Puffed

Pneumonia. Her left lung was very hazy on the X-ray and there's essentially a lot of gunk stuck there that needs to shift.

My daughter is on oxygen through a nasal tube. She's still not getting enough air into her gunky lung by herself. Her shape from her scoliosis, her poor muscle tone from her Prader-Willi Syndrome, and her daintiest of dainty and infrequent coughs being too damn dainty and infrequent, are all complicating matters.

We're waiting for the strong antiobiotics to kick in. In 24 hours, if hands-on physio, breathing physio, and the meds don't shift the gunk, a decision may have to be made to do a chest drain.

"I feel grotty, Mum," my dark circle-eyed girl told me. "I just want to get better."

In that brain-bamboozling way she has of random conversation shifts, she then said: "When you went to get our things earlier you missed a lion." I looked at her in alarm, thinking she had suddenly started hallucinating. "I think Daddy would have said if there had been a lion on the hospital ward, sweetheart," I said, patronisingly. "There was a lion," she insisted, and of course I found out later she was right. A person in a furry suit kind of lion. One of those 'supposed to be charming but actually quite creepy' type of things you see visiting children's hospital wards. Like clowns. Or One Direction. (I'm not going to even mention Jimmy Savile).

Another sofa-bed vigil is about to start. I think there may be less vigil-ing in my vigilance tonight because I'm cream-crackered. Not as cream-crackered as my pale and poorly girl, though. She's puffed her way through her breathing exercises today, with great difficulty, and she's all puffed out.

I just want her to get better, too.

Can't be doing with mobile phone-posting a video tonight, so knock yourselves out by Spotifying Puff The Magic Dragon. Or something by Puff Daddy, I suppose. But the dragon one will be better.

Admitted

I am on a children's ward with my girl.

She's been uncharacteristically off-colour for a few days. Really lethargic, and with a niggly little cough. This morning, I took her to a duty GP at her medical practice, who listened to my worries (about how she's never 'ill' ill, about her high pain threshold potentially masking problems, about how she seemed to be unusually tired). He didn't dismiss me as an over-anxious mum, and sent us to hospital. 

A few hours, a few examinations, and one X-Ray later, she's in bed, in a packed ward, with oxygen being piped through her nose, and getting intravenous antibiotics for a chest infection that I suspect will keep us here for a few days. She's been watching Eastenders on a telly by her bed, with the audio being fed through the earphones I happened to have with me. I, on the other hand, have been listening to the sound of five - count them, FIVE - babies screaming.

It's going to be a long night.


[Struggling to post a song via my phone in hospital, so just imagine the video to Beastie  Boys - Sabotage (from the album Ill Communication)].

Scheming

We’re into the second week of the summer holidays. I’m still sane. 

My boy spent five mornings of the first week at the Baptist Church Holiday Club. He’s going to the Anglican Church Holiday Club later on in the holidays because I believe in a multi-faith society, particularly when it comes with cheap as chips childcare.

Meanwhile, my girl read. And then read some more. 

In fact, she’s completed the library’s Holiday Reading Scheme already, which a weight off my her mind, my mind, and everyone’s mind. After years of taking part in the scheme, - which requires children to read six books to get a certificate, but 18 if they want a medal - she’s finally stooped to the tactic of choosing really easy books. (When I’d previously suggested this to her, I’d got short shrift).

So she’s read ’em already, and got another medal for the collection (the one with the ribbon, pictured). This is despite her being over the age limit for the scheme now, and being encouraged by the ‘library lady’ each year to switch to the scheme for older teenagers.

My daughter politely declines. “I don’t want to do that, thank you. You don’t get anything.”

She’s still got her nose in a book, mind. She’s reading Harry Potter, in preparation for our upcoming visit to the Warner Bros. Studio tour. We’re going to watch the films again, too, although with some tricky pausing and forwarding. “I don’t want to see You Know Who, because I’ll have bad dreams,” she decrees. So we’re going to have to do a Harry Potter marathon minus the Voldemort bits. It’s given me an idea: if my little lad wants to watch the Godawful Star Wars prequels, I am only going to agree if I can apply a similar censoring technique, and cut out Jar Jar Binks.

Song is David Bowie - She's Got Medals

Hilly

They walked, giggled, and walked some more. Just three girls with Prader-Willi Syndrome. Three girls with hypotonia, ignoring their weak muscle tone as they made their way from pirate ships to dinocars and back again, up and down hilly, hilly paths.

It had been a logistical feat to get my daughter up north for the theme park trip, organised for a PWS buddy’s birthday. We’d stayed with family the night before after a three hour car journey. My husband was working so I had my little boy with me, too, which meant I’d decided to taxi my girl to and from her friend’s house and not accompany the group, as I didn’t think she'd want her brother cramping her style. In any case, the crack squad of two PWS mums were enough to deal with the three girls (and one little sister). If they’re reading this and swearing at me, I’m sorry, all right? (I’m not, really).

Instead, I kept the little lad happy with a trip to a zoo and a Pokemon hunt. I made a woman spit out her drink in a wine bar in Uppermill, when my son caught a Pidgey and I told him with a serious face that wine bars and pubs were obviously excellent venues for Mummy, Auntie Jill and Uncle Kevin to hang around in in order to help him catch more Pokemon, and we should visit some more.

My girl slept a deep, happy, exhausted sleep. I think the two PWS mums did too. Apparently, those hills really were hilly.

Song is Tom Waits - Top Of The Hill

Dolly

I’ve just taken off my Bernie Clifton-stye inflatable horse costume, and I feel like I’ve let myself down.

Come on, it’s late, everyone’s in bed, I’m a little bit woozy on diet cokes and happy endorphins, and I had to tell my joke somewhere.

Me and my girl attended a special gig tonight. It was a Rockin’ Roadrunner Nightclub night in Northampton - a gig organised with and run for young people and adults with a range of disabilities. Star of the show was bazooka-bosomed Dolly Parton tribute act Kelly O’Brien.

We went with my daughter’s Prader-Willi Syndrome Best Friend Forever (PWSBFF) and the friend’s frankly-she’s-a-bad-influence-on-me mum. After a voucher-funded Pizza Express meal for four (discounted to the princely sum of £9), we hit the venue, I hit the loos and donned my battery-driven rodeo outfit, and we all hit the dancefloor.

It was a beautiful night. Dolly/Kelly was fantastic, interacting wonderfully with the eccentric and enthusiastic crowd. My girl, with her checked shirt on, and her red ear defenders, sang along happily to ‘Jolene’ and ‘9 To 5’, and I discovered all kinds of new, inflatably driven dance floor moves.

Facts I have learned: 

• A duet with Rockin’ Roadrunners’ very own waywardly out-of-tune Crazy John standing in for Kenny Rogers can be better than the real thing, especially when Crazy John has the wherewithal to insist the crowd acknowledge his singing partner: “Ladies and gentlemen, Dolly Parton!”
  
• A special needs crowd need no encouragement whatsoever to whoop it up in an almighty manner.
• My daughter, confronted by the sight of two 12ft tall 'security guards' (very entertaining stiltwalkers who were part of the show), will still actually believe they were randomly tall policemen, despite any logical explanations you make in an attempt to convince her otherwise.
• If you’re wearing an inflatable horse, people want to hug both you and the horse. Also, it takes exactly the length of ‘I Will Always Love You’ to negotiate going to the toilet, and it’s really not a good idea to re-inflate before you get out of the cubicle.
• You can really fit an awful lot of joy in one place.
• We’ll be back.

All you have to do is smile that smile

And there go all my defences

Just leave it up to you and in a little while

You’re messin’ up my mind and fillin’ up my senses

Video is Dolly Parton - Here You Come Again

The next Rockin' Roadrunner Club event is the free Seaside Festival music festival at Abington Park, Northampton, on Sunday 18 September. More details from their website, here.

Real

I can’t get into my daughter’s head. I stop and wonder sometimes about her perceptions of herself, the world around her, and her place in it. 

Sometimes I get a peep inside. A little flash. It came this week in the form of a letter. 

The background to it is that she’s been doing one morning a week work experience at a health spa. Her school’s work experience co-ordinator sent me an update. I read it out to my girl and she was pleased, really pleased with herself.

I’ve read it a few times, and it’s the final sentence, it’s always the final sentence. That’s what gets me. The choice of words and what they mean.

Song is Buzzcocks - Real World. Inexplicably set to images of birds.

Cone

It was going really well.

My daughter’s 15 inch scar on her back from where she had her spinal surgery just a few weeks ago had healed up nicely.

That was until the other night, when I went out to play rounders (I’ll tell you another time about how cathartic smacking the hell out of a ball with a wooden bat is). My husband was on nights, so my mum had agreed to babysit for a couple of hours.

I asked the usual getting in through the front door question: “Were the kids good for you?”

She gave me a look. “Well, they were, but we’ve had a bit of an incident.”

The i-word is not usually a welcome one, and it proved true to form. My daughter had picked her scar. She’d got blood all over her nightie, all over the bedsheets, and had opened up some of the healed up areas of skin.

Mum handed me a small piece of wiry material. “She says its her stitch.” I examined the offending article. “Yep, that’s a stitch all right.”

A helpful voice piped up from my boy's bedroom. "Most importantly, Mum, she's picked the bottom part where it took longest to get better, Mum. Most importantly, you know. Most importantly." God, he loves it when she's in trouble.

I cleaned and patched up my girl and then had a bit of a rant at her. I felt bad afterwards - a tendency to skin-pick is a common problem with Prader-Willi Syndrome, and later I thought about that urge, and how itchy and tempting a big healing scar must be.

We booked in with the nurse at the GP’s surgery (who just signed her off the week before), and we’re back putting dressings on for a few days. 

I’ve cut my girl’s nails short. 

A friend has offered me two ‘cone of shame’ protective dog collars to put round my daughter’s hands. I almost considered accepting.

Song is Wilson Pickett - Ninety-Nine And A Half (Won't Do)