joined in the fun, her initial shyness melting into enthusiasm, as she managed to put me to shame with her firm grasp of the lyrics of “This old man, he played one...”
She had been looking forward to this for weeks, and it wasn’t long before she was asking any child that stepped within a five yard radius of her: a) whether they had PWS and b) how old they were.
My girl was fascinated to see that some children were: taller/shorter; slimmer/chubbier; chattier/quieter; friendlier/shyer than her. Some were in wheelchairs, some were skipping around. It was the first time she’d seen as many people with PWS in one place (I think, if I counted right, there were eight). They were, of course, as different as they were alike.
She's all tucked up in bed now: her face-paint washed off and the excitement over. In the brief few seconds between my shattered girl's head hitting the pillow and her being out for the count, I asked her what the best bit of the day had been. She told me, of course, that it was the picnic. (Food comes first - it always will). But then she said her "equal" best bit was having a big cuddle with a baby girl with Prader-Willi who kept smiling at her (see the picture above).
I think my daughter found the whole day kind of amazing.
I did, too.
Video is Sam & Dave - I Thank You, dedicated to Patsy Counsell and all the other lovely people who organised today's event.
We got to cuddle some gorgeous PWS babies, brought along by some incredible mums braver than I ever was at that stage of my daughter’s life. I was too frightened and shell-shocked to throw myself into the PWS community that early - with hindsight, it would have done us the world of good. The cuddling gave me the chance to confirm my hypothesis that cradling a soft, beautiful, PWS baby is the most calmingly hypnotic experience you can have, and a surefire way to disappear time.
My girl gave two fellow teenage PWS girls the One Direction Instant Kudos Quiz: “Do you like them? Who’s your favourite?” Both came up with the compulsory correct answers: “Yes!" and "Harry!”. Eve, aged 13, turned out to be a real kindred spirit who lives only about an hour from us. Sunday walks are being arranged, and a half term sleepover is all but finalised.
Saturday’s function was a school summer fayre (which was at a posh private school, so included a proper stage with a pretty decent sound system and lighting). The music and dance acts included ex-pupils who had gone on to appear in the West End, a rubbish blues band and a Robbie Williams tribute act. The Fake That fella was cocky, hyperactive, and sang in a cheesy, fake-accented pub-singer style. So, pretty convincing then.
