Saturday, 27 February 2016

Curses! Missed it again...

My daughter lives in a residential home, but she comes back to stay with us quite often.  Sometimes we go away for a few days to our small holiday home by the lake.  It’s nowhere near any shops and so it’s relatively easy when there are only three of us, to keep tabs on the food intake.  Except for the occasions when I slip up. 

It might go like this: (on the long drive home, stopped for coffee and early lunch)

Conversation goes like this:

Me:  What would you like?  Coffee?  And a sandwich?

Her:  I’ll pay for myself.

Me: But I’m happy to pay for you.

Her: No;  I want to help out, so I’ll pay for myself.

Bearing in mind that this is day 14 of a long holiday break and I am tired, eager to get home and quite eager for the daughter to go back to her own home, too.  I give in.  Her father and I have a coffee and small salad roll.  She arrives at the table with a trim latte in what looks like a soup cup, and a brown grain bread sandwich.  Healthy enough.   Lunch over, we get back in the car. 

Then she starts to talk, and, for the next several miles the conversation goes like this:

Her: Well, that was good, wasn’t it Mum?   Healthy option, wasn’t it?

Me: Yes, it was.

Her:  The chicken was nice and fresh, wasn’t it?

Me: Yes, it was.

Her: I trust that place for good food, don’t you, Mum?

Me: Yes, I do.

Her: I asked if they had ham, or salad, but they only had chicken sandwiches.

Me: (tiredly, and about to miss the clue)  Ohh.

Her: I nearly had something sweet.  Mum?

Me: Well, good choice that you didn’t.

Her: (and here it comes…) Yes.  They had really nice stuff in the cabinet, too.  So I just had a piece of ginger shortbread.

Me: (wide awake now) Hmmm.  What?  I didn’t see that!?

Her: I ate it while I was coming to the table.  But I thought it was nice to be able to help you out, what with all you buy me, wasn’t it, Mum?  Mum?

Sigh.  Missed it again.  

Monday, 15 February 2016

I was a Conference Virgin

I was 38 years old and still a virgin - a conference virgin, that is.  My third child, diagnosed with PWS, was already 4 years old, but the shock of this diagnosis had not worn off, in fact she was not diagnosed until she was 3, so all our lives were still in a state of flux.  Life was definitely not fair.

In the 80's there was very little information on PWS available in our country then, and certainly no Association or support.  My information came via rather ancient printed copies of the USA "Gathered View" which the only other person I knew who had an older child with PWS had kept stored away in her garage.  Somehow I heard the news that there was to be a conference in Perth, Australia and the speaker was to be a Professor Vanja Holm (known then as the Godmother of PWS in the States).  I was determined to go to a corner of the world I'd never been to before, to listen to people speak on a topic I'd never heard of before, and... fly there.  I hated flying and had loathed it ever since my first flight on an elderly DC3 which shook and bounced its way under and through the clouds and fairly close to the mountain tops.  My mother said she'd come with me. 
Dr. Vanja Holm (front) the first physician to be involved with Prader-Willi syndrome in the United States. Front: Dr. Vanja Holm. In back left to right: Dr. Hans Zellweger, Dr. Gene Deterling and his wife Fausta (founded of the Prader-Willi Syndrome Association-USA), Dr. Andrea Prader and Dr. Sam Beltram, the first Prader-Willi Syndrome Association (USA) president. Taken at the national conference in 1984. Source: Prader-Willi Syndrome Association (USA)

Nervously I boarded the plane.  Confidently, my mother did the same.  She appeared to enjoy the inflight entertainment and certainly enjoyed her meal.  I couldn't eat.  I couldn't concentrate.  I felt every air-pocket for 9 hours.  I was nervous about the conference, I was nervous at leaving the children at home and I was surely nervous about the flight.  We landed, collected our bags and found our way to the hotel.  It overlooked a pedestrian square which was full of people going about their business, shopping, going to work, enjoying the Perth life-style.  Not so confident was their overlooker.

My mother didn't come with me to the conference, so I was completely on my own.  It was like diving off the high dive board into water so deep I couldn't touch the bottom.  I could barely make it to the surface before I sank again into a very watery world full of questions and answers that seemed to float by, but I could never seize.  I went from room to room; I listened to lecture after lecture - delivered by confident specialists who seemed to know what they were talking about.  It seemed so concrete as they imparted fact after genetic fact, rule after rule, warning after warning.  I thought of my small daughter back home, with her smiling face and lovely warm hugs.  I felt her tiny arms around me, saw her own determination to survive in this unforgiving world, and it was only by remembering her boundless love for life that I managed to get through those three days.

After the conference, my mother took me on a bus tour to see the wild flowers of Western Australia.  It wasn't quite the right time of year for it, but I do remember seeing a field of the most vivid purple and exclaimed in delight at what, to me, was beauty and perfection.  The bus-driver overheard my comments and turned on his microphone so that the whole bus could hear..." Yeah, well, that field over there?  That's full of 'Patterson's Curse'.  It's a weed."  He paused for effect, so I felt suitably cowed.  "However," he went on, "it's also known as 'Salvation Jane' as it can be a food crop in the drought."

Under my breath, I said to my Mum, "well, it's probably the prettiest thing I've seen yet".  She firmly agreed.  And I've thought about it often.  How weeds survive.  They're strong.  They don't give up. They are always there, no matter how much you try to weed them out!

Anyway, since that first nervous conference, I've been to many, many more.  I went to the first IPWSO conference in The Netherlands, I've been to places I would never, ever have been to - Taiwan, Romania, South Africa.  I've learned to separate the factual lectures from the child or adult with PWS, because everyone is different.  I've learned to enjoy the company of other parents, and how easy it is to talk freely with them.  I've learned that the knowledge passed on by specialists is something we parents are privileged to share at this level, and I've made good friends with many of our professionals.

First-time conferences are never easy.  I've learned to recognise the lost look on parents' faces, and to sit and talk and share my own experiences.  I've learned to laugh out loud at the things our kids do to try to win the day and have been bent over in hysterics on many an occasion.  I've raised a glass and sung many a good song.  I've also wept and cursed the unfairness of life, but I've learned such a lot about life as well.

If our 9th international PWS conference is going to be your first; be encouraged by what you are going to learn, be uplifted by the friends you are going to make, and, above all, learn to be strong.  To be a 'salvation Jane'.